After 7 years+ I am currently on 3mg of pred after doing a slow taper from 3 to 2.5 but going back to 3 as I have upper arm and shoulder pain and some leg pain in the mornings. This improves as the day goes on and by the evening I am quite good although not totally pain free but I don't have any problems doing anything by then,
I am going on a short break, 4 nights, with my daughter at the end of September,the first since Covid started and am unsure whether to try a few days of a higher dose to see if it improves and whether I can do that now and again when I go away or whether the pain could be what I have read as pain from steroid use and not PMR.
I am sure that I read previously that steroids long term can cause pain by themselves or perhaps I'm wrong. I'm getting a bit fed up with the discomfort. I would like to speak to a doctor but only seem to get text answers which are never enough.I was signed off by my rheumatologist last year as stable but to be honest the check ups that I was getting were over the phone and not the actual rheumatologist so again not good enough I feel.
Sorry for the ramble.Having a moment .
Thank you.
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Daisymay
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Well I'd stop that taper for a start. The idea is to find the dose where you feel good - and it isn't going to be 2.5mg is it? What dose were you at when the rheumy decided you were stable?
Prof Dasgupta told us he often keeps people at a maintenance dose of 2-3mg as it reduces the incidence of relapses - needing lots more pred.
I had been fine at 3mg. The rheumatologist was happy fir me to stay at 5mg but I wanted to get lower and was good at 3 for months, in fact since late last year and was very stable. . I have been back fully to 3 for a few weeks now, I never actually got to 2.5 full time,I ended it mid taper. Just wondering whether to try a bit higher for a few days.
Been there, done that, Constant pain is awful, even when it is very low level. If anyone were to ask me now why I took so much pred I would tell them that there was no alternative offered and the next option might well have been topping myself - adding to a different statistic.I was interviewed in a pain study a few weeks ago and trying to express why my assessment of my pain was well higher than the rheumy's would have been. No, at that moment nothing hurt really badly - but for the previous week there had been almost constant niggles unless I was sitting still. Almost any movement. especially walking and standing caused low level pain. And it gets you down ...
This is useful to me. I have been wondering how to express myself ( effectively) to Sarah. I am hardly ever painfree ( mild) but I find that feeling generally unwell is much worse, so I am not seeking steroid sparers. It gets difficult to ask for help when you cannot imagine what even a good doctor could possibly do. I feel like this Adrenal, challenging last stage is very hard to read.
Oh yesl the adrenals being challenging....well, hard to explain, but feeling unwell all the time is draining in itself....Just sat for 3 hours in garden with son and OH, lovely catchup, had some great laughs, and moans about the world of course, but I am so exhausted......amazing how our quiet routine is.......but must keep trying.....
Expect you are looking forward to Australia soon........Will be lovely.....
A trip to the supermarket, which I find exciting these days always results in an urgent sleep when I get home. I live in the fast lane. To be honest, I am apprehensive about Australia, the journey and the emotional and physical demands of reuniting with the people I love most in all the world apart from the two who are coming with me of course. They have never seen me this broken and limited. Of course it’s my Adrenals. This is not what loved ones expect at the tail end of a disease.
Are you breaking your trip to Australia, SheffieldJane? We went straight through many years ago, but not any more. We usually stay overnight (or 2) in Singapore. It makes a huge difference to jet lag.
Mind you, I’ve not travelled long distance since Covid and being diagnosed with PMR at the same time.
Take care Jane . I do hope you are breaking your journey half way to rest , relax and enjoy and pamper yourself . Last time I flew long distance I took homeopathic rescue remedy and I was fine . All the best for your wonderful catch up in Oz
When we saw our daughter in Vancouver after 3 years our joy was so great that it overcame the pain and fatigue and in the end I actually felt far better. May it be the same for you..
You are right, not what loved ones expect at tail end of disease, and neither did I!....can you not send some info to enlighten them....but I'm sure they will just be very happy to see you whatever your limitations.....
You are spot on. I always feel unwell - hard to describe...just general feeling of malaise...sometimes I don't notice it, especially when I can disappear into my work. But then I emerge totally exhausted/collapsing. The adrenal stuttering at this stage I guess is part of the story. I can't even imagine that 'normal' lies ahead...but pain is controlled and I am still on this planet.
My Rheumatologist explained yesterday that this is threefold, symptoms of the autoimmune disease itself, the struggle our own Adrenal system has in beginning to produce the cortisol we need and side effects from the medication ( particularly Pred). All combining together in one horrible blurg! The long term effects of Pred exhaust the system. The autoimmune system never forgets when it has been compromised by a particular disease and continues fighting it. This explains feeling dreadful without specific pains apparently.
Yes constant pain is misery. Hiding it so folks don’t see is wrong ( that is what I do) otherwise peeps think you are constantly complaining. I felt the same thinking life not worth living. BUT staying at a higher dose when the GP dishes out the prescription and they cut you down with telling you causes another predicament. I just despair at the situation. I am in the same situation with aching bones especially in the mornings. How many folk find seeing a GP is difficult because you get passed off on ASK my GP and never get to see the same Gp
Thank you. Sound advice all round . I know it's common sense and I should know what to do after all this time but it makes me feel better and gives me confidence to have both your helpful input.
Same here, Sufferec. But I’ve never had any support from a GP about PMR. But I know I’m eternally grateful for this forum - and there’s always someone out there.😃
I wonder if changing the time you take your Prednisalone dose could help you. I take coated Pred at bedtime and my mornings and daytimes are better. I start feeling pretty awful at around 9 pm when bed is a realistic option. I always feel better in bed. I have changed my timings on a few occasions to manipulate my best times. If that makes sense.
I had thought about this .My pred is uncoated so I worried about it lying around in my stomach when I was sleeping I havnt taken Omeprazole for years as I didn't like taking it long term and have never had a problem with pred . I may try taking pred after my evening meal and see if that helps in the mornings. Thanks
Hi, Everyone - I didn’t know that either ( about uncoated pred dissolving, as it were, satisfactorily ) … I have just been given TCZ 6 weeks ago, but also on methotrexate still, and of course trying to lower the Pred, currently at 10mg. Consultant wants me to come down 1 mg every three weeks, the idea being that the reduction will be stabilised by the TCZ. Only got to 10mg after 2 years’ GCA. So my experience is different from other posts on here, I don’t get pain as such ( very lucky ) but terrible wobbliness and feeling as if made of lead simultaneously. I am told this is indeed the steroids. I take all meds at breakfast.
After 6 years and a diverticulosis diagnosis I have reluctantly had to take one dose of Lansoprazole with my Pred. They have stopped doing 1 mg coated tablets, so in order to cut tablets and to protect my colon, I take uncoated Pred 1 mg. I agreed to the prescription for Lansoprazole but take less than is prescribed. I know how you feel. For years I took Pred with Greek yoghurt and a little honey without any problems. Following Tocilizumab for a year, I was diagnosed with Diverticulosis that can become inflamed and painful ( diverticulitis). My strategy appears to work without side effects.
Thank you. It is years since I have seen a coated tablet. It is interesting to read how people find their own best ways to cope with taking pred to make it tolerable.
I’m in West Yorkshire. There was a stutter with slow delivery of supplies but still getting them and no mention of coated being unavailable. I don’t have a problem with GP prescribing them. Perhaps have another go at yours? Good luck 🌺
I just picked up my 1 mg coated in the Midlands. My previous GP said they weren’t available but my new GP said they were more expensive but as I had diagnosed GERD I could have them.
I suspected as much. Boots don’t look at all. There is still the issue of needing uncoated tablets to cut, so maybe I’ll stick with it. One Lansoprazole seems to protect me without ill effects so far.
I’m similar time frame to you Daisymay . I got too excited about getting off of pred before Christmas and I had a big flare . So do be careful ! This winter was my worst ever . I always thought I would be able to deal with real depression . But I just gave up . Reality is giving up and not doing anything physical improved my pain situation. .! Next year I’m going north for a do nothing holiday !
I never try to rush a decrease. Always .5 and takes weeks but this time I had to go back up. I look after my husband so can't take time out and always hoped that doing lots of physical work would somehow knock the pain for six. But however much I do its still there. Taking a short break away in Venice with my daughter ( and the other one 'dad sitting!) so apart from lugging a small suitcase can relax a bit. We'll that's the theory!
Many thanks to Daisymay and all the rest of you. I have been wondering whether pred is mimicking PMR symptoms in my case . I am coming down by 1/4 mg and actually feeling rather better to my surprise- not so much pain in neck shoulders and legs.
I have read about this , that pred can be the problem. Its very difficult to know what to do. It's trial and error isn't it. Hope your pain continues to improve.
I was the mad person who thought of camping in Jersey and France with all 11 of our family to celebrate my 80th birthday. The fact that I am still alive must indicate, I think, that at last my adrenal glands are beginning to work….
The great thing is that coming home after camping everything feels like a luxury…Bed. Bath. Walls. Ceiling. Carpet. No ants in the bedding….seriously though we had a wonderful time!
If it’s like the photo -i.e. with arrow and name greyed out) then it’s a reply to a reply (as yours is to PMRpro). If you (or anyone) was replying to the original poster there is no arrow nor name,,look at the first reply to you from PMRpro.
Daisy May I sympathise! I was comfortable and living life well at 3 mg, for the last 4.5 years. I tried many slow tapers to get lower but as niggling pains came n, I decided not to risk it and went back to 3mg. I doubted myself that I wasn’t being brave enough and then I switched rheumatologist and he suggested I try again and use pain killers he prescribed to see if I could get through the pains. I did this recently. 2.5 wasn’t bad and I stayed there for 3 months and went down to 2 mg. it was ok but I never felt quite as good with coming and going familiar pains like at the onset though lovable with certainly. But after 7 weeks of this, more pains came and then it became what I’m now convinced is a real flare. So much pain in neck and shoulders that I can’t sleep at night and pain in n my knees so much that I can’t hike which is my greatest joy. I’ve gone up to 8 mg just to be able to manage as I cant live with at pain. I now feel that I pushed it too far and regret trying to go lower. I think I was really lucky to have been able to settle so long without flares at 3 mg. now even at 8 mg it’s not enough but I’m on holiday and don’t have enough pred to go higher. I told my rheum that I’d be happy to stay on 3 mg for life and just live now. I may not make a great age so why lose life and quality of life now. He didn’t agree and is going to try me on mexotothate whatever it’s called. I’ll give it a go but first I need a plan to get this thing Nader control again. I’m scared I won’t be so lucky this time and be able to manage at such a low dose. So I’d advise going back to 3 mg. I think the cumulative effect of weeks on the lower dose caused my flare. But I know everyone’s different so it may work for you. Good luck.
I think I may have reached my lowest at 3. Its so dispiriting isn't it when all is going well and you think the time is right to try to reduce just a little and it doesn't end up as you wanted. I will always keep trying but not for a while. I may have to go up a little to get rid of my current pain but first I am just trying to see if I feel any different by moving the time that I take the pred. I hope that in the future you may be able to try to reduce again but I know it's not easy.
Prof Dasgupta has told us he often keeps patients at 2-3mg because it reduces the risk of relapses. Even low levels of pred do have some risk - but there is no guarantee that MTX will get you off altogether and then you have both lots of side effects instead of just one. It s one thing for a patient stuck at higher doses - 3mg is a different matter.
Head of rheumatolgy at Southen Hospital until he retired in March and THE name for GCA in the UK - without him this charity and the forum would not exist. Improving the diagnosis and management of GCA was his life's work. He's forgotten more about GCA than most people ever know.
Hi Daisymay (great name). I am also taking 3.5mgs but have not been ‘right’ for weeks now. I am constantly dizzy with neck and head pain. I also had a collapse which scared everyone around me and made me very weak for a few days. I did eventually get a face to face with a gp who has referred me for an ecg. She did not listen when I told her that these episodes are always after eating. I wasn’t conjecturing - it is a fact but she poo pooed that. However, I’ve also just started taking statins and have felt lousy since I started them. It’s very difficult when you get to these lower levels to work out whether it is lack of pred or something else. Good luck with your journey. I’m off to Shetland on Thursday and may well up the pred!!
Sounds possibly a bit arrythmia-related. Eating can be a trigger - so she could do with some education. I felt awful on statins both times - never again.
I was talking to my daughter in Edinburgh last night - glorious weather until she had annual leave 2 weeks ago!!! Take your cardy with you!
Thanks pmrpro. I’ve had the most horrible pains in my head and neck and been feeling dizzy. Have decided to stop the statins as I’ve felt weird since starting them. Yes, cardy, trousers and socks and wet coat. It’ll be fine!!!
I am such a novice at this (diagnosed with PMR a month ago) that I wanted to ask for clarification about adrenal insufficiency. Does it happen as soon as you start the prednisone and start shutting down your own cortisol production or is it a more gradual process? Thanks!
Thanks for this! Because my vision in blurry from the steroids, it’s hard for me to read on-line. Is there a way for me to get a hard copy of this? It looks great!
Send me a message/chat -just tap my picture -takes you to new page -give me your email (not here on open forum) and I’ll send you a word copy. Or just print off the post from your device.
No - takes up to a couple of months for the producion of cortisol to stop really, depending on the dose you are on. But at doses above about 10mg you are taking plenty of corticosteroid for the body to function day to day - although at the lower end and if you are in a very stressful situation or sick the adrenal galnds are no longer able to produce the spike of cortisol normally provided to help the body deal with the stress it is under. That is why it is important to carry a steroid card stating you are a longterm steroid patient for healthcare professionals to be informed.
I've been on pred for 13 years - I do get a bit wobbly if I experience a big emotional or otherwise stressful thing but never really been unwell so far.
sounds familiar to my situation, can I ask where and what source did you hear, long term steroids can cause pain themselves? Ive been on pred, 6 yrs now, trying to taper to 4 mgs currently,
Pred itself can cause joint and muscle pain though it isn't very common. They may also cause pain if you develop steroid myopathy - though my steroid myopathy wasn't painfiul at all.
Ah, steroid myopathy! Could this be why I feel so weak on 11mg and my strength and stamina feel definitely reduced. I’ve googled the term but can’t find anything other than specifically medical accounts. Do you have links to good, accessible info please PMRpro? Or one of your own explanations…..
Am I right in thinking this is a somewhat overlooked possible side effect of pred? Or maybe we do talk about it all the time, but just don’t use the technical term?
Doctors talk about it all the time - and tend to blame pred and myopathy for a lot of things! I suspect it isn't always steroid myopathy - not according to this article:
Sorry, a bit much medical science language! Proximal means muscles closer to the trunk, distal the ones further away: so thigh muscles are more affected than calf muscles for example. As it says - aerobic exercise does help prevent it, walking as much as you can is important. But we should all be offered physio support from the outset and be monitored. We very rarely are. And they point out that a muscle enzyme is raised in myopathy, CPK, something that should be checked at diagnosis of PMR and hardly ever is, and I bet isn't raised in most patients with wobbly legs either.
I'm not saying it doesn't exist as a side effect of pred - I'm saying it probably isn't as common as a lot of doctors claim and it could be avoided altogether if they took a bit more interest in us (some hopes there). I suspect a lot of the incidence we are noticing at present has something to do with the tremendous reduction in activity during lockdown and that if they engaged with us and made exercise a prescribed part of our management we'd do better.
Unfortunately can’t read the medscape article as would have to login as a professional- which I’m assuming you can do.
Anyway, your explanation is very helpful. It is very definitely proximal muscles that are most affected (shoulders, upper arms, thighs, hips). I have been adopting the “rest, then rest again “ mantra but from your post it seems I should also gradually introduce more exercise, walking and gentle stretches. Always hard to know whether you’re overdoing it though…..I tend to find that one day of light exercise is followed by two days of exhaustion!
I have a physio appointment for 4 October, I explained to him online that I wanted him to take PMR and OA into account and see what he thought…..so I’m hoping he’ll advise me well. I saw him years ago before my knee replacement and was very impressed…
Thanks again for explaining - I now have another project to add to tapering plans, supplements, meds, etc etc.
I decided to ‘register for free’ and found I already have an account! Must have been from years ago…..! Anyway amazingly I took a guess at what the password might have been, it was accepted and…I’m reading the article! 😂 Many thanks x
PS It is the proximal muscles I’m concerned about - was a typo in my first post about this which I’ve belatedly edited….😵💫
No, I’m sure they didn’t…..I probably said I was in something like a PAM - as we used to call ‘professions associated with medicine’ - something like that anyway!
That’s really interesting , thanks… I think she ( rheumy ) expects me to decrease the methotrexate along with the pred but is leaving it at 10mg at the moment. I never expected to be given TCZ. - I was always told I was fine on Pred until it was suddenly noticed I’d been taking it for two years and on reduction was getting flare up signals for the third time. I’d reduced from 60mg twice but have never got lower than 7.5 before back up the ladder. Well, we’ll see…
Hi, I am on a slow taper as well. I have developed a series of aches and pains as well. My rheumatologist has said it's because the steroids mask other problems!
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