Hi. My husband was diagnosed with PMR just over a year ago. Initially when he was started on steroids (20mg) the pain and stiffness reduced significantly and he was able to resume his daily walks in a local park. As advised he dropped to 17.5mg after a couple of weeks and then to 15mg and 15.5mg. Unfortunately at this time he got shingles which really set back the progress he had made. Since then, as advised, he has continued to reduce the steroid dosage even though the pain and stiffness has not reduced - if anything it has got worse. In addition he is extremely tired all the time. Steroids don't seem to be working for him at all! He has only seen his consultant twice and he seems to think he is doing well. My husband says - 'From being a reasonably fit 65 year old I have turned into a decrepit 66 year old!' Do you think he should be trying some other medication e.g. methotrexate?
Taking steroids: Hi. My husband was diagnosed with... - PMRGCAuk
Taking steroids
I am so sorry to hear about your husband. It does sound like he is has reduced too far. He should be in the same position regarding pain as when he first took the steroids. If you have pain DON’T REDUCE. In fact he should probably increase to get the PMR back under control. Is there any reason he is seeing a consultant, can’t he just stay with his GP?
Hi,
There is no point in just reducing the steroids come what may…if he was fine at 20mg they obviously did work originally.
Having shingles certainly wouldn’t have help the situation, but tapering should only be done when you have no, or very little symptoms, and you shouldn’t feel worse at lower dose.
Do you know the dose he was at when his symptoms returned? If so perhaps he should go back to that, get things under control and then restart his taper.
What dose is he on at the moment? And has he discussed properly with his consultant!
This link might help both you and him understand his illness a little better -
Steroids only work for anyone in PMR if they are taking the correct dosage. You start with a dose that should be higher than you need and then taper the dose slowly, a process called titration, to identify the right dose for you - the lowest effective dose that gives the same level of relief you got with the starting dose. Of course, that also assumes you started on high enough a dose and if a starting dose of 15mg isn't enough the doctor should try more - the 2015 Guidelines for management of PMR says the "lowest effective dose in the range 12.5 to 25mg, exceptionally 30mg".
How often was he reducing in the period before the shingles? And do you mean 15 and 12.5mg (not 15 and 15.5)? What dose is he at now?
Is your husband telling his doctors he is in pain and disabled? And making it clear? He should be as well as he was at 20mg - and I suspect that not only was he told to reduce too soon too fast, he has also far overshot the dose he needs at present. PMR is a chronic condition, it lasts upwards of 1 to 2 years and most commonly about 4 to 5 years. As long as the underlying autoimmune condition is active, he will need pred to manage the inflammation it creates and which causes the symptoms of pain and stiffness. Over time it usually fades in activity and you need less pred as time goes on - but it does depend on you not rushing the tapering process and being sure you are on enough to keep you comfortable. The shingles probably poked the a/i part of PMR into life again and he didn't get it under control at the time so he is fightling a losing battel. If you too low there is always some inflammation left over each day and it builds up, like a dripping tap fills a bucket sooner or later and overflows. Pred has cured nothing, it is a management strategy to mop up the puddle and allow a decent quality of life until the autoimmune bit burns out which for the majority it does eventually and you are able to get off pred.
Fatigue is an integral part of PMR - pred doesn't manage that, it requires pacing and rest. As he gets below 10mg the fatigue may well worsen, the adrenal glands must wake up and start to produce cortisol again - and until that happens, fatigue can be severe.
Thank you, this is very helpful. He is now on 5mg.
That will contribute to the fatigue - that is well into adrenal function territory. But he is almost certainly on far too low a dose - and while the doctor may think he's "doing well" because the dose he is taking is low, if he has symptoms as a result, then it is the wrong dose and he isn;t being well managed.
I found the above post really helpful, I have had PMR for just over a year now and had a really bad flare just before Easter with suspected GCA, I was put on 40 mg straight away, my pain was incredible, took 3 weeks to get some normality back, I am currently on 25mg but my GP wants me to taper each week but I'm reluctant to reduce too soon! I now have tested positive for Covid so it will be interesting to see how I go 🤷
Was GCA confirmed or just suspected ..that really depends on how quickly you can reduce. If you have it, then a weekly reduction you don’t say how much? - is asking for trouble.
If it’s not GCA then it may be manageable but again depends how much per week and back to what dose.
Bit more detail might help us to advise.
Hope you soon recover from Covid- but don’t be reducing until you do.
Thank you for your reply. GP suggested reducing by one 5mg tablet per week to see how I go but because I still feel the pain could easily come back I have only tapered down from 40mg to 25mg since the initial 40mg dose up, for suspected GCA, at the end of March 2022. GP talks about getting dose down every time and to a lower level maybe 15mg or 10mg.
Before the recent flare, I'd tapered over the year, from March 2021, since my PMR diagnosis of 20mg to 4mg and that clearly was when the flare happened( in late March this year) and symptoms of GCA, pain in the side of my head, ear, throat and tongue and bloodshot eye all on the same side.
NO, NO, NO - NOT weekly. Where on earth do they come up with this idea????? All that does is put you at risk of a return of the GCA symptoms as the inflammation is no longer controlled and you are heading back where you came from.
This is a tried and tested tapering approach for GCA which was developed under the guidance of a top rheumy in his day and which is still used by the author, Vanessa QUick, who is herself a lead consultant at Luton and Dunstable hospital, north of London:
rcpe.ac.uk/sites/default/fi...
It was written to help GPs better manage their ongoing care of PMR and GCA patients when they have poor access to rheumy expertise.
I agree with the fatigue getting worse when on reducing dose, which I am. I am so fed up with feeling like I am going to collapse when I walk. No energy whatsoever. All my rheumatologist does when I am down to 1mg and feeling rough is to up the dose again to 5mg, which is fine, but I don't want to be on these for the rest of my life.
Instead of just taking the easy way out - has the rheumy not sent you to an endocrinologist to assess your adrenal function? Though in fact, the rheumy or even your GP can do that with a simple blood test for basal cortisol when you are at 3mg or below.
If a basal cortisol test - a blood sample taken any time between 9am and 1pm having not taken pred in the previous 24 hours (you wait to take that day's dose until after the blood sample is taken) - will show if your adrenal function is returning. If you manage to get to 1mg without PMR symptoms returning, then increasing the pred dose back to 5mg merely prolongs the problem, Even 5mg can be enough to suppress cortisol production again and sets you back, prolonging the return of adrenal function to produce your own corticosteroid, cortisol, which is essential for the body to function.
Hi,For what it’s worth, I have been on prednisolone for pmr for a number of years, and am now down to one mg a day. I was an active 74 year old male when it began, and I have basically followed all the advice as given by PMRpro in her reply to you. I have always been able to go out for a walk, and do other activities, but it is important to take it easy, and not try to do too much. Luckily, I was retired at diagnosis, and taking a daily siesta certainly helped, especially with the fatigue that most of seem to get at some point.
For sure the shingles won’t have helped. I am not medically qualified, but the advice already given re dosages makes a lot of sense to me.
Good luck
Paddy
I can only agree with the advice that you've been given above. I got PMR when I was 59, started on 15mg of pred which worked within a day. I stayed at that dose for 4 weeks before starting a very slow DSNS reduction and eventually got to zero two and a half years later.If I felt symptoms returning I would stay on the higher dose and not try and reduce until they had subsided and I was in a 'good place'.And I was one of the lucky ones by all accounts in that I didn't have any flares and my adrenal glands seemed to be happy to re-start when I reached a low dose.
So, my advice for your husband is to go back to the GP and insist on going back up to a dose that takes away the symptoms, stay there for at least 4 weeks, and then reduce very slowly by no more than 10% each time, leaving at least two weeks between finishing one taper and starting the next. And only start the next taper if there is no return of symptoms and life is good with no stress ahead! If symptoms return, go back up to a dose that works and wait another 2 weeks after they have gone before starting to reduce again.
Good luck!
PMRPro’s post is spot on. When he was hit with the shingles, his PMR probably flared and his dose should have gone up, not down! And he should never have been pushed to decrease while in pain. He probably needs to return to 15mg since that was the last good dose and then go much much slower! 2.5mg every 4 weeks, ONLY if the adjustment can be made without pain returning. (some mild pain the first few days after adjusting is normal but if it lasts over a week, it’s not time to reduce). Once you hit 10mg, drops should not be more than 1mg but most of us find 0.5mg to he necessary. His doctor needs to know his pain is intolerable and he needs his dose increased. And methotrexate comes with tons of side effects of its own. While some people are successful with it, I personally refused it. I don’t do well with most drug side effects. Research it and then decide. He can say no even if the doctor insists.
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