Oh Crumbs, I seem to have written my whole introduction as part of my profile. So my main concern at the moment is how do other people cope with the side effects of high dose (50mg) Prednisolone. Is it common to feels so unwell and to shake so much that I can't write and keep mis-hitting keys on my mobile and trip over nothing and go giddy if I move my head too fast? And no sleep is a huge issue - lack of sleep in itself, even if nothing else were wrong, would make me feel ill. Any hints and tips gratefully received. But right now I'm off to bed to not sleep, perchance therefore not to dream either!
Newly Diagnosed and Frightened: Oh Crumbs, I seem... - PMRGCAuk
Newly Diagnosed and Frightened
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Hello there, I'm so sorry that you are having such an awful time of it. Personally I am no expert as also newly diagnosed. There are some really knowledgeable people on here who will be along to help in the morning. If it's any help early days can be very scary but having read numerous posts of a similar nature I am sure that this will settle down. Agree about the sleep thing on pred, I usually sleep peacefully for 9 hours but now 6 and reducing. As we taper down I'm hoping this will improve. I am also rather'high' and bouncy with some shakes. I think we will adjust. Take care of yourself, this is a good place to get support and help.
Hi Fatsiajaponica, thanks for replying to me. Trouble is I've been having sleeping issues for years, tried everything under the sun, but still ended up with 4 to 5 hours a night. Now I'm down to about 3 in two one and a half hour "sleeps". Still, at least it's light, and I can watch dawn break . Are you a gardener, it's one of my passions. Just moved house, have something resembling the Somme outside my window at the mo. Looking forward to headache lessening so I can spend happy hours planning what I'm going to do! It's just trying to get my mind off this whole illness at the mo is difficult. All the best.
I would get up when I couldn’t sleep - have hot chocolate and read til sleepy - also Tropics Sleep spray good on pillow - was on 40 mg - good luck
Hi Daffodilia, hot chocolate ....mmmmmm! Of the many things I've tried over the years re sleep, I've never cpome across Tropics Sleep Spray - I'll give it a go. Reading's difficult at the mo because of headaches. As is using computer, so I'm doing it in short bursts.
I also have sight problems as well as PMR - I use large print on Kindle - might help?
Can't cope with Kindle screens, but some books have nice dark large ish print, so I try to get hold of those. The little fat, many page paperbacks are a no-no! I'm hoping a visit to the optician tomorrow to get glasses corrected for my new eye status after my second cateract op might help somewhat.
Maybe go for audio books.
If you are member of your local library you can get an app -and download for free.. Same as library -3weeks a time, but can be renewed twice . And you can have 10 loans out at any one time…
Worldwide library…
Just look at your local council website for info…
Oooh! Hadn't thought of that. Thanks.
Been using it since diagnosis. As you say paperbacks are a nightmare -and large print books too heavy and cumbersome…
Amazon has an audio subscription if you want to keep books -but obviously you have to pay per month..
Good Luck - library do large print but I don't like the mass of type - they recommended for autism/dyslexia but not sure how you find them
PMRproAmbassador
Hi and welcome! Don't worry about having put lots in your profile - far better than not enough and it helps us help you. We can always find it there.
Yes - I'm afraid that those are very common effects of high dose pred and it is hard. You have also to add to that the fact that GCA is a serious systemic illness, not just a bit of a cold, and it makes you feel ill itself. Pred on top is just the icing on the cake. You will get more used to it with time and as the inflammation in your body comes under control, thanks to the pred, you will start to feel less awful. You have to hold on to the fact that the pred is protecting your sight and is a blessing in disguise.
DorsetLady will be along soon - she has had GCA and high dose pred and will give you an introduction post - far better than anything I can say as I am in a bit of a rush just now.
Now you have posted you will see a load of Related Posts from other newly diagnosed people in the past. All that is in them is relevant to you too so do have a read in the meantime.
Hi PMRpro, Thanks for the reply and thanks also for pointing out that this is quite a serious systemic illness that in itself makes one feel in. Sounds silly but that hadn't occured to me! Also, thank God for steroids - when the 111 doc said that without them blindness was a very real posibility I just freaked out. I'll do some browsing on my next visit.
DorsetLadyPMRGCAuk volunteer
Hi and welcome,
Yes it can be very frightening at the beginning-not only having to come to terms with the illness itself and then on top of that, the side effects of the drugs… not nice, but necessary.
As PMRpro has said, have a look at this link -
healthunlocked.com/pmrgcauk...
The weird feelings from Pred will get better as your body gets used to the high doses, which as we know can seem as bad as the illness itself, and will reduce as you taper. You have to say to yourself, these are only temporary, I can and will get through them.
The sleep may not return as easily, but at least at this time of the year you do have lovely sunny mornings, I well remember early cups of tea in the garden listening to bird song… so not all bad.
This might give you some ideas of how to deal with that- there are plenty of suggestions from others in the replies.
healthunlocked.com/pmrgcauk...
When you do feel up to please have a read through the FAQs, but don’t try and take in too much, too soon. Even though you may not be confident on the site, you won’t break it…. Just have a wander through things. You can find the FAQs by tapping the link under your post.
Just remember, now you’ve found us, there always someone around, we are a world wide community - and you’ll always get an answer, no matter what you ask… someone will have been through it..
Having read your profile , if you are still getting some headaches and having chewing issues after being on 50mg for 10 days , you should make your doctor aware, you may need a little more Pred. Please do contact them, and let us know how you go on.
Hello DorsetLady, Thanks so much for that very comprehensive reply. The link was very helpful. Today the headache is a little less, and I'm seeing the Doc on 6th July, so I can discuss it all with her then. Trouble is, I'm prone to headaches anyway and I have TMJ (Temperomandibular Joint ie jaw) disfunction as well, so I's difficult to see where my "normal" problems stop and this illness begins. I'll certainly browse the FAQ's.
Those 2 issues don't help for sure... but just make sure they are "normal" pains and not GCA related.. although I do appreciate it's sometimes difficult to be 100% certain.
I've read your profile and just want to say that things will get better for you - they have already, with your inflammation markers coming down.
Your dose of prednisolone will be tapered gradually and that should help with sleep and other effects. This is a condition which could (should) eventually go into remission, unlike some other things.
Do ask your doctors about gastro-coated prednisolone, in view of your stomach problems. It may or may not be appropriate for you, but no harm in asking.
You have been blessed with a good GP and finding this Forum. Welcome!
Hi Rugger, Thanks for the reply. I'm already on the gastro-coated prednisolone, and I take it in the morning just after a big bowl of porridge, but there's still some discomfort starting. So maybe I need to up the dose of Omeprazole ..... but that will lead to Kidney function probs and ..... oh gosh, it all seems a bit hopeless. However, at least the thought that I'm protected against blindness is a huge boost, and eventually, as you say, I can look forward to the dose being tailed down and hopefully things improving.
Think you need to check- don't think you should take Omeprazole and EC/GR Pred. or are you taking PPI for other reasons.
Well, the doc said that as I'm taking prednisalone, I'll need to take Omeprazole in order to protect my stomach. I told her that I'd taken it for around six months continuously once before for regurgitation problems and that it had lowered my kidney function to a level of 3a Chronic Kidney Disease, which resolved itself and went back to normal after I stopped the Omeprazole (luckily I'd taken enough so that the regurgitation problem went away). I was going to phone and ask again but forgot, and also forgot it was Friday, but I'll phone the pharmacist tomorrow, he's very good on drug interactions. Actually, I've just looked at my new pack and it's actually Lanzoprazole, but I assume all PPIs work the same way.
You only need a PPI when you’re taking plain pred not an EC/GR version. All PPI are similar.. but might be worth double checking with pharmacist on what you need and what you don’t… they have a better understanding of drug interactions etc…
Yes good advise I've been on the gastro coated Prednisolone for 6 months now after 12 years on the normal ones and it's apsolutly helped get my stomach problems in hand ...along side Omeprazole and Gaviscon Advanced.... it's been a journey finding a pharmacy who can supply them or even want to try but I've found a fab one now and it's well worth it ...I do say it's a bit of an art trying to organise all this medication as you can't take any of them within 2 hours of each other.... but I'm organised now ...I also want to say that your diet can change your life I am on a full Keto diet and have been for well over a year and I feel the best I've been for years ...
Thanks pammy, I must be lucky with my pharmacy as well as with my doc because there was no trouble getting the gastro coated version. I've been taking the Omeprazole at 7am when I get my morning cup of tea, and then the Pred, Vit D and Apixaban (blood thinner for heart) at 9.00 after a large bowl of porridge. I'll see how it goes.
I take my Prednisolone vit C vit D and Codliver Oil at breakfast ...Omeprazole lunchtime & Bedtime ..Then I'm supposed to take Gaviscon Advance after all meals and at bed ...but as is blatantly obvious that it just can't happen but my doctor prescribed it that way ..but that too can't be taken within 2 hours of the Prednisolone or the Omeprazole...Haha its a work of art ...🤦♀️
Medical jigsaw puzzle!
Oh yes it is but it's very workable finerly now I've worked it all out and together with my permanent prednisolon 4mg maintenance dose... my Keto diet I've also got my pre diabetes in hand and I've felt really well for over 6 months now ...Good luck with your journey its really about listening to your body...
It's really good that you've got your pre diabetes controlled. Up 'till now I've kept mine at pre diabetic levels by avoiding carbs, apart from breakfast porridge which I need to keep the IBS calm. The porridge would spike my blood glucose on the fingerprick test to 8.9, so I used to eat breakfast and go for a forty minute walk which meant that it would be back around 6 when I returned and certainly under 6 within two hours of eating. When I was being really strict my Hba1cwent down from 43 to 37 which of course is back to a non-diabetic level. I wasn't really aiming at Keto, but I think I must have been pretty near. In later years I relaxed a bit with a small potato in the evening and the occaisional slice of bread .... and once or twice a week a naughty treat. So the Hba1c went back to bumbling around at the 42/43 mark. However over the years my appetite shrank (shrunk/shrinked???) and I found I was inadvertently following Michael Moseley's Time Restricted Eating plan, with Brekkie about 10.30am and evening meal at about 6pm. So I think that probably helped. The blood glucose reading of 15.9 at the hospital really freaked me out, and I'm so weak and wobbly at the mo I can't walk to control things (I just get really tired and make myself feel ill). So I'm going to have to retest all meals and see just how high the Prednisolone is pushing things, then work out a plan to try and control it somehow. It's really encouraging that you have managed it. Do you need any help from say Metformin or are you doing it all by your diet?
I've been down to 4mg for years now as I've never ever been able to get to 3mg without flairing...so I've on 4 mg for life now as a maintenance dose it works and I can manage everything else as long as I stay fully in ketosis I feel the best I have been for many years ...No headaches ...temporal pains..no jaw ache ...none of the GCA symptoms at all now...xxx
Gosh, well done!!! You've given me real hope that the future is perhaps not as bleak as I feared and I feel much less downhearted. Thanks.
I have had it for 13 years now but I feel fortunate that at least we can have Prednisolone and live a reasonabley normal life unlike people with other auto immune conditions like Fibro etc etc you will settle down and listen to your body and find what works for you its early days yet for you ...I'm always here if you need support and an ear to listen ...xx
Thanks. I'm about to post again to group to ask about returning symptoms and totally unable to get advice re upping from 50mg to 60. Do I do a reply to myself on here or is it best to start a new Thread?
Best to start a new thread - people don't see new things in an existing thread.
Start new thread, but usual advice in guidelines is return to previous dose.
See table 3 -
just reading your profile saying chewing is painful and tiring still isn't right. Does your doctor know this? Sounds like you had a clever 111 doctor though thank goodness.
I had 3 days of 1 gram (1000 mg) pulse therapy followed by 40 mg daily and the feeling of permanently standing on a vibration plate was horrible. Plus I went from a 9 hr a night sleeper to about 5 if I was lucky, so totally relate to how you are feeling.
I would definitely talk to the doctor re your kidney issues and the drugs. I was prescribed omeprazole but chose not to take them and instead ate really well before taking the pred. I'm 3 years 8 months in and it seems to be working for me that way.
Are you familiar with the low carb diet that a lot of us are on? It helps with weight gain and moon face etc. I started straight away and it is definitely working for me but I am not as strict as others, I just never eat bread, potatoes, rice or pasta.
I think early days is the worst as you feel quite manic about the whole thing. Sleep for me was horrible.
Also when you do start to feel you are turning a corner don't over do it or you will pay later. I did and could hardly walk for 4 months as my muscles were in the most awful state. I thought I was superwoman which I certainly was not.
you've found the best place to be with great support and knowledge here. Take your time and write everything down when you think of it as pred can mess with your memory too!
Hi Sophiestree, Thanks for replying to me. Aha! The vibrator plate description is exactly right! I think I'm stuck with Omeprazole as when I had my heart attack, they tried to put me on a baby aspirin with omeprazole, plus I ate my customary bowl of porridge with it. Didn't work, still got dreadful stomach pains. So at least the Apixaban blood thinner has avoided that. But the prednisolone seems now to be starting up problems again.
Yes, I'm familiar with the "low carb" diet. I was diagnosed pre-diabetic in 2015 and found the Low Carb diet (totally frowned on by doctors at the time, so I just ignored their diet sheet and did my own thing). So now I'm still bumbling about in the pre-diabetic figures and if I'm really strict I can actually bring the Hb1ac down to 38, which is back to normal range. Trouble is ..... I've not been really strict of late, so must try harder. I need a bowl of porridge in the morning to keep my IBS calm, and I found I could control the subsequent blood glucose spike by going for a forty minute brisk walk straight after breakfast. Can't do that at the mo because I can hardly move off the sofa!
Your comment about not overdoing things once I begin to feel better is very relevant - I do tend to rush off enthusiastically on something then regret it!
Re your last paragraph -please read the pacing link in my info post -and more importantly adhere to advice in it! 😊
Thanks for the ‘meaty’ bio; it really helps not having to prise history information out while the person is just trying to get answers as quickly as possible.
Is that the a horrible kind of normal? Yes in the early months at least, but nobody really tells you. In some ways it feels worse than the GCA or at least your whole body didn’t feel like this. Sophistree describes it well with the vibration plate. I moved in slow motion all the time and 2 hours after taking it, I felt drunk.
One just has to live with the new (temporary!) normal such as become an expert in the dawn chorus. Lots people here were super active before GCA/PMR and know that alarm and sadness when one looks back and compares with now. That is the chapter nearer the end but currently you are writing the rest of the book first.
Regards tests and kidneys. It is normal for the Neutrophil white cell to be raised with Pred which puts up the whole white cell reading. The doctor needs to look at the whole picture and other white cell levels to decide if it is something else. Normally Pred tends to make the sodium a bit high so a low reading needs a bit of thought. I didn’t get on with stomach meds at all and had a period of stomach acid issues. This was solved with enteric coated Pred which was a game changer. I did have to fight for it though.
Whatever you do, don’t try to get back to your old routine or exercise too much at this time. Like the others, I think symptoms being still present needs a medical opinion.
Hi SnazzyD, Thanks for the comment. I think I've been remarkably lucky so far, not only with a very on the ball 111 doc, but also with the support from my local GP surgery. I didn't have to fight for gastro-coated prednisolone, and I've been told how they monitor things and what they'll be watching for in the tests etc. The Rheumatologist was very good as well. So at the moment I'm quite impressed with the support I'm getting. Having read all the comments have people have made, I think I might phone the surgeryand ask to talk to the doc aboutongoing headache (though it's lessening) and pain on chewing. I was going to wait for my booked appointment, but that's not for another 10 days, so maybe it's better to have a quick chat now.
I'm quite tired now, concentrating for a long time. So, one last thing, how do I reply to everyone generally, instead of hitting the Reply button to an individual. I don't want to start a new topic, just put my own comment in among this discussion. All the best.
Just reply to yourself- and anyone new to post or having saved it will be able to read...
And agree, speak to doctor soonest, a lot can happen in 10 days!
Thanks
Right, I'm trying to reply to myself as suggested so that everyone can see it. Hope it works. First of all thanks so much for all the help and concern you have shown towards me. It is really appreciated. So, the update is that I took the advice that several of you gave to seek help re continuing headaches and jaw probs. I dialled 111 on Saturday morning and again got put through to a local on call doc, who again was so concerned that he came out to me. I live up in Cumbria and I have to say that Cumbria Health On Call (CHOC) docs are absolutely superb. Anyway, he tried his hardest to get through to a rheumatologist to discuss, but being a weekend it was no go. So he called the Senior Registrar at the local hospital and arranged for me to be admitted. To a bed! Not a chair in the corridor!! Didn't think it possible.
But then it all went a bit pear shaped. I had tests to rule out heart attack, tests for lungs, tests to make sure it wasn't a brain bleed (because of the headache and bloodthinner combination), other tests that I'm a bit vague about and absolutely nothing about Prednisolone dosage. In fact every time I mentioned that THAT was what I had come in for they just made reassuring noises about inflammation markers were down, so it wasn't a problem. Aaaaaargh! They kept me in overnight which proved to be a nightmare of noise and lights and bustle, and plyed me with great plates of tasty carbohydrates, which I shouldn't have eaten, being pre-diabetic (I did tell them) but of course I consumed it all with gusto. I also liked school dinners as a kid!
Then they tried to make me take their pills, non gastro coated at their times, which threw out my time lapse between meds routine, and then REDUCED the amount of prednisolone to 40mg instead of 50mg. I politely declined all of this and continued as normal, using my own tablets. Then when it was time for discharge they took my blood sugar and found it was 15.9. I freaked out. It's usually about 6 two hours after a normal meal, lower if I've been strictly no carbing. So I was at first told that 15.9 is OK (No - it's not) and then offered two units of insulin. Which I again politely declined, explaining that as I'd eaten a hugely carb high meal two hours before, it would be coming down anyway and I'd help it along by walking around a bit. Which I did, and it did come down to 10 pretty quickly, hopefully by now it's around 6. Anyway, lesson learned, I'm going to have to be much, much more careful with blood sugar management while on Pred.
So now I'm home, absolutely exhausted and no further forward on the "Do I need more Prednisolone" question. So I'll ring the GP tomorrow. BUT the good news is that when eating tea today (zilch carbs) the jaw had a good workout but didn't hurt at all, and there's only been one or two little runnels of low pain up the temples into the hairline. So maybe it is all going to be OK - Oh, and I found out the inflammation markers have come down from 56 to 4, which cheered me up no end.
That's it, over and out fom me and off to bed. Promise to be a bit briefer in future!!!!
My goodness what a weekend of mixed attention. As you say well done original doctor … but really bad news re rheumatologist, there should have been a duty doctor on call.
Good news on inflammation markers, but be interesting to hear what comes back from GP who hopefully can access information on weekend’s treatment/results etc.
Monday morning update. My GP phoned me at ten past eight! She'd seen the Rheumy's report and my hospital notes and was concerned that I might be in a bit of a fraught state. How's that for personal care! Anyway, she said rheumy's report said to reduce after two weeks but as I still had symptoms I shouldn't do that. She's prescribed something to protect bones, which I can collect this morning, and said we'll discuss tapering next Monday when we meet. I am preparing my notes!
Well done your GP….if the bone health is a VitaminD/Calcium supplement then go ahead, but if it’s Alendronic Acid then maybe have a think before you start. I know why they are prescribed- high doses of Pred - but you may not need them. So unless you know the state of your bone health then request a DEXA scan to check.
High doses of Pred can leach calcium from bones, but many manage perfectly well with the supplement and enough calcium in diet.. and a lot of discussion on here on AA - some good, some bad.
Having taken it myself due to family/personal history I had no problem, but would say check to see if you actually do need it, if you do,then fine, if you don’t then why add in another drug unnecessarily..
Thanks for that. It's Alendronic Acid. Plus the VitD/Calcium supplement as well. I'll think I'll hang on and ask for a DEXA scan. I have fallen a few times in the last 10 years knocked over by horse, slipped on wet moss and fell heavily onto hip on concrete path, tripped over flowerpots and fell heavily on other hip, fell off bike (several times), but no broken bones. So actually I suspect my bones are pretty strong. I'll do some reading round.
Loads on bone health in FAQs 😊
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