Hi everyone, still a relative newbie & I'm sure many of you have been through all this so many times now, it is reassuring & heartening for me to read the posts knowing I'm not out there on my own. Diagnosed PMR Feb. this year. Totally underestimated my condition & medication needs 'cos I knew best..wrong!!
Started with severe headaches 3 weeks ago, was able to get 'phone consult with GP & managed to get started on 40mg. pred within a few days (had been on 2.5mg for a couple of months previously.) Headaches took a while to calm down but have dissipated to a background feeling of pressure in my forehead in the mornings, til about lunchtime. Took 40mg pred for 10 days then 35mg for 10 days, thinking of reducing to 30mg.from tomorrow for 10 days. Is it normal for this feeling in my head to last this long? This is the first time in my life I've suffered from any sort of headache..so not really sure what to expect. Jaw pain gone, eyes settled down somewhat, I am SO lucky to have been virtually pain free apart from the initial onset, & my current biggest hurdle is the constant debilitating exhaustion. Interested in other people's experience of this. GP refuses scan & my rheumy has Covid, so 'phone consultation with her next week instead of long awaited appt.I
One more question if I may. I have diverticulitis (diagnosed 2 years ago but probably had since teenager..now 71yrs.) Last week had my worst ever flair..did not take any medication 'cos I wasn't sure about reactions with steroids..ABSOLUTELY do not want to go through that again..As a kid we took Indian Brandy (rhubard tincture..no alcohol) always worked for me but it is no longer made. Now take Buscopan (cramps or IBS whichever I can get hold of) which sort of does the trick, but not as effective or fast acting as good old Indian Brandy. Would like to know how others cope with diverticulitis and PMR.
Thanks in advance for taking the time to read all this.
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Poll8
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According to a UK drug interaction checker there is no reason why you shouldn't take buscopan with pred. You can't use US checkers because buscopan is banned in the USA.
There are diverticulitis sufferers here. Try searching in the box and choose posts from this community to find a recent one. Re your headaches. Pred always made me feel ‘heady’ with a pulsing heart beat in my ears that reduced with dose. However, I’m a bit concerned about the break neck speed that you are reducing. 40mg is the minimum starting dose for GCA . I was on it for a blanket 6 weeks before any sort of reduction was considered. Is this what you’ve been told to do?
You say your eye symptoms have “settled somewhat”. They should be gone really before any reduction at all, though Pred can make focusing difficult at high doses.
The exhaustion will be both from Pred and the severe systemic illness that is GCA, autoimmune activity attacking your blood vessels potentially from the chest up.
My GP suggested 40 to 30 to 20, reducing weekly because he said that I would become dependent on pred. if I reduced slower. My rheumy said that because the blood tests weren't conclusive for GCA reduce by 5mg. a week unless I had more or more severe symptoms. I decided after reading a number of posts on here that both of those were too fast, especially after making the tapering mistakes I made on initial diagnosis, which is why I decided to taper 5mg in 10 day bursts. Do you think I should stay on 35mg. for a bit longer? Have been on that dose 10 days. I will be pressing for Ultrasound when I speak to Rheumy later this week
"I would become dependent on pred. if I reduced slower"
The main reason one might appear to be "dependent" on pred is because the disease is still active and you need a given amount of pred to manage the inflammation!! Blood tests aren't conclusive for GCA - up to 1 in 5 of GCA patients don't have raised blood markers. In the absence of a positive temporal artery biopsy or u/s, they have to go on symptoms but it does sound as if the rheumy is a bit sceptical - but his reduction is a bit more sensible when he doesn't know one way or the other.
My GP doesn't know this, but I think that I was afraid of becoming dependent on steroids when I was first diagnosed, which is why I was so averse to tapering slowly. I never received any advice about the effects of the medication and it was really only when I started reading this forum that I realised how important the steroids were and the theory behind tapering.
Hello Poll8, I have GCA (just over a year now) and on second attempt to get down from 60mg, am now on 10mg, thence one month, 1 mg at a time, and so on - just to say I've noticed since reducing from about 15, that my "pressure head" ( good description ) is much more noticeable, as is blurred vision. It wasn't as marked as this a few weeks ago. Which I presume is the condition making itself felt, as less masked.
I learned my lesson last time round pushing myself to get off steroids.. won't make that mistake again! I'm with you and the almost constantly repeated chant on this forum, "slow and steady" 👍
Dependent on steroids.... Well I have a really good understanding of the importance of sensible (and inevitably slow) taper. Years ago I had a skin condition. It turned out it was only dry skin but before I figured that out for myself the doctor had prescribed a hydrocortisone ointment. I learned pretty quickly that as soon as I stopped using it the condition would flare up worse than ever, and the area was expanding. I started wearing cotton gloves at work! Then something twigged and I went in search of other products I could use instead of the ointment, Found a couple of things that worked (most drugstore otc creams and lotions did not) and gradually weaned myself off the hydrocortisone. I did buy otc version of same, half the strength, and used that when a flare occurred, which they did for a while, but decreasing in intensity and frequency, and eventually I didn't need the medicated cream at all.
So when I started pred I was all about "What can I substitute for pred" as I taper off. Well of course there isn't anything except lifestyle changes you are encouraged to make anyway so the pred can do its job more effectively with fewer side effects. With pred for PMR/GCA you need what you need and no amount of willpower and determination, no supplements or alternative therapies, can make an iota of difference to that. They can help with the "add-ons" but not the PMR itself. However because of my experience with hydrocortisone I did understand immediately what my doctor meant when she talked about weaning off prednisone and the absolute necessity to go very slowly. I am so very lucky I didn't have a physician who was worried about my developing dependence!
Good read..A dermatologist locum gave me steroid cream for a rash I had on my chest which I thought might have been connected to taking pred. I was not keen on steroids on top of steroids but tried it out...rash got lots worse. Use Double base now which has more or less cleared it up. She gave me large 3 tubes steroid cream,, I've used a bit of one. I took the other 2 back to the chemist today. I was quite surprised they accepted them back but they are desperately struggling to get stock. What a waste of resources.
I discovered a cream called Impruv, and also food grade hemp oil, were what I needed. Was without a supply of Inpruv for a while when the company was bought out by a multinational and product discontinued . Later I found out it is now being made under a different name, in India now, not Germany, and sold at a higher price (it was already so expensive they kept it behind the counter at the drugstore) by Avon. So I am very glad to have it again, but annoyed at the price and added inconvenience of getting it. I'm finding the longer I live the more likely it becomes that my favourite items disappear from the market. Sigh. Wouldn't be so bad if new items were actually improvements but in recent years it's too often been the opposite.
I don't know what the equivalent of DoubleBase is here (Canada) but I tried literally everything. I saw a naturopath around that time and although she didn't actually help me, she was interested when I found the Impruv and suggested it was the shea butter in it which was the helpful ingredient. I don't know. I expect it was the particular combination. It is now available as something called Physiogel, but one has to be careful. Avon also sells a lotion and a face product as well as the "intensive cream", and the formula is different!
When asked by doctor what I'd tried and I said everything, including vaseline (!), he prescribed the hydrocortisone ointment. What turned things around for me was the hemp oil. I was given a bottle of it by someone who had recently opened an aromatherapy business. They were trying out all sorts of oils to find the best base for certain mixtures they were working on and had decided against hemp oil (I think it had too distinct a - grassy - scent of its own), so they gave me the unused bottle and lo and behold it was what I needed. Around the same time Impruv came into my life, and much less messy than oil. I've been lucky in my life with serendipitous moments like this: hemp oil for my skin, salt for my morning headaches (and unexpectedly several other problems), learning about how bad nsaids are for osteoarthritis....
Very interesting reading, thanks. Will have a think about maybe staying on my current dose of 35mg. possibly until the headaches stop. Will have a word with rheumy
Omg Snazzy, I read this and for PMR it suggests 15mg pred for 6 weeks, 12.5 for 6 weeks, then staying on 10mg for a year before reducing by 1 mg a month!! Totally different from what my hospital dept suggests - in fact they’d have me on methotrexate in a flash if they could, if I did that 😳 I really wish the various medics would get their act together….
However it does reassure me that if I felt the need to stay on 10mg, it wouldn’t be totally out of order!!!
That said, my plan is to get to 10 and then reduce by 0.5 a month….
You did. The group found that it reduced the rate of flares/relapses from 3 in 5 to 1 in 5 - reflecting that flares are almost always due to too enthusiastic reduction. They assume flares are inevitable and then jump in with MTX straight away, If MTX doesn't work I assume they blame the patient ...
So now I’m wondering whether to stay on 10mg through the Christmas period (ie hopefully for about two months if all goes to plan) before reducing in 0.5mg stages. That would be twice as slow as my rheumatologist suggests, but not as slow as the authors of that study found to be beneficial….I see that the paper was published in 2012 so I wonder whether they have revised it…..
No - the author Vanessa Quick is a consultant at Luton hospital and still uses the approach. When asked why - she said "because it works".Your problem will be getting the pred prescribed if the rheumy says no and your GP won't diverge from their opinion.
Snazzy has hit the nail on the head too - it is easier to insist the patient does as the rheumy says, they inevitably have a flare and they add in a "steroid sparer" that works in other illnesses and feel they have done their job. When it goes wrong it is bound to be the patient's fault - not anything they did, they are the experts. In my experience it tends to be younger, relatively newly qualified doctors who haven't yet learned the textbook isn't always right...
Thanks - found her online. I guess it wouldn’t go down well to quote one rheumatologist to another - as a mere patient! - but knowing she’s pukka will give me some confidence if I need to argue my case 😊You’re right I’m sure - the problem in future may actually be getting the prescription I feel I need - but I’ll face that if and when it arises.
There are a few different approaches but the specialists who are more up to date or take a special interest advocate a slower approach. GCA tends to be, go high, reduce more quickly than with PMR then Slow down once you get to PMR doses. However, there is no point if symptoms are still there or easily triggered. Some people need 60, 80 or 100mg. Some docs seem to like to race down the ladder, see the patient flare and then put them on a steroid sparer. They have their place but are not without their issues. I nearly had that fate but put my foot down because having drugs that lower my white cell count seemed stupid (another condition) but they were more scared of Pred than seeing me catastrophically neutropaenic. I was doing just fine on my plan and never flared. The bottom line is, these are all guidelines and the patient should have a tailored plan according to their response. This old post might be of interesting healthunlocked.com/pmrgcauk...
My bloods were in the normal range even when my sight was shutting down in A&E, which is not as rare as one would think. For that reason I was treated on high dose Pred based on symptoms but particularly because my symptoms were ‘cured’ by the correct dose of Pred. There isn’t a specific test for GCA; they look for very raised inflammatory markers. What more symptoms did they want? It seems non-sensical that they would rather not treat a condition with risks with the best medication in case you become dependent on it. I have come across docs who think that we’ll love the buzz so much we won’t want to stop. Well, I’m still waiting for that feel good factor. Yes, at the end there can be problems with regaining adrenal function speedily but that is a small price to pay for no blindness, stroke or aneurysms and above all a reasonable quality of life.
Perhaps the Rheumy is hoping to challenge the diagnosis by seeing if your symptoms return if the dose goes too low. However, I’d rather not they play out an academic conundrum at the potential expense of my sight, especially if the Pred helped. Apart from your bloods being abnormal what more did they want?
My blood showed inflammatory markers, but not high enough apparently for the GP to be concerned. Rheumatologist hasn't seen blood results yet. My sodium and potassium levels were low too which amazes me as I follow quite a good veggie, iron, protein diet. Does that have any bearing or it that usual for PMR? GP doesn't want to pay for Ultrasound I guess, he thinks consultant should..he is VERY reluctant to prescribe steroids, he thinks it should all be consultants responsibility. Is it true that if I have been on the high dose steroids for some time, hence the inflammation possibly gone down a bit, it is too late for an ultrasound because the evidence of. GCA has been disguised?
Well the longer you are on Pred the more likely the ultrasound or a biopsy could give a false negative. My biopsy was negative (on 60/40mg for 8 days) but I was still treated on the strength of the symptoms and response to Pred. Pred tends to lower potassium but increase sodium.
GP’s normally pass GCA on to Rheumy’s but PMR they often deal with themselves unless it’s complex or not going to plan. However, I do wish that in these difficult times there would be more collaborative working with the use of the phone so that they can treat a patient instead of casting them adrift while they wait for non-existent appointments. The trouble is that the system is geared up for competition rather than cooperation. Can you get a second opinion from another GP? Someone needs to take control of your case and decide on a plan about what is going to happen.
Otherwise if your symptoms start up go to A&E because if this is GCA your sight could be at risk. GCA is normally seen as a medical emergency. When my GP called ahead I was picked out of the queue to whisked in. They popped in 60mg of Pred within half an hour. Keep a record of your symptoms.
Been trying to change my GP for 2yrs. Anyone reccommended is outside my area..Still looking.Hadn't thought of keeping written record..good idea, will do that. A&E did not treat as emergency when I went with the headaches 3_weeks ago and I said I felt I needed GCA check..but then they weren't treating suspected strokes or heart attack as emergencies either in the 5 hours I was there.
Will keep careful eye on my symptoms and having read the article you directed me to and a few other posts, think I'll stay on 35mg for the time being, get more advice from rheumy and wait til head pressure gets a bit less before making decision about tapering. Definitely going to take enough time this time round.
Thanks for sound practical reassurance..much needed and appreciated 😊
It's always the same scenario isn't it. Cocky, self assured specialists who act as if you don't count save as something to play with to see how their ideas turn out. The disconnect between them and their reticence to communicate meaningfully with each other let alone the patient is mind boggling. This forum is a godsend. My rheumy wants me to have a biopsy to prove GCA because he wants to put me on expensive TCZ and they wont permit it without a positive diagnosis, but since I've been on 40mg pred for 3 months he admits that a false positive is most likely and inconclusive. He then complained that I should have been seen by him within 6 days of diagnosis. Can you credit it. Whose responsibility was it to refer? when should they do it? why don't they agree a planned approach? If I had run my company this way I wouldn't have had many customers, wouldn't have invoiced some of them and would only have half the materials necessary to make the product if only I had talked to the customer about what they wanted me to make instead of making what I thought they ought to have, . After all I am the expert and know what is best for my customer regardless of how it looks, whether it fits the room or costs what they expect to pay . They really have no notion of joined up anything and live in their own little specialised elevated fiefdoms. Primadonnas .
I was in-between a wry smile and tears reading this..it is so true 🥺 My GP loves to remind me he did his initial training under a Rheumatologist 40 years ago..not sure he's aware things have moved on a tad since then 🙄
tears of laughter or sadness Poll18? I am at this moment constructing a missive to my rheumatologist in a bid for synergy between his knowledge and my understanding of my bodies reactions. I will attempt to make him aware that this is the only way forward that will work.
Even if your GP had known enough - and it is up to the local consultants to sort out a rapid access pathway and train the GPs - to refer you, the chances of being seen with in a week UNLESS they have a proper fast-track set-up is non-existent as they won't even LOOK at the referral and if it is atypical, they will reject it.
Gca, its main symtom are in between severe headache, pressure on eye , feeling of blockage ear ,and stiffness pain in teeth or jaw . , first it is diffcult to diagnose,due to lack of more research in this field ,after that we all sufferers have one pattern of medicine start prednisone with 60mg go on tapering as per standard chart for long time ,continue suffering from side effect of steriod , rest leave on God , i donot want to blame medical field , but this pattern of standard treatment, donot suit everyone ,acterma also have its limitation . No other alternate route for cure .That show no more research have done in this field .We have to walk on same track of treatment ,with lot of side effect .
Hope in future more research will done in this field .
All of which is why this forum is a Godsend. Being able to relate and understand how other people are dealing with similar circumstances. Helps with the questions I need to ask to make sure I am helping myself to get the right treatment for ME.
I hope that this forum has been of some assistance and reassurance to you in assisting your wife Rajuguide. That others join in the discussion may seem distracting but it is a dynamic format and the experiences of others add to rather than subtract from the narrative. Your faith and belief are strong aids in recovery, but they need the correct medical assistance to work their miracle. I hope you have good access to this and that the specialists will adjust the treatment appropriately to meet your wife's particular needs. Each of us is an individual with differing responses to medication and symptoms. One solution cannot suit all. Please let us know how you progress.
Thanks for your advice, my wife is from last 3 months on acterma weekly and on prednisone which was taper from 60 to 12, but due to flair again dose rised to 15 mg . Really i shocked , her ,headache, pressure on eye , ear continue in spite of latestest medicine . Only 25% improvements.Now see will go for pet scan tomorrow.
as others have said that seems a very steep drop and maybe with GCA too much too fast. I have noticed with my GCA that despite reducing the inflammation in the blood , now below 4 I am sensitive to the slightest change inmedication i.e.prednisolone and some slight headdache,jaw,temple pains reappear quickly if the dose is just slightly lower. This indicates for ME that where I am at present is JUST coping. PMR is easier in that the dose can be quite low, but GCA needs much more. Please be careful as once the sight goes I understand it cannot be recovered. I don't want that for me and I know you are equally concerned. good luck
Hi all again, just an update since my post about "pressure head" Had 'phone consultation with Rheumatologist few days ago. She was annoyed that I had done 10 day stints with the 40/30mg. pred. and more annoyed that I hadn't felt the need to discuss it with her, which in a way is a good thing as it means that she actively WANTS me to get in touch with concerns so, I shall feel more able to do that in the future.Because GCA not confirmed she had asked for more blood tests, but no ultrasound.
She has concerns about how the steroids will affect my stomach if I don't reduce in what she calls "a timely fashion" so has suggested 30/25/20mg each for 2 weeks, then begin to taper slower at 20mg. I'll give that a go and have been taking 30mg. for the last 3 days. Noticed the pressure in my head takes longer to go off, but usually gone early afternoon instead lunch time and comes back slightly in evening.
We got the unexpected bonus of a holiday in Cornwall from my niece this week who was unable to go because of work. We are staying in a beautiful pod in the woods with lots of great walks. Struggling with energy levels, but managing a couple of walks a day and feel the fresh air is doing me good..better than sitting at home fretting!
Thanks to everyone here for their wise words last week and giving me so much info. that made me ask questions I wouldn't have thought of on my own.
Keep an eye on the "pressure head" (no pun intended). If you are able it might be good to have an expert eye doctor check your eyes for any sign of GCA. I don't know what such a specialist would be called there, here it would be an ophthamologist.
Hi, I had an eye exam about 10 days ago. Said they could not detect GCA but I had been taking high dose steroids for over 2 weeks, so it was possible that it was disguised. He thought my left eye had deteriorated since my last check about 2 months ago and reccommended distance glasses for the first time.Rheumatologist didn't appear worried by this but said steroids play havoc with your eyes anyway.
Optician said just wearing corrective specs. may help with the feeling of pressure but couldn't shed any light on other reasons I may have had the headaches initially.
Picking up new specs next week, will see if they help
Glad to hear there is no sign of GCA and you seem to be well looked after.
It is true that pred can make the vision blurrier. I'm so near sighted I didn't notice much difference, except for some reason my night vision wasn't so good when I started pred. I also developed elevated ocular pressure, but that haas normalized completely since my pred dose got lower. Had it gone much higher I would have needed treatmetn. As it was the eye doctor saw me every few months for a year and I still go annually instead of every two years, and will as long as taking any pred at all.
So true that you need to be ultra aware of all changes with this condition, but eye changes seem to be a big scary worry. Good that you're getting regular checks. Wearing specs is going to be new to me. Been wearing sunglasses a lot recently just for added protection and I find them very heavy. Have bought the lightest pair I could find, not very fashionable but really only interested in practicality. As the optician said, if I want to protect my sight I will just have to persevere and wear corrective lenses..here goes
I've been wearing glasses since I was 9, and needed them a couple of years before - one of those kids who can't read the blackboard so the teacher tells the parents, who have till then been oblivious!
I also find glasses very heavy, so now have both regular glasses and sunglasses (prescription lenses) in the lightest weight material possible, and the regular glasses aren't even in a frame but have the side pieces and nose piece somehow screwed into the lens. I was wary of these before, but they are featherweight and seem durable enought for my purposes. My sunglasses have frames, but the lightest I can find. I have to say these glasses cost a small fortune and only a tiny portion of the price is covered by our insurance, but there isn't anything more important really than being able to see the world!
It's possible to get frames which come with a sort of magnetic sunglasses unit to attach easily to the main glasses. My son used to have these and they were really nice. I don't know the weight. Certainly the weight of my glasses was never something I even thought of until I hit midlife, and in the olden days, when I was a child, glasses were still made of glass.
One thing which irritates me is people with perfect vision now wear glasses as a fashion accessory, and I believe this has made it more difficult to find attractive frames that are actually designed to accommodate corrective lenses. This was more of a problem a few years ago; the frames manufacturers must have got a lot of negative feedback from people like me! I needed new glasses recently and it was the first time in years that we found several appropriate styles I could choose from. On the other hand if glasses had been fashionable when I was a teen I wouldn't have felt the need to go out on dates without my glasses, and therefore unable to see details in the world around me, which did lead occasionally to confusion or embarrassment.
So, embrace your new glasses! I hope they give you a whole new and positive view of life! 😎
Sorta looking forward to specs, new me, new outlook. He suggested I wear them for driving and watching TV, so as long as they're comfy, they don't have to look too great..in the scheme of things, it's not a big deal 🤓
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