PMRGCAuk
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New to GCA at age 50

Hi all, I live in Taiwan, born in Holland, and was diagnosed this January, on my 50th birthday with GCA. I am at the low point of my steroid taper, trying to do the impossible by keeping only 2.5mg steroids per day, combined with the unaffordable Actemra shots, first 2 shots in Feb, now every month, with a year to go. Want to find out what CBD/THC can do for me, coz these steroids will kill me in the end..-or the Actemra bills will ruin me first.

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You’re 2 months in and are on 2.5mg pred?

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Sorry! That was a bit rude! Welcome to the forum!

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This may give you some comfort

practicalpainmanagement.com...

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That is a first for me! Really hope that's all true. Leaves me with an apparent hyper-sensitivity for steroids, I guess, coz they make me feel utterly miserable in higher dosage.

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Hi Floyd111, Welcome. Wow, some birthday present, huh? Bet you were thrilled!

I'm surprised that you were able to taper down to 2.5 mg so quickly!!! I have both PMR and GCA and have been on HIGH dose steroids since November (between 60-80mg!) And yes, I too worry that they will kill me... but, what's the saying, “Better the devil you know than the devil you don't.”

Let us know how you get on with CBD/THC.. I see a lot of "chatter" about both on different sites.

Best of luck and again, welcome.

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Hi floyd111

It sounds like you have hav ing a hard time of it. O don't know enough about actemra to comment much. It suits some and not other like most medications. I have just read a few articles online from 2017 from studies where people gad only had @12months on it. I thought it was being use to treat and as steroid sparing agent. Being at 4.5 less than 2 months in seems very sparing. O hope you can keep the treatment up if it is helping. But I would be keeping check if symptoms at the same time. Welcome!!

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Hi,

Not a very nice birthday pressie ...sorry to hear that.

The steroids won't kill you, not at that level - see mamici1's post - both her, I and many more have been in the 80s and above and are still here to tell the tale. Agree the price of Actemra might though! No experience of that so can't help and in UK it's on NHS.

Personally I think you might be better on the Pred alone, but that's just my opinion

If you type CBD in the search box at top of screen it might bring up previous posts, there have been a few just recently. I've just typed it in and there are loads.

Good luck.

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Thanks for the nice comments.. Bringing the steroids down was fast because I started with a 70kg bodyweight, and 40mg was actually a bit too much. (My ESR was at 70) So the doctor suggested a 5mg reduction every 3 days.. I hade several re-flares, so I delayed the tapering a few times.. When I got to 5MG, I took the Actemra, and the doc was confident I could cut the steroids to 2.5 that way. I had 2 10 minute ocular scares, 2.5 weeks apart, and a bigger one last night, combined with heavy headache behind my right eye, massive night sweats, malaria shakes and light hallucinations, besides all kinds of christmas effects in my left eye. I had to go back to the hospital for bloodtests and another CT scan. Results in after the weekend. Needless to say I am back at 5MG now, which is about as much as I can take without feeling sick from it, and unable to taste food. I so want this to be over, and I am still coming to grips with this being a life-thing, most likely.

Still, better then I was. First month was hell, though. The headaches were no issue on Tramadol 400, haha. The night sweats were a bother, but still livable.

It was when I got off the opiates, the second week after my diagnoses, that reality hit me harder then before. Someone had come to my house at night and had stolen 25 years of my life. The first ocular event made me feel like death was staring me in the face. My life felt over. The steroids made me feel like my belly was no more then rotting, white meat, ready to fall off. Heavy depression set in. The opiates where getting their payback. Crying bouts, so bad that I had to ask for anti-depressants and sleeping pills.. Lost all function and purpose in life, seeing my wife handling everything while I could no longer be a dad to my little ones. Those pills made it much worse! 48 hours of that and I decided I was going to fight back. Kicked the Tramadol, the Halcion and the sleep-stuff to the curve and started making moves. First: information! What is happening to me? What's out there?. Found a better doctor and found Actemra. Studied every study ever done on all steroid-replacement drugs. Got my Actemra shot and on advise of my wife, left for Africa on a no-budget month of simplicity in Zimbabwe. I am no longer depressed, no longer scared shi-less, but now simply worried.

Next up, I want CBD/THC treatment. In Africa I had been smoking THC in large amounts, and recovery/remission seemed near.

Back home, where all is illegal, I went without for 48hrs and had the biggest episode to date.

Coincedence? Maybe, but in the light of steroids and Actemra causing so much mayhem worldwide, it must be worth a prolonged try.. To be continued.

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Pred will not generally kill you in the end - I have been on PMR doses for heading for nine years and have no problems at all - and I have never been on Actemra, I couldn't afford it. You have the link for the article about the lack of problems with pred at PMR doses.

Why not try stopping the Actemra and seeing what dose of pred works for you? There is no evidence from the giacta study that it was needed for a year even for GCA. There are no trials of it for PMR.

I'm far from clear though now whether you have PMR or GCA. If you have GCA then 40mg is not a very high dose - whatever weight you are, it is the lowest end of the dose range. If it is PMR then yes, it is far too high, 25mg is the maximum recommended dose, 15-20 is more usual.

Opiates and other pain killers will do nothing in the either PMR or GCA and I would say your first doctor didn't have a clue. Your current doctor doesn't seem to be working within any current evidence or guidelines for either PMR or GCA.

I suppose that if you are on Actemra there is a considerably reduced risk of loss of sight with GCA - but it is not excluded if the actual disease process is still active and you try to go too low on the pred - some people do not get off pred, even with Actemra.

CBD/THC may make you FEEL better - but it is unlikely to have an effect on the underlying cause of the GCA. And that is where the risk lies.

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The latter is -at the least- unclear. I literally have not been able to find a single full report about CBD and GCA. I plan to be the first detail-documented case going public.

All signs point towards CBD+THC being a strong anti-inflammatory agent.

Steroids do not heal underlying issues, for sure. They repress, while the cause of GCA remains unknown. If you study all the studies, you'll find that GCA re-flare percentages in all medication cases are shockingly high.

The Giacta study was the most famous one, but there were almost 20 more such studies in the last 3-4 years. Indeed, Actemra remains an experimental drug. I am not counting my chickens yet. But, the overal conclusions that I read from 20 studies is that the combination of my young age, combined with Actemra should put me in the top percentage of 10 years without remission. But that's statistics. They mean nothing one falls through the cracks! Gotta try still. Even though I do not have Rheuma, my mom and my sister do. My mom also has fybriomyalgia and diabetis. If I start taking steroids at age 50, I am looking at diabetis real soon as well.

BTW, I have GCA, no rheuma-issues anywhere..luckily.

There is absolutely no need to disregard, nor to glorify Actemra, but one could scold them for being really expensive. There's nothing right about that. One should also not ignore the global revolution that seems to be underway in the CBD industry. It's enormous and jam-packed with amazing testimonials, -and not just on the oily websites!

It is not a popular topic to be talking about dangerous steroids when surrounded by people with no choice but to take them in all kinds of doses, for years, or for life. But, if there is even a chance that CBD/THC can be an organic, cheap and healthy replacement, we should all be on top of that and find out, especially since there are no bad side effects ever found by anyone, especially if taken without THC.

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And yes, my first 2 doctors had never seen GCA in real life, but they saved my life by stepping up real fast after I diagnosed myself online and told them about it. Afterwards I found a specialist who had seen 5 cases in his life(!) Still, he was completely aware of all the studies and conclusions I spoke to him about, so that was good. Yes, my 2.5 mg prednisone is probably not tenable. After yesterday's episode, I am back on 5mg, and will stay there until I am done with Actemra, 1 shot per month for a year

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And, the opiates are a god-sent, if you have GCA-aches exploding in your head. That is a pain you do not wish on your enemies. The doc wasn't pushing them, btw. I had them lying around from way back when I spent 4 months flat on my back with a double un-diagnosed dislocated vertebrae.. Now THAT's a doctor I would wish would come down with migraines! It is not easy getting help for rare diseases anywhere, unless you're rich and cab fly the world to see specialists. What I understand from all the people back in Europe is that quality health care is falling apart all over. There may be a lot of ignorant doctors here, but at least they care, and finances are rarely an issue, for Health insurance is amazingly affordable and complete here. Besides that, we are all alone, having to ensure our doctor gets it right, lest suffer the consequences of our own ignorance.

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Dear Floyd, I was given Tramadol before I was diagnosed with PMR and it did not have any affect at all. When I started taking pred a miracle happened thank goodness.

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It is extremely unusual for PMR or GCA patients to be on pred for life - and particularly not at high doses. Most people are off pred in up to 6 years - without lasting damage. Opiates do NOT deal with GCA pain - and there are plenty of people on the forums who will back me up.

However - you obviously have your own belief system and I wish you well on it.

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Opiates do not? How is that possible? The world best pain killer, enough to kill you, enough to addict you within days? I do believe it will take a certain dose to make it work. I used Tramadol 400, as far as I know, the type of opiate that is used as a last resort, FE in the last stage of pancreatic cancer. I'd imagine doctors do not volunteer those pills to headache patients

I used it when I had a multiple vertebrae dislocation/inflammation. That is pain so intense you can't even breath without crying. Made life bearable for months, enough for me to self-diagnose, ignore all doctors who told me I had multiple hernias without hope and mis-read my MRI, enough to send for a traction bed to be delivered at home and stretch myself into an immediate cure within 5 minutes. What was the type and dose that was given to the members in this group, I'd like to learn?

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I have no idea what doses - I just know that everyone I know on the forums who are on opiates for other conditions say they don't touch the PMR/GCA pain.

They do not relieve the pain because they do not relieve the inflammation - and that is the crux in GCA. The inflammation must be relieved to ensure blood flow to the optic nerve is maintained. Without an adequate blood supply the optic nerve develops ischaemia a (lack of oxygen) and if it is severe enough it will die - just like nerve cells that lose their blood supply during a stroke also die and leave the patient disabled, even dead. GCA is, ultimately, a stroke o the optic nerve. It isn't the pain that is the main problem - it is the loss of oxygen supply.

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That is unbelievable, but it makes sense. I guess that, by the time I started Tramadol, the pain must have subsided already, and I been using it, thinking it covered a pain that already ceased to be there. I stopped coz it was suggested I stop, not because I felt the pain had become bearable. There was no pain. Once on Tramadol, nothing one thinks or concludes can be trusted no more. That is surely a fact.

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But, all I am reading about Pred not being the killer everyone tells me is hope-giving! I don't mind taking a pill everyday, if it doesn't make things worse. I will probably have to. My GCA is back, no doubt. 3 nights of night sweats, a bursting headache, and hallucinations. I am off to the hospital for a CT scan en multiple bloodtests today. Seems the Actemra does not hold in combination with 2.5-5MG Pred. I just hope the doc won't tell me to go back to 40MG..

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Is there anyone here with long-term GCA, that knows anything about CPR readings? Just came back with my blood tests. My ESR is down to 8 (!), yet I am in the middle of a big flare, including long night sweats, malaria shakes, hallucinations lasting 4 hours or more because of a messed up central optical nerve and a splitting headache behind the right eye. I am dizzy and it feels if something is living inside me that wasn't invited. The only blood reading that was off was my CPR, instead of 8 it was 8.45. Had a CT-scan with contrast liquid and nothing to see there.

What is going on here? What is happening to me? Why doesn't anything here make any sense?

Doctor advised I take my next Actemra shot, and I did, and told me to go to 5MG Pred per day. No further explanations received..

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Up to 20% of patients with PMR or GCA do not have raised acute phase markers: ESR/sed rate and CRP (c-reactive protein), a substance that the body produces in response to inflammation being present in the body.

If you have visual symptoms that are due to GCA then you are potentially on the verge of losing your eyesight. High dose corticosteroids are the only drugs that are certain to relieve the inflammation and restore the blood flow to the optic nerve before irreversible damage has been done. Actemra has not been shown to REPLACE steroids, it has been shown to work together with steroids to allow a faster taper to reduce the amount of pred required AFTER pred has been used to reliably reduce the inflammation. But high dose pred, up to 100mg/day initially for a few days, may be required to protect eyesight. Once severe visual symptoms have appeared the time is short and once visual loss has occured in one it is sometimes too late to save the other.

Your doctor obviously does not appreciate teh seriousness of the condition and is not clear of the way to use Actemra. A PET-CT-scan will not show anything much in the head - the brain takes up so much of the tracer it swamps what is happening with the inflammation. If it did, they wouldn't still be using biopsies.

You need to have high dose pred - and 40mg is absolutely the bottom end of the range, 60-80mg/day is more likely for someone with the sort of symptoms you describe.

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My God.. that is a massive difference in advise, from my doctors here! I am listening to you, though! I just took 40mg, and I will keep that up for 3 days. If I am sweats-free by then, I will see what's next. Taper down, I guess. Man.. this is a lonely place to be. Thanks for your urgent words..

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rcpe.ac.uk/sites/default/fi...

This is a paper written to help GPs and other non-specialists recognise and manage PMR and GCA after the diagnosis has been made by a specialist. You will see that a GCA patient needs to remain at the starting dose for at least a month - and the starting dose depends on the symptoms. Someone with symptoms that could be GCA but don't affect the eyes is started at a lower dose but still remain there for a month. This is not an acute illness like flu - it is an ongoing autoimmune illness like rheumatoid arthritis that makes your immune system attack your body by mistake. It usually takes at least 2 years to get off the pred - not because it is a high dose and you have to reduce slowly but simply because the GCA symptoms return if the dose of pred is reduced below the level that is enough to manage the inflammation. On average I would say that it takes 5 or 6 years for most people to be fully clear of GCA and pred.

GCA is probably not seen much in Taiwan - it is a rare disease even amongst the Scandinavian heritage Caucasians in Europe and the USA. But your current doctor hasn't looked at the international recommendations for the management of GCA, which he could have done, they are easily to be found on the internet.

Here is some more reading:

medscape.com/viewarticle/74...

pmr-gca-northeast.org.uk/us...

where you will find a link for the 2010 guidelines for managing GCA - the latest are about to be published but I don't think they are out yet.

These are the experts we base all our advice on from the charity - and it is all reliable.

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Do you mean CRP ? Mine was near 300 when I was in hospital last October it is now back to normal when it’s high it marks inflammation in your body. I am down to 10 mg steroids and also have Actemra 162mg I take this once a week. My main problem is how To learn I m not like I was (rushing around) and have to give my body time to heal. Hope you start to feel better soon.

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what is "back to normal"? Do you have a number? Looks like your country uses a different measurment

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Actemra every week? The Big tube, or the small tube? My word, you must have great health insurance..

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Like all drugs there is a right and a wrong way to use it - and in GCA the advised approach is weekly injections while tapering the pred dose from a starting dose of 40-60mg/day to a level that manages the symptoms. It may not be zero pred - some people require ongoing pred at about 10mg or less per day - and it may be successful in a matter of a few months or it may have to be continued.

The cost of self-administered weekly injections is quoted usually as less than monthly infusions - which require associated hospital costs to be covered for administration.

As to CRP, all labs will quote their normal range in brackets on their lab report with the test report. Every lab is slightly different but throughout the world CRP levels of less than 1 or less than 10 depending on the unit they use (per dl or per litre of blood) are usual.

I can only suggest you find a doctor who knows what they are doing and get onto a decent dose of pred - and keep the Actemra on ice for the moment. Get the inflammation under control. Then spend your money on Actemra if you must - but if you haven't got health insurance you are looking at IRO $17K per year as long as you need it. Pred is cheap as chips and it works reliably for almost everyone.

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It’s an injection RoActemra 162 mg .? I was going to say I am lucky but not to sure 😒

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CRP should be around 5 so I believe it was down at 1 recently and doctors were happy. A big difference to 300 😏

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OK, with mine on 8.45 last time, that's looks as healthy as it gets. How deceiving is that? ERS at 8 as well. Top notch, one would conclude, if it wasn't for that big flare happening all the while. Are there no better tests that bear more reliable markers?

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Thanks for all that. The Actemra is indeed too much, even at Taiwan prices for 350usd per shot I can not afford weekly shots like some. I have decided to go on a once a 3-week regime now. It is typical that my flares happened the 3 days before my monthly shot was due. Sure it isn't sure but I want to avoid running out completely in the fourth week.

I will stay on 40mg for a week, then taper weekly down at 5mg less each time. I gotta try that, despite all advise, as long as there's no flares. The pred simply makes life too horrible for me. Can't eat, no libido, can't be active and everything tastes and smells like plastic. That's not even including the foul smell my body has on Pred. As a vegetarian, my nose works better then some and that includes suffering from all kinds of smells that other people take for granted, or won't notice. Like the smell of meat, armpits, etc. The preds even make my farts unbearable to myself, let alone what they do to others. You may laugh, but I am used to never stinking, not even my socks, advantage of being a veg, maybe. Or a disadvantage, in this case, when I can't bear my own odor on pred. One can not get away from one's self to get some fresh air, haha!

In the meantime the 40mg pred has kicked in already. Starting to feel sick. But if it means I won't have an ocular episode tonight, it'll be worth it.

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Don't be too quick to blame the pred - many patients have commented about severe BO in the early stages of PMR/GCA. But even if it is the pred - as I see it smelling bad is rather preferable to being blind. You cannot manage GCA by brief high dose courses of pred. You will get into a yoyo pattern with the dose, dropping and allowing the inflammation to flare, needing more. Over time you will find yourself requiring more and more pred to get the same result.

If you don't, you will be unique. And that isn't something on which I would be willing to bet the question of my vision.

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Understood. So what would be your best advise, for a regime for me?

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Not our place to suggest drug regimens - but I gave you a link earlier for a paper providing doctors with advice on managing PMR and GCA

rcpe.ac.uk/sites/default/fi...

and that, together with your doctor (since you have to access enough pred), should be enough to start on to work out how to proceed. It is possible that since you are willing to pay for some Actremra that you may be able to reduce the pred relatively quickly but that is something you can only tell by seeing how your symptoms are as you reduce and neither I nor any doctor can forecast that. At the least though I'd say you need to be at 40mg for 2 weeks to clear out the existing inflammation - and 5mg reductions every 2 weeks would seem reasonable IF THEY WORK. But you have to wait and see.

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The link spoke of 60 mg prednisolone daily) reducing

over six months to 15 mg daily. I am at 60 now. I will drop to 40 tomorrow and keep at that until I am free of noticeable symptoms. Then a 5MG drop per 2 weeks. Actemra every 3 weeks.

It's a bucket of steroids, compared to what I was taking before, and even then.. by now I have gotten pretty paranoid about returning flares and this NEW tapering regime suddenly seems as fast as the one I had before. How quick standards can shift, once you get punched in the stomach. I am convinced I'd be on a prednisone IV somewhere in a hospital now, trying to save one eye, if I hadn't received better advise in time.

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60mg is for patients with visual symptoms, 40mg is enough if you haven't. Try 40mg - but if the symptoms return, back to 60mg is what you will need I'm afraid.

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Day 3, 60mg as planned, night 3, heavier night sweats then yesterday. Feeling good, though. Shouldn't the night sweats subside after 3 days of heavy preds?

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Not necessarily - pred causes them too!!!! You are between the devil and the deep blue sea...

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what?? Pred causes night sweats? Not a small thing for the doc to not tell me. I thought the sweats were the only safe indicator that my GCA was high..

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Day 4, had a bad night. A little less sweating, but poor sleep, and too little. Woke up dizzy and too vague to drive the kids to school. I don't feel I am seeing too clearly today, but I got to expect this is nothing but lack of sleep, and maybe the high dose of preds. I will lower the preds to 40mg today. Also went to see a Chinese medicine doctor today. naturally, he had never heard of GCA, so I told him the story, then told him to ignore the story and focus on anything that can help with vasculitis. He gave me a herb mix and a sheet of contents that I need to translate and research. He also suggested that the ailments I had 3 years ago, when I first visited may as well have been onset GCA. 4 weeks of extreme low blood pressure with no visible cause, unable to drive, think, or walk in a straight line. Saw 3 hospitals and 6 doctors. No answers. Fever bouts with no explanations. It wasn't anemia, but I still received a B12 IV with no avail. The Chinese doctor I visited in the 4th week gave me a herb mix that cleared everything up within 24 hours. I have never been a herbal-believer when it comes to serious afflictions, but that was pretty impressive. Who knows, I may get lucky again..

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Day 5, 40mg, plus the anti-inflammatory herbs from the witch doctor. Had a near sweat-less night, reasonable sleep. Woke up to pee in the middle of the night, as usual, and also early morning, with a pain in my bladder-tract that lasted several hours. Spent today dizzy, seeing the world with a 1-second delay each time I turn my head. Feels like low blood pressure, low sugar, but eating sugar does not help. Had lunch, but was hungry again 30 minutes later. Had food during the day, still felt hungry, and remained dizzy. Not sure why. Stuffed myself with way more food then I normally eat during dinner with an array of veggies and patatoes and finally felt a bit better. Is this a steroid thing? Feeling hungry after food? Does one need to eat more then usual on preds, to avoid dizziness and hunger? Thought I might faint on several occasions, simply by standing around in a shoe shop.

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Feeling hungry is a pred thing yes - that and a change in way your body processes carbs is what leads to weight gain. Cutting carbs a lot (perhaps not entirely) will help usually - protein and fat are the good guys.

If you have GCA, then you have a serious systemic illness. If you had proper influenza, would you be surprised at how you feel? That you felt faint in a shop after standing for a while?

I really would be so much happier if you had a doctor who would phone a friend if they didn't know what was going on. Are there no doctors who have worked in Europe previously? Fair enough it is no common in your neck of the woods - but a guy in Japan was diagnosed quickly and is managed very well by his oriental medic.

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We have been looking, and are still looking, but this is a small country, and internet covers all. Found nothing, bar 1 Taiwanese female neurologist in Taipei who wrote a little about GCA when researching various headaches. The idea that she may be a solution is bordering on despair, but we'll give a a call still. I kind of have given up on getting help outside this forum. If the so-called top GCA doctor here knows nothing, what should I conclude about the state of the others?

Taiwan has 23 million, Japan has 150 million people, and quite a bit of hidden Russian/Kaukasian DNA, compared to Taiwan, which is virtually pure Mongol. So, Japan actually has some GCA cases to handle. Hence the odd doctor here and there.

BTW, night 6 was busy, with a wheezing baby keeping us awake till the early morning. Sunny side of that was that I had no time for sweats once I dozed off at 0300.

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Day 6, difficult to judge the night if your baby keeps you up till 3. Tonight would be the last night she wheezes, so tomorrow I can sleep again. I remember some sweats around 0500, but it wasn't much. It was the second day of dizziness, btw. Found that it can be avoided by eating larger meals. Used to skip lunch, did so for years, but that is no longer viable.

But a new symptom arose late last night, and doesn't seem to subside. All the strength I used to have in my upper legs and hips seems to have been replaced by a splitting , burning pain in my hip muscle, or joints that came out of nowhere. I have but 20% strength left and even still, the pain is there. I walk like I had polio. Can anyone tell me what this is? A few weeks ago I was fit enough to climb a mountain, so I have no history of joint or muscle pains, and surely not to a point where I can not carry my own weight walking standing up.

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It could be trochanteric bursitis - but I'm surprised if you are still at 40mg which should be more than enough to cover any PMR-type symptoms with the GCA. That is something even your doctors should be able to identify though.

Have you been doing steps a lot? But the stress of a baby keeping you awake all night won't be helping!

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It was a day like any other, with very little activity. That's what s odd. Still taking my Preds. I will check with my physician. That much he should know.

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Day 7. Had a good night. No wheezing babies after 0100 and no sweats I can remember. The inexplainable pain in my hips and knees is still there, be it that I felt the peek-pain missing from the pattern later in the evening. This morning I am at the same pain level as last night. Less then half of what it was originally, but no strength was regained. I can not hold and carry a baby 2 steps forward. I walk like with an invisible Zimmer frame in front of me. It is like there's too little signal to "walk'n carry" going from my cortex to my upper leg muscles, resulting in utter weakness and pain from overusing the last couple couple of muscles that are still getting signal. Hopefully that is not the case. That should normally go with serious lower back pains, pressing nerves, but there's none of that. Hope the doctor can see me after the weekend.

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So do I!!!!!!

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Same day, and by now I am quite sure the loss of muscle in my legs is neurological, like an inflammation of an essential nerve in the lower spine, or a blockage in my head of some sorts. Symptoms come and go for no reason, especially the going away for 80% part being the tell tale sign. Also, I am simply unable to move legs at a regular possible speed. The signal I send simply does not arrive at the same speed, it's not just the pain that slows it down. Brief, it looks like partial paralyses.

An inflammation of the joints, or Bursitis does not disappear and return completely 30 times a day, leaving only a slowed-down movement capacity.

Also, nmew symptom, but a familiar one.. My temporal arteries visible for about 50% both left and right.

No ocular events, and no sweats last night. My doc is gonna be even more confused with these new symptoms tomorrow, considering he prescribed 2.5 pred per day in the second month of my diagnoses. I will have to set him straight, and hope he takes it well. He will need to read a book and start doing his job. Me, I stay at 40 pred for now. No idea what else to do.

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No - can't argue with that.

But I would suggest an MRI and a neurologist getting involved - even if only to rule things in or out. We can only make basic suggestions on the basis of the diagnosis given and otherwise you need a doctor.

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Yes, had planned to ask for an MRI. I find a little comfort in the fact I went from burning pains and near paralyses yesterday, to being able to walk around carefully, as long as I walk funny.

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Day 8, and I'm back from the Emergency ward...all day. The night was fine, but still had the paralyses issues, without much pain, during the morning and noon, while sitting, waiting for the MRI and the doc. Saw neither. They refused the MRI for lack of credible, tangible symptoms. Sent a student neurologist to do the standard array of physical/neurological tests, and the concluded it was myopathy. Need to study what that means. They offered to admit me for further observation, but I passed on that offer. They said they ruled out spinal abscess and arterial thromboses in the spine. Brief, I still know nothing about what this is, but on the good side, all symptoms are getting less quite fast. I am back at 60-80% muscle capacity, with only annoying pains. ER doctor scoulded me for tricking him into giving me 40mg pred, after reading on screen that I am officially set to 2.5mg. He admitted never have seen a human with GCA, just 5 minutes before that. Gotta go back in on Tuesday, to see "Mr. 2.5MG"

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"Myopathy" - if it is already improving: b*££*cks! High dose steroids can lead to myopathy (muscle wasting and poor function) but rarely in 6 days. Nor does it recover in 2.

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That was almost exactly what I told her, hoping for a correction, addendum or otherwise anything made of sense.

Day 9, no sweats and my legs are back to 95-98%. No popping temporals, nothing to report. Still at 40 pred, wondering when I should start tapering. My gut tells me to go slow, let this symptom-less period last for a few days.

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Give it at least a couple of weeks with no/minimal symptoms. Then TRY 5mg. If it doesn't work well - try 2.5mg.

I bet you had a 24 hour flu thing...

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Haha!- `

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Missed a few days here. Been on holiday with the family, first time for all 4 of us to leave the country. Did Saigon and Bangkok to see Doug Stanhope's Asia Tour. Great fun for small budgets!~ Also, it allowed me to ingest very high doses of weed for 10 days, morning till night, something that made me feel lots better, both mentally and physically. Had a lot of blurred distance vision, though, and not sure whether it was GCA or THC doing this. Playing video games seemed to wear my eyes down real fast, no matter playing on a small screen near by, or a big screen at a distance.

My bet is on the THC doing this. I was pushing the dosage to the point of not having enough hours in the day. Instinctively, my gut told me it was harmless so did not cause me to panic or worry much. It did not cause any of the one-eye issues like I had before. Those are scary, for they feel very different, unnatural and bring dizzyness, visual delays and such.

Anyways.. Day 9 to 19, is it? Still on 40mg when I left for Saigon.

I hope you understand I am not trying to be exhibitionist here, just keeping somewhat of an record for those that come AFTER me. Maybe some of this writing end up being useful to someone, just like much of this website was -and is- useful to me.

New symptom: It may also be an old one in a new place. What happened to my legs before, suddenly happened to my left wrist on day 12. Loss of 50-80% of my strength, replaced with pain whenever I tried to use that hand. It lasted 3 days, just like my legs, and made full recovery, as if it never happened. I also had twitches in my legs again, a reduced version of what I had before. I'd be walking roadside, supple and elegantly and out of the blue I'd feel my strength failing, pain setting in, instantly disturbing my capacity to walk normal, forced to compensate. They'd be 30 second to 1 minute episodes, after which they'd disappear again.

Day 15, switched to 35mg preds. Noticed that my body odor goes back to normal at 35mg, where at 40mg I am literally tossing shirts in the garbage.

Day 16, New symptom: Extreme bloatedness of the tummy. Very uncomfortable and always there. It just arrived in the morning of day 16 and wasn't going anywhere. Tried Omezol/Omeprazole, but since it isn't an acid thing, no avail. I looked like a balloon, absolutely unnatural. When it didn't subside on the third day, I googled some home remedies and found online articles telling me to take pro-biotics. Guess what? They work! Bought an over-priced 10-sachet powder pack in Bangkok and took 3 sachets before going to sleep. Delayed the preds till midnight as well, trying to offer as much time to my tummy to recover as possible. Took another bag in the morning, before coffee, and another bag after coffee. Made sure I ate well, avoiding even the little sugar I sometimes ingest in a snack. By the time it was afternoon, all problems quickly started to become less. I made sure I was getting enough body activity by spending the day with the kids in the pool. Great combination, it seems. My word..deflation can be bliss! The thought of feeling bloated like before, for years to come, is unbearable. I feel for anyone who is stuck like that. I sure hope I can thwart that fate. Took another bag before sleep, together with the preds. Day 3 of this treatment I am at 20% bloating, which is pretty much where I was before things got bad. I don't think it will become less then this as long as I am taking high doses preds, but it has become very bearable. If you haven't tried it..try it!

Day 17 till 19. Pretty uneventful, which is good. All in all, my night sweats have not disappeared. I have them around 4-5 o clock at night, but now I sleep right through them, just to wake up with a wet pillow and a wet blanket around the neck area.

Tomorrow is time for my Actemra again. Decided to go on a 3-week interval regime, based on the fact that twice over I re-flared in the 4th week of the interval, so by shifting to 3 week intervals, maybe that re-flare will no longer occur. I also insisted the doctor read up and study GCA in my 10 day absence, and come up with a regime, a plan of some sorts. Needless to say, I am not holding my breath.

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Day 20 to 26.. Still on 35MG. The bloating was still threatening I found the pro-biotics effective, but with that high dosage, costly in the long run. I received a big bag of simothecone from the doctor that I have not taken. Decided to try a certain type of fungi instead, One that grows abundant here: stropharia cubensis, rich in alkoloids, fresh, chopped, about a tablespoon per day. It causes a little cramping that can be avoided on a full stomach. Found that the bloating does not return when I take this, and it's supposed to have strong anti-inflammatory effects as well. Going 3 days now. Noticed my temporal arteries have not been showing themselves for 3 days. See if that holds. Also ordered the 95% curcumin online, and will take that as well.

I still find my left eye sees double a lot, not spontaneously like before, but surely later in the evening when I am tired. I wonder if should worry about that. I often think the preds are not taking hold properly, and it's pretty hard to judge properly. That is why I am looking into more organic supplements.

My diet , next week, when my mail has arrived will be as follows.. Morning, coffee, bread, eggs, banana for potassium, 2x multivitamin, 2x calcium, Chinese herbs, curmunin, fungi, and CBD. Lots of veggies for lunch and dinner with a regular dose of carbs to avoid binging later on. Midnight, 35gr preds. Like it has been for a while, no hard liquor, no more beer or otherwise fizzy drinks. Just juices and red wine. Found that only red wine does not make my veins pop. Other booz does.

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I just checked some stuff, and I fit all the symptoms of Myasthenia gravis, Class I. In about two-thirds of individuals, the initial symptom of MG is related to the muscles around the eye.[9] There may be eyelid drooping (ptosis due to weakness of levator palpebrae superioris)[12] and double vision (diplopia,[9] due to weakness of the extraocular muscles).[10] Eye symptoms tend to get worse when watching television, reading, or driving, particularly in bright conditions.[9] Consequently, some affected individuals choose to wear sunglasses.[9] The term "ocular myasthenia gravis" describes a subtype of MG where muscle weakness is confined to the eyes, i.e. extraocular muscles, levator palpebrae superioris, and orbicularis oculi.[12] Typically, this subtype evolves into generalized MG, usually after a few years.[12]

Does anyone know anything more about this?

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the next stage, Class II, is where there is sudden muscle loss in other areas of the body.. I had both legs, and a left wrist episode.. How to find out if that s related to this..

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In the light of these new theories, and in the absence of an actually trained doctor, I decided to make an appointment with a professor/doctor/rheumatologist in the capital, a lady who has written and published about GCA. Let's hope she may shed new light on things.

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Now THAT sounds like a plan!

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Don't be holding your breath here.. It was a small article she wrote. Gotta find out what exactly she knows first before celebrating..

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A friend has Myasthenia Gravis and initially he had a lot of problems as I am not sure his GP knew much about it. He then went to see a consultant who put him on steroids and he has not looked back, he says it made a world of difference. He takes pred every other day.

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MM.. I am already on high preds, so how do I treat this? Simply continue and wait for it to pass?

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Without steroids, his muscles just were all over the place, he could not drive and his face muscles had just collapsed. His sight was bad too.

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Day 27 to 30, 35mg

New discovery: Smoking increases my double vision, blurred issues and not a little bit! I quit the ever-alluring ciggies and switched to a little vaping. My sight went up 60-70% within hours. I am not going back! Still.. what the hell is going on with my oculars veins that I can't handle the little vein shrinkage I have handled for 35 years of smoking? I really do not like to admit this, but not smoking with GCA is a an issue and the benefit seems without discussion.

New discovery: The tryptamine/alkoloid containing stropharia cubensis fungi that I had been taking for 4 days has not offered any lasting relief I can bank on. My bloated stomach has not returned after the 4 day try-out, but that may yet return any time.

Had no visible arteries popping for 3 days, but then saw them on day 4.

The alkaloids wreaked havoc on my tongue, now apparently without any biotic culture, and hyper-sensitive to everything.

The mild hallucinogenic effects that are part of eating this organic, but non-isolated mix of ingredients can bear heavy on the mind as well. Not for the mentally unstable. I can not advise taking these high doses for this affliction. If anything, a much lower dose, over a longer time, just to improve a couple of markers, may be a better idea.

I noticed no sight improvement, , no worse or less night sweats, but on day 4 it felt as is my loss of muscle in my hips was going to return, threatening to pounce at any time.. which it didn't.

Old issue becoming a new one: Eating! I find it harder and harder to control my eating. The cravings seem to be getting stronger by the day, and I am starting to gain weight! Tips, ideas and tricks are appreciated..

Until now, I have been focused on ingesting an array of anti-inflammatory organics, but what if my inflammation is already at the best bottom levels I can hope for? I should start investigating auto-immune boosting agents now.

Return of old symptoms: Low BP and dizziness. Found myself rushing to the hospital once more for tests. Had lots of food during the wait at the doctors and found myself fit again before I got to see the doc. BP 102/61 After food. Must have been 50+/90+ before food. No doctor has ever been able to tell me what makes my BP drop like that. A well-known issue, traceable to 8 years ago, when I had it for a month. It's been coming back yearly. Just had 2 spells in 2 days, one in the morning, from 0800 to 11.30, and another the next day, coming and going at will. Went for a 5 KM walk down the mountain that day, desperate to rid myself from all of that. Found that eating a bit of super-sweet candy cleared up my view within minutes, but couldn't keep it up for more then a few minutes. The exercise raised my BP no doubt, but was equally dizzy with double vision all the way down the mountain. Found maybe a 25% relief from those activities, at best. Dropping the cigarettes with some exercise, I bet I can get 80% relief in a few days..

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Not VEINS - it is ARTERIES that are the important blood vessels here. This was my husband's clinical research field and he did a study in smokers that showed within a minute or so of the first inhalation the arteries, particularly the smaller ones, had contracted enough to severely reduce blood supply and, hence, oxygen and other nutrient supply to the tissues. I'm also not really convinced vaping is any better, we aren't sure that it isn't the nicotine that does it so the potential is still there.

If you are popping carbs to deal with the low BP attacks while on pred no wonder you are putting on weight. It is also likely to contribute to wild swings in blood sugar levels which can have a similar effect. CUTTING carbs drastically will help avoid weight gain and also smooth out fluctuations in BS you are adding to by eating sugar - the BS rises quickly, triggers insulin production which sends the BS level crashing down and makes you crave sugar to bring it back up while leaving excess insulin floating around which causes deposition of the excess glucose as fat. Adding protein to any carbs you must eat will smooth the sugar rushes some too but cutting carbs is the best approach.

If you have an autoimmune disorder then it is generally advised you DON'T use "immune boosting" supplements - your immune system is already in overdrive.

No nicotine and some exercise is likely to be helpful.

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I have had a long standing habit of cutting carbs, but these months it feels as if I can no longer handle such low levels, and that this is what is causing the low BP.. Can that be correct?

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I don't think it is as simple as that. If you don't eat much carb your body learns to metabolise the fat to produce the energy it needs. If you start eating much sugar that will take your body out of ketogenic mode quickly and for several days if you eat more than a minimum. If you must eat carbs - don't eat candy, eat compex carbs. You may need to switch slowly though to keep your BS level more steady.

This might be interesting for you

mayoclinic.org/diseases-con...

But I really really think you need some serious medical investigations. All these things may be adding up to suggest a concrete diagnosis.

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Hoping just that tomorrow, heading for the capital. I suspect they will keep me admitted for a while, but let's see.

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Day 31 to day 40. Quite a bit of stuff happened. A week ago I went to see a specialist in the capital, who knew even less about GCA then the others. He was a bit rattled about his colleagues not finding a source for my troubles, so he ordered full blood work again, this time included on my advise, a blood platelet count and vitamin check, after which I was sent home, instead of being admitted for observation. National holidays were up, and all doctors nationwide would not be showing up for work for most of the week.

Went home, and spent most of the week not trying to lose it, with double vision, low BP spells, dizziness and the regular annoying issues.

I hoped that quitting the smokes would have helped, but the issues all returned like before, barely 2 days later.

Yesterday it was time to return to the capital, to check the blood results, and to see that lady GCA doctor I spoke of. She was a bit taken by my idea she knew anything about GCA. She clearly did not, but she lent me a good ear, trying to find a rare or common diagnoses to the list of new and old issues I handed her.

She ruled out Gravis logically, which is good news. She noticed the symptoms all matched Migraine Aura, but there is no headache to speak of here, only the Aura.

She noticed that my LDL had gone to 183, a huge shocker for me, for I am a vegetarian, I don't do sugar, I eat lots of healthy stuff, eat moderately and I am no more then 3 or 4KG overweight, barely noticeable with my length and age. Still, the steroids boost LDL, I drink lots of Latte's and eat eggs every day. Had more then a year behind me, drinking several cans of beer per day, rather then my regular single malts. All of that must have done it, for I never heard my LDL being anywhere but at healthy levels, with all the blood work I have had in the last 8 years.

So, the LDL fight commences.. Sterols, garlic, green tea, my regular olive oil, fruits, nuts and berries, fish oil tabs, raw cacao, whole grain pasta, soy, red rice yeast extract and garlic. Non-fat dairy only from now on and no more egg yolk. If I can't bring it down ASAP, I'll need to choose between preds or LDL. Not a funny choice. Not sure I should be trying statins right away. What do you guys think?

Doctor found my B12 a little low as well, and gave me a booster shot. I am now in the second day after that shot, and I swear my vision has improved by 50-75%. Could this be the cause? I know the symptoms match, neurological breakdown at low B12 levels, but my levels were only a little off. Guess it's possible that I, as a specific person, need them to be well above the minimum levels to function. I really hope this is it, just like I hope there's no eye nerve damage from that long lack of B12. I still can't do more then 10 minutes of video games without causing a blur, but at least there is only a little blur during the day, as long as I don't strain my eyes too much.

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Dietary cholesterol, especially that found in egg yolk, does NOT affect blood levels. It is your liver producing it. In fact, eggs are felt to IMPROVE cholesterol levels. The role of dietary cholesterol is - if you will excuse the pun - greatly overegged!

If the B12 shot helped - see what happens then. Is another planned?

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I'll check the egg thing, for sure. But, LDL needs to come down.

Seems the B12 was not the magic potion. Double vision is back since a few hours. Back where I started. Had planned booster shots for a while, and I will, still. Maybe I should see a string of eye doctors, see if any of them can come up with an idea. The dizziness and BP swings have not returned, though. That's still one symptom less.-for now. In the meantime, all of this double vision is getting soooo old..

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Wait.. are you saying that all cholesterol in food stuffs does not affect blood levels, or just egg yolk?

So, if the liver turns egg yolk into cholesterol, aren't we talking about the same difference here? Don't eat eggs? I am confused..

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It is next to impossible to influence your cholesterol level with diet unless you were eating massive amounts of ALL types of fats beforehand - the sort of amounts that would cause your blood serum to be cloudy because you ate so much. That is something that happens in the familial hypercholesterolaemia disorder - that is purely genetic - but really really bad diets can do it too. Even if you ate a zero-cholesterol diet, your liver would still produce cholesterol because the body requires it to function. It is other forms of fat you need to look at - especially saturated and transfats:

heartfoundation.org.au/heal...

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She says 6 eggs. I probably eat 10 a week, never more, maybe less... I checked all the LDL causing foods, and the HDL foods as well. I am eating pretty good, according to all of that. So what to do?

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My mom has B12 deficiency as well. When it drops too low, she gets booster shots, 3x a week. I may try that for a week.

Also, it seems that there's 1 in 300 people that simply produce bad cholesterol despite anything they won't eat. Statins galore for them. I am in some other top group.. vegetarian, alcoholic and 50+. Need to find out more.

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The 1 in 300 is the familial hypercholesterolaemia I mentioned - but their cholesterol is probbaly twice yours, or even higher. That is something completely different.

Don't worry about it - accept it is a side effect of pred and will go away as you reduce your dose. My cholesterol is probably a bit higher than yours but my HDL is also extremely high - and the relationship is also important. There has been a lot of scare tactics used about cholesterol - and the truth is probably that cholesterol is not the entire cause of the supposed risk and that statins change something else that achieves the claimed reduction in risk. The reduction in cholesterol is coincidental, a surrogate indicator it is called. If your other cardiac risk factors are OK, don't panic about the cholesterol. Statins also come with strings attached and one is that they cause muscle and joint pain are are even credited with triggering PMR. Hence the reason many of us on the forums refuse to take statins.

Ancel Keys was the researcher who came up with the "cholesterol is bad, low fat is good" belief - work that was very biased and with some serious fundamental flaws. It was latched onto by the food industry because producing low fat food meant they could increase their profit margins by using increased sugar and other low quality stuff. High fructose corn syrup in particular is very cheap and allows the production of baked goods that are moist and keep for years - not just days or weeks. Big profits... Keys did work in the spring in several selected Mediterranean regions - he found that in Cyprus, for example, they had very low rates of cardiac disease and - during the period he did the study, they ate very low amounts of animal fat because it was Lent. No self-respecting Roman Catholic eats meat in Lent. So his figures were flawed - they were based on a false assumption: Cypriots eat low amounts of animal fat. They do for 7 weeks a year, the rest of the time they eat a lot of meat! A LOT of meat! Southern France which was included ate a different diet from northern France which wasn't included, neither was Germany. But in fact although their diets are very different the rate of cardiac disease was similar. But the diet in northern France and Germany didn't fit with Keys theory - so he ignored them.

Stop worrying about it - because stress feeds all these autoimmune disorders.

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Thanks for that input. My low BP is a a good thing, I hope, with this high LDL. However, I am thinking that there may be a relation. LDL-Clogged arteries in my eyes, combined with GCA, causing this double vision. As we speak, I feel my left eye different from my right eye. left is not comfy. Left and right have been simularly hazy for 2 weeks, but now my right is clearly better then my left. I am not sure what to do. Doctor says that my blood work shows my GCA is no longer causing this double vision, the markers being at bottom level. Would a quick visit to the eye doctor for a full check up be wise, like, right now? Eye pressure and such?Would a dose of statins maybe reduce these levels quickly, and offer my eyes some relief?

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Bunged up arteries aren't something that happen suddenly just because your cholesterol level rises - it happens over years, many years usually, unless for some reason you have a blood clot that causes it as in a stroke. The retinal arteries are probably not what is leading to double vision - that could be a muscle thing, not focussing properly, or a brain thing, not interpreting the signals correctly.

But a thorough check by an eye specialist would be a good idea. They should also know about GCA - in some countries they manage it. You need your eye pressures checked periodically when on pred - it can cause increased eye pressures, not always, but it can.

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Back from the eye doctor, we may have a diagnoses.. It's a rare combination of factors, part GCA and steroids, part personal habits..

My house in the jungle is very small. Living there with the wife and 2 kids, AND an office, has forced us to make concessions. One of them is that our living room serves as a bedroom, and there's no room for furniture, only a large mattress. I project the computer screen onto a wall, 3 meters in from of me, a screen that is 7.5ft by6 ft. With the over-sized hifi system, that makes for the ultimate man-cave, no doubt, but now imagine being on that bed, working online, every day of the week, 12 hours a day, for 4 years straight. Thousands of hours, eyes always focused on a brightly lit surface 3.3 meter distance. It has caused a weak spot in my eye muscles, whenever they are told to focus for too long on anything 3,3 meters away. Without the GCA, it would have gone unnoticed for a long time, but my eyes are not young, fit and healthy now. The preds, the GCA and the eye muscle spasms (the doctor calls them) together cause a rather early fatigue of the eyes, resulting in the inability to focus at will.. The doctor said my description of the details made for a clear diagnoses, especially since I am able to see clear whenever I can super-relax my focus, rather then to see clear when I DO focus. I thought that made no sense, and it was supposed to be the other way around. But no. Fatigue!

Naturally, he did an elaborate check of my eyes, and found no issues in any part of my eyes, but warned I will be in for an early cataract if I didn't start to wear sun glasses. There is a mild onset. The light-sensitivity I have experienced for a month is damage done, and it needs to slow down..

Doctor said this eye fatigue should pass once the preds and the GCA are down. In the meantime I should focus on not focusing on any surface for too long. Switch it around for a second, close by, far away, close by, etc. Spend more time outside, less in front of a screen, he said. I am doing just that, and yesterday already felt relief. As long as I mind the rules, I am apparently OK!. Broke the rules late in the evening, playing a video game for a few minutes when I should go to sleep, and the double vision immediately returned.

Doctor gave me B12 drops for my eyes.. Never knew they existed!

So, double vision issues are explained and could be mostly avoided, but what of the paralyses, the low BP and extreme dizziness?. Well, they have not returned in their old form, after the B12 shot.

Could not get a booster yesterday, but will try to get one today. If I even make it to Sunday without a spell, to me that shows B12 was the culprit all along. It could easily have been too low for a long time, adding to the neurological/optical issues I have experienced.

This leaves one bitter unresolved issue, now suddenly up for debate.. What we seem to know now about the various reasons for the very scary ocular issues, what part of those issues were actual GCA nerve-inflammation issues? How much prednisolone have I taken that I did not need to take? I am at 30 now, and I really want to get to 20, quite prepared to take 20 for a long time. Neurologist in the capital told me that most, if not all side effects subside at 20mg.. I don't think there's a doctor I can find here that would be able to answer this with any real backup.

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day 43, 30mg preds.

Went to get a booster shot B12, and got myself some comfy sunglasses. They sure help! Driving is so much more comfortable now. Trying to wear them while working the big screen as well, see whether that makes an improvement of some sorts, or whether the fatigue returns unfazed.

All in all I am feeling better for now. A feeling of control, knowing what's up, has returned. Less worries about eye issues make a big diff.

Next up is my Actemra shot, due tomorrow. I am sure tempted to enter a new taper regime, where I drop 5MG each 3 weeks when I get a shot, in order to get to 20mg a little faster.

Also need to start cracking down on carbs even more. Found myself 3KG heavier today then I was Jan 1

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I don't think I would worry too much about the pred - you WILL get to a much lower dose and it is cumulative dose that causes most longer term effects - that said I have none we can identify despite being at WAAAAYYYYYY over 20g cumulative dose.

What a shame an eye specialist didn't occur to us sooner!!! In the UK people would go to an optometrist (optician) who can do all the examinations and sends people to the hospital if there is anything amiss.

All the best now for the B12 having been a culprit too!

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day 47, 25mg preds, after receiving the 3-weekly Actemra shot.

day 48, noticed the absence of night sweats, for the first time in weeks. Double vison/eye fatigue still coming and going, but manageable if careful. Haven't seen a temporal artery in over 2 weeks. Still getting B12 booster shots and have had no more dizzy spells or other weird issues. So far so good. Lost half a kilo in a week and had new blood tests yesterday, no results yet.

None of the many supplements I ordered online have arrived thus far. Postal strikes and whatnot. I expect all to arrive this week, after which I will start keeping track of any or all effects. Must say that there are not many strange symptoms left to cure as of now. Wouldn't it be great if the CBD, or any of the other supplements could help my iris muscles from spasms.. We'll see.

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Day 56, 25mg preds, and the supplements arrived.

After all the apparent improvement, I have once more been beaten down by GCA, the lack of doctors and my own stupidity..

First, I forgot my preds before going to bed a few days ago. Found out the next day, around 15.00 and took the preds then. Moved the next dose from 24.00 to 0400 in the morning, and the third dose at next midnight again. I am not sure any of this ended up making a difference, but it did not help me deduct what was the reason behind the issues that were to follow.

All my supplements arrived.

-Lysene, but pills with fillers, not just the actual powder.

-Curcumin capsules

Vitamine B12 pills

Omega 3 gels

10ml CBD 25% tincture, diluted 5x into 50ml vaping liquid

Calcium+D3 tabs

Beta Glucan powder

Plant Sterols

Multi-vitamin pills

pro-biotic mix pills

Anxious start my treatment, I started vaping CBD for several hours, tossing all tobacco products out of the house.

I then took a full dose of each supplement. Big mistake!! Within an hour or 2, I started feeling weird. Something unwanted was running through my veins, I could feel it, just like the minutes before you realize you have food poisoning, and you are about to either faint and/or vomit, triggering instant panic. I had a sip of whiskey, and felt like there was an allergic reaction to alcohol in my body. Then I felt my brain was losing it's grip over my system. I could feel an ocular event drawing near, and so it did, 10 minutes later. Full blown GCA-linked ocular nerve stroke symptoms with visual echoes, holes in my view, electric twitches, VHS-tape effect and a pulsating spot in the right top corner of my right eye. It was very scary, and very disappointing, for only hours before that I was telling my wife it had been a month since my last event.

Luckily, it was one of those famous 10 minute ocular events like I had had 5 times before since January, and not like the one time in March where I spent 4 hours like that, awaiting to fall asleep. This time around it all passed rather quick, and I wrote it off a just another re-occurring episode that was over due.

The next day was basically a repeat of the previous one. Same story, all the supplements, the allergic sip of red wine, but all of it much later in the day, end I ended up having an evening from hell, feeling worse then the day before, with a new found itching tension in my chest, palpitations they are, I guess. Felt like my blood was rife with adrenaline, but some type that is stable, constantly there. When I felt my next ocular attack was on it's way, I hid under the blankets for an hour, trying to sleep it away. It worked pretty well. Still couldn't sleep from the tension when it was actually my bedtime, and I found myself in Limbo, not knowing whether to walk the dark jungle at night, hoping to relieve the tension in my blood, or whether to go to the far-away, brainless-student occupied emergency ward for blood tests that would not be done til the next day anyways. I decided to stay in bed, in the dark, and fight off the panic attacks that were torturing me.

Today is day 3 of the Supplement Story. I decided to go cold turkey on everything. Take the preds, nothing else. No booz, no ciggies, no supplements. Went online and re-checked all the pills I had received for contra indications. Found out the Lysene is crap in this tablet form, and tossed them out. Found out I can not be taking Beta Glucon when on Preds or TMZ. Tossed that out as well.

Found out that CBD, even though perfectly safe by itself, DOES temporarily slow down the speed by which the liver can process medicine. It is fine if you leave a 2 hour gap in between CBD and other medicine, but not at the same time. One would expect to read that on the front page of every CBD selling website, but no. Very important, and very hard to find out!

Here I was vaping CBD back to back, while filling my system with an excess in tablet/supplements, even adding auto-immune triggering supplements like Beta G, whilst my liver is virtually asleep, raising all kinds of hell in my system.

I have gone over all the stuff I bought, and I will take my supps in stages from now on. Well, starting Monday, if all indeed has calmed down.

pro-biotic mix pills before breakfast, and all the others after food. Omega 3 gels

, Calcium+D3 tabs

, Plant Sterols

, Multi-vitamin pills

.

Week 2, add:

-Curcumin capsules

, Vitamine B12 pills, after my last B12 booster shot

CBD vaping will have to be thought through. Need fixed daily windows for that, when I am sure my liver has nothing to do but sleep.

Still, all of this is pretty much a full re-flare. The heaviest night sweats since 2 months, ischemic events twice over in 2 days, tension, dizziness, headache, fatigue.

I have not raised my preds for now, still at 25mg. If things go haywire today, I'll go back to 40, but I sure hope to avoid that.

Called Actemra USA today for information. They refuse to tell me anything. They want me to call the idiots at Roche Taiwan, the very same people that could not explain to my doctor in Zimbabwe how to operate the Actemra auto-injection pen. All I want to know is.. how much pred should I take, and how long, with GCA and Actemra. Not me specifically, but what are the international standards? And, did the Beta Glucan somehow negate the Actemra shot I was given this Monday? Should I have a new shot?

It'll be a bloody miracle if those Actemra deadbeats in Taipei actually would contact me as promised.

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You take a normal dose of pred that works for you and then taper the dose while using the Actemra. Everyone will be a bit different so I doubt there is a standard taper for general use, there was one in the trial:

ncbi.nlm.nih.gov/pmc/articl...

See Table 3

I don't know what the results were - so possibly a faster reduction is possible.

But reallly - I think you are messing about with too many unknowns and I find it rather concerning. Of course they won't tell you much - it's covering their backs.

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Well, where Roche USA and Switserland turned out to be very annoying, there was a rather satisfying answer from the Taiwan office..

Q: What should my prednisone taper look like?

A: 2010 BSR and BHPR guidelines for the management of GCA indicates the standard prednisone taper should look like as below 1:

First, 40-60mg/d prednisone for 2-4 week, after clinical improvement, taper prednisone dose by 10mg every 2 weeks to 20mg/d to reach clinical stable of GCA symptom.

If patients treated with Actemra with prednisone taper, phase III trial indicates that sustained remission at week 52 occurred more than half of the patients treated with Actemra weekly or once every 2 weeks in combination with 26 week prednisone taper from 20mg/d to 0mg/d. 2

As EMA and US Package Insert mentioned, the recommended dose of Actemra for GCA is 162 mg given once every week, in combination with a tapering course of prednisone. 3,4 Prednisone taper with Actemra should depend on your disease activity, please consult with your physician.

Q: How long should I been taking Actemra?

A: It should be determined based on your disease activity, phase III clinical trial results only show that after having Actemra plus a tapering course of prednisone for 1 year, more patients stay in remission and need lower doses of prednisone compared with patients having prednisone alone.

Now, there is a JPG to go with this story, very useful info, but how to upload a jpg here?

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Is this day 60? I am losing touch. Who cares? This report comes from a hospital bed.. Finally, I should say, be it that this normally would be a strange statement!

last time I spoke of a flare, hoping it would go away. it didn't. Had 3 eye strokes in 4 days, each 10 minutes. Enough to send me right back to the panic I had in Jan and Feb. I now have a dozen panic attacks every day, tension all over, heavy sweats, headache, the works. basically. All the usual symptoms, bar a tender scalp. It's so bad that i spend most of the day trying to find a loophole, where I can function, without ever opening my eyes, to avoid to find out I am stroking. Staying home with too much time and no distraction does not work, nor does going out and raising my activity, and thus the chance of a stroke.

Went to see my regular rheumy, a jolly fat chap with few worries in his life, including the well being of his customers. I sat him down and told him the buck stops at his desk. He is it. No other doctors left to visit in the country, nobody that can help me in any way. I need him to pick up a book, or call a doctor abroad, get some info and get me on a regime, for my days of vision are numbered with a stroke every day. He told me he would not read a book, nor call anyone. He says it's not his job to treat GCA, as a rheumy. Take it or leave it. Begging repeatedly in despair did not help. He gave me a recipe and told me to go see the nurse for an IV drip, 500mg prednisone. (!!)

I only found out when the nurse was already preparing the drip, I asked her, ensuring she would not give me the full bucket of preds, but merely 50 to 100mg. She was unaware and was clearly told to give me the lot. Went back to see the doctor, who told me to take it or leave it. I asked him how he got to that 500mg number. He told me it was a wild guess. Asked whether he would not be afraid to kill anyone with wild-guess overdoses, he said that people dying this way was unavoidable.

I tried hard to stay polite, not to get up and bash his jolly fat face in with my chair, instead asked him again for a referral, anywhere, Taiwan or abroad. he gave me the name of another rheumy, colleague of a doctor in a hospital i was already visiting. a hospital where I had visited 3 doctors, all 3 of them brainless, with one of them personally responsible for at least 4 strokes of mine, including a 4 hour episode.

I took his name and left the one major hospital to go visit another, and find that illusive doctor i had not heard of before. Apparently important enough a guy that he does not do regular hours. I arrived at noon, when his shift was over. I explained my despair, the emergency and the nature of this case, and he said he would return to see me after lunch. he sent a nurse to lead me through the hospital for a full array of tests that had just been done the very same morning in the first hospital. I was done by 1500HRS and was told to take a seat in the mayhem-ER waiting room. The doctors in the ER notified him, and confirmed he was on his way to me. By 1800 most staff were going home, and i was still there. Nobody showed, except a male nurse with a very ashamed face, handing me a slip, stating i had an appointment with who knows who, some doctor somewhere, and the very man I came to visit had just buggered off home. No pleads, no bargains, gone till next week. I thought I was gonna lose it properly now. 6 hours of waiting for that guy, all those tests! For nothing! Kicking the elevator doors on my way to the top floor of that massive hospital, destined to find the director and launch a tirade and a complaint. I failed, and ended up talking to social services, where I ensured an official complaint was filed. It was now 1900, and i had just spend 12 hours in 2 hospitals being bullied and kicked from room to room without any results worth speaking of. With 2 babies and my wife, of course.-all day. By now, my wife had been in tears several times over the stretch of the day, and we were well at the end of it all. i decided to try and make the best of it, and go see that unknown replacement doctor, against all better judgement. Who knows, eh? Miracles may happen..

That new doctor was not pleased, finding out a colleague had simply played a dirty trick, dumping his own appointments in other peoples laps at closing time. He was only a little less angry then I was, but his reaction was not one of avoidance and denial. I think he decided to kick the system where it hurts, ordering MRI, MRA, Gallum test and every possible expensive test available, stating he was gonna get to the bottom of everything, before talking GCA and preds. He explained the loopholes in the system, how to get fast-tracked for all these tests. Getting admitted into the hospital through the ER, in his name. He told me to NOT up my preds to 60 that evening, unless i had a stroke. Come back tomorrow, the hospital will call you when a bed is available. There was no bed available, according to hospital intake staff the next day, but i went to see the doc again still. The doc picked up the phone a few times, and a bed magically appeared. That's the bed I am sitting on now.

In the meantime I have upped the dose by 5 mg to 30 preds, for that is what Roche Taiwan told me to do in case of ischemic issues.. Not a return to 60! The difference is noticable!

By 10.00 I had taken my 25 pred and still felt dizzy, cotton legs, muscle weakness and itches, dizzy, halo-vision and very disoriented with visual effects in my eyes that would dwarf the effect of LSD.

At 1200 I took another 5mg

By 15.00 all my symptoms had subsided to the point of almost feeling healthy. Can that be a coincidence?

Anyways, I have a bed, and a fanatical doctor now. He has not seen more then a few GCA cases in his career, but he seems to be a bit of a bull dog, be it he almost looks like a regular white office clerk with Aspergers, haha! It's gonna be a long, boring weekend now, but I feel safe and have not had panic attacks in 6 hours. To be continued..

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It's has taken a few days of doing nothing in an expensive hospital bed, but I finally had an MRI. On first sight there's a fracture in one of the ocular veins/arteries. I haven't gotten all the details yet, but it is supposed to be manageable with medicine. More details to follow soon, I hope, with more tests coming. They just injected me with isotopes, preparing me for a fancy friday test, and as I am typing this, nurses are in and out every 3 minutes with some iris-laming eye drops that burn like hell. Apparently it will open up the iris for investigations..

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They're still testing stuff and discussing test results, and new symptoms coming and going. Had another leg-laming episode, as well as my left arm. Been 2 days, at medium gravity. Have tinnitus now as well, and it's there all day. The panic attacks were so often and severe that counting symptoms, or sourcing them had become virtually impossible. They had to put me on xanax 0.5 pd, but have now upped it to 2mg per day Spent several days so terribly dizzy that walking, car driving seems to be soon-impossible to do anymore, probably because of that burst vessel in my head. I am terrified that this is a life sentence somehow. Luckily, today it subsided a little. My eye sight has improved quite a bit as well. less halo, better short vision, no more long-distance double vision. No more strokes. Where i was basically only taking preds as pharma, by now I am told to take Aspirine, clopidogrel, mecobalamin, simethicone, xanax and pentoxifilline, as well as 30 preds and Actemra. More tests on Monday, re-checking my temporal arteries with ultrasound, after which I am promised a final diagnoses and treatment plan. Doc suspects that my sudden paralyses has something to do with cholesterol-clogged arteries in my leg and/or knee caps, and hence the new penta-pills. I am syurprised nobody has told me to styart statins yet, but the doc is adamant that a guy in my position can not be facing 183 LDL without serious likeliness of negative side effects. I just hope that mynewly-found booz, tobacco and fat-free/low carb diet has any effect on my LDL. In the meantime the Xanax is a Gods gift, allowing me to take a little distance from all this darkness, trying to get some form of grip on my life.

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All the best.

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There's much to write, but I won't for now. I am trying to focus as little as possible on all of this sickness, for now. But, in the meantime I have a throat infection, a deep rumble/cough that seems stuck and is very annoying. Been there 2 weeks. I won;t see the doctor till Wednesday, and I have no fever or anything. Can I take antihistamine or something else to loosen the cough, get some relief in my breathing fro all the stuck mucus in my air pipe. Is that safe with steroid use?

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Not sure an antihistamine will clear the gunk from a throat infection although it is safe enough to take with pred. But since you are on pred and Actemra your immune system will be pretty compromised and if you have a throat infection - you need your doctor's input to be sure it doesn't get worse.

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Still alive, stable,. 35 preds, MTX once a week, GCA at 0, but the ocular vein damage plaguing me in 20 different ways all day. Living on Xanax now, after hitting rock bottom mental instability due to incessant panic attacks about more strokes. Now waiting for that miracle where things heal. It got way better after 2 weeks on the right meds, but that's not the healing I am referring to. It is now at a livable level, but dizziness, disorientation, blur-spells, extreme photo sensitivity are all big issues if you are a daily driver, and an active person. I can just about manage, but still need to stay in at times for lack of ample driving skills. It does not seem to have changed much the last 3 weeks. Had mad stomach issues as well, to the desperate point of asking for daily injections instead. Been trying different ways to administer the many pills in different combo's and time frames, and that seems t work quite well. Weight is stable, and even a little down from 2017. LDL has been going up steadily, hitting 194, despite everything. Doctor's not sure it's hypercholest.., but has no other explanation yet. I am on statins now, no results yet, been only 4 weeks. Taking plavix, xanax, penta, calcium in the morning with breakfast, preds and asperine after an early afternoon dinner. Statins calcium and xanax at night.

The damage to my nerve happened in the weekend I had 3 strokes in 4 days, and been knocking the former doctor's door for emergency treatment. He was absolutely unwilling, even though he was the doctor in charge of the department. Wanted to send me somewhere else, where there's also no doctors with experience. I insisted he help me, once more declaring the emergency, the clock ticking in my head, veins may pop or are bleeding already.. He said he did not know what to do, and thus refused. I told him to call a doctor in another city, or abroad. He refused. I asked him to check the internet or the digital library. He refused. He said he would not do any such things, but he gave me a bottle of liquid steroids (I spoke to him about that option), and told the nurse to inject the lot. Found out it was a 500mg bottle!! Confronted, the doctor said he liked that number. Said it was a wild guess, since he had no idea how much to dispense. Told me that sometimes people die this way, with wild guesses, but that's the risk he was willing to take. I kid you not. He said those things, while I was trying not to stroke out there and then. Started to lose it, and went down to the lobby to find the director of the hospital and file a complaint. Offices closed. Lost it some more, drove to the other side of town to find another doctor. Told him it was extremely urgent. Emergency. Wife crying on the phone, doing the translations where I failed. Doctor t old me at noon he'd be back in the afternoon to see me, and had me run every possible cheap test to keep me busy. By 1500, I was done, and no doctor had arrived. by 1800, a shy male nurse walked up to me and passed me a note, stating the doctor had changed his mind and had gone home. I went properly crazy angry... kicking elevator doors, storming to yet another lobby for yet another complaint. Useless. Decided to keep my calm and find another doctor in that hospital. The slightest of chance of help is better then none. Knocked a new door and found the rheumy I have now. Gonna sue the first hospital. I already announced it to the director,, who is waiting for a meeting with me, apologies and whatnot. I want 2 years of weekly actemra for free. That, or I take it to the press and to the courts, and with a copy of my medical file in hand, they got little defense. The prescriptions alone are worthy of staff dismissal, and there's no denying them. Had to delay the meeting till now. Too worried about getting angry in the face of that number-guessing doctor who doesn't mind killing a patient here or there. To be continued..

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Quite a story - it must have been awful! However - as a bit of consolation, an infusion of up to 1000mg/day pred for 3 days is sometimes used as pulse therapy for GCA with visual symptoms ncbi.nlm.nih.gov/pmc/articl...

All the best

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That's one of the studies and treatment theories, indeed, and had he known about those, discussed them, that would have been a different matter. He just wild-guessed and apparently got lucky it was within existing theoretic quantities. The hospital is expecting me to sue for cash. They are famously fat with cash and it's all donations from "religious" corporations. Nobody likes negative press. I won't do that, showing them it's not about the money. The idea of the doctor at hand getting booted out is not on the table for them, -they said, but they are willing to talk cash. I am just gonna talk medicine. They have the means to help me improve my health, after they neglected and damaged my health on several occasions over 6 months, with too many moments to chose from. They can write off my Actemra as a tax thing, experiments or what not. For me, if it reduces relapses, I need it. Another flare me be the last thing I see.

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With great thanks for the extremely critical advise I got here... a little update. Evening 1. Took 40MG pred, had full night sweats, but woke up without nausea and clear eye sight..-relief! Afternoon 2, 40MG, evening 2, took 30mg and experienced a seemingly acute throat infection with all the mucus and deep coughing that comes with it. Strong reduction in night sweats during night 2 and clear vision in morning 3. Still no nausea, having my coffee as usual.

What a scary thought that, in hind sight, I spent the last 5 weeks taking so little pred, I might as well have taken none, relying completely on my immune system and the Actemra. This present flare would never have subsided without seriously upping the dosage..

I will do another 60Mg today, and watch things closely. Again.. thanks so much!

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I've been interested in the CBD as well. However I haven't found anywhere credible research that it is effective for the inflammation of PMR/GCA. I think there have been studies showing it helps with rheumatoid arthritis. It also seems, if it's going to work at all for whatever ails you, it has to be taken for at least thirty days before any improvement in the condition is noted. In the case of GCA, where eyesight is at risk, and there is also a risk of other vascular problems such as stroke, relying on a slowly building up medication like CBD would be dangerous. On the other hand, I suspect that once the inflammation has been wiped out and you are searching for the lowest dose of pred which will continue to manage the symptoms there's a good chance that CBD could help some people maintain a low dose. I personally have found both ginger tea and pure aloe vera juice appear to be helpful, but not everyone does.

Listening to your story it seems to me that you've had to deal with the double whammy of both reducing opiate medication and a high dose of pred to manage GCA symptoms. No wonder you've felt wretched! And, as Actemra comes with its own nice little suite of side effects, even if it was helping the PMR/GCA it could well be contributing to your feeling unwell rather than better as you'd probably expected.

I hope you get through this rocky phase quickly. It does get better!

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I won't be taking CBD in small doses, that I have decided already, nor will I be relying on them at any given point. Ordered the 25% concentrate tincture and I will be taking 10ml of that per month. With no known medical side effects in high doses, and having ample experience with possible THC residue in the mix, I feel I know what I am doing there. I won't be relying on the Actemra neither, but considering I basically have been steroid-less in the second month of my GCA diagnoses, it is likely the Actemra has something or much to do with the fact I am still in one piece.

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Thanks, and yes. I would have been so better off had I had a doctor to guide me, would have avoided all kinds of silly drama, from opiates to depression to clear and present danger.

I have lived in some 45 countries, often wonky ones, so I am quite well versed in self-medication, to a point where I often serve as a replacement doctor for the locals, or a second opinion-guy. GCA is, nor was ever part of such. Way over my head, way too rare and with too many risks to even touch with a ten foot pole being the layman I am. I still don't have a doctor, nor is there any hope I'll find one in Taiwan that has any clue. For now, that is by far the scariest part of this ailment. Once I found my footing with sufficient data and confidence, I should be fine. Not knowing when or if to go blind, or to stroke out has been proper torture, but I am doing better every week, I think. Not so afraid anymore.

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Reading back my own writing about mt Chinese doctor, 4-5 years ago, and remembering other inexplicable illnesses over that same time, it suddenly dawned on me: I have had onset GCA for a long time, probably starting around my 45th!

Like I wrote, some 5 years ago I ended up 50% incapacitated for about a month. Big sweats that only show at night with little or no fever to measure, surely not in daytime at the doctor's. Fatigue like never before. Headaches, but bearable. 90-60 blood pressure, ready to faint at any given time, unable to drive ar walk properly. Sudden weight loss, no appetite. Visiting 6 doctors in 3 hospitals for test after test, all coming up empty-handed. Blood work was fine, with only slightly raised inflammation markers in the blood. No source, no clue, no diagnoses. Had a B12 drip to make sure, but found there was none lacking. Ended up at the Chinese doctor who said: You may have slumbering SARS, to weak to get you properly sick, to strong to ignore. He wasn't sure, I guess but gave me a herb mix that literally cleared all symptoms over night. As a disbeliever, I suddenly saw the light. Magic herbs! Now, it was surely impressive, after the hospital rollercoaster lasting 4 weeks, but maybe it simply was the day my health came back. We'll never know for sure.

Then, 2 years ago I woke up and found I could not focus my left eye. Pretty scary, for a first time and I went to see a few doctors about it in the week or 2 that I suffered from it. One said it was just a passing vasculitis of the eye, and put me on anti-biotics. When that didn't help I went to see more doctors, but with no further news. Eventually it passed, leading me to forget the whole thing. Now I know it's the same symptom I have had during my Jan flare, as are the symptoms of my month-in-mayhem, back when. I have had periods with nigh sweats in between as well, always presumed it was either some stomach bug, or a cold, or the booz.

I can't shoot the Asian doctors for not finding GCA 5 years ago. At 45, even western doctors seem reluctant to diagnose this. They could have checked a bit better, though.

Scary thought I have been living with the threat of losing my eyesight for that long.

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I find the concept of a "passing vasculitis" rather strange...

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