PMR nightmare

[Berts1958]

hi, first post people, had PMR around 7 years, had 18 months clear then flare ups. Been on steroids all this time, just feel my advised tapering is far too quick from 30mg , 2.5 mgs taper each time, and as I have read on here it just flares up again, then you have to go up again.i am now told I have to get off steroids and they tried me on sulfasalazine for 2 months and made me worse, now into 5 week of methotrexate and no steroids so bumbling around again trying to get out the bath and car. Anybody had results of really slow taper as in 1 mg per month, or less., steroids are the only thing that seems to give me a normal life. Told it could take 2 yrs to taper from 30mg, that I don’t mind but don’t know what GP or rheumatology would say about providing steroids for that time. Thx for your time.

[Groggrim]

Hello and welcome. There are such knowledgeable people here, if you hang on a while you will meet them and they will help you.From my own experience I would advise that it is crucial to taper slowly. I went too low too quickly and had to start almost again.

[Berts1958 in reply to Groggrim]

Thank you

[PMRpro Ambassador]

Hi and welcome.

"Anybody had results of really slow taper as in 1 mg per month, or less"

That is pretty much what we recommend here - any taper step should be not more than 10% of the current dose so by 10mg that is 1mg per month which all the guidelines say. And all the guidelines also say that the dose and taper should be adjusted according to the patient;s individual needs and experiences. Unfortunately - most doctors ignore that bit!!

You appear to have come up against the "PMR lasts for 2 years" myth. Maybe a third of patients are off pred by the 2 year mark - a majority need pred a lot longer than that and some studies find as many as 40% of patients are still on pred at 6 years, albeit at a relatively low dose.

I had had PMR symptoms for 5 years before I was offered pred - and in under 6 hours I had a minor miracle and could move again. At no point in that 5 years was there any sign at all of the PMR burning out - nor in the over 15 years since I started pred. I'm unusual but there are quite a few on the forum who are way over this putative 2 years and who are still getting their pred.

If this is your general experience with these doctors, I suggest you try to find someone with a rather more realistic view of how PMR works. You say you were clear for a couple of years and then it recurred. That isn't very common - but it does happen often enough. If it is PMR, you need pred, nothing else works for everyone. Tocilizumab works to replace pred entirely for half of patients - but it isn't offered for PMR in the UK and the other half of patients need some pred for the other underlying causes of the inflammation that tocilizumab doesn't work for.

[Berts1958 in reply to PMRpro]

Thank you for your reply, I do not hold a lot of hope for the Methotrexate to work, even if it does its an immune suppressant so prob pick something up to cause another flare up.

I will try to convince doctor to prescribe me enough steroids so I can taper real slow, as nothing else has worked, they are fixated to get us off steroids asap, but all you do is have to start again, so end up consuming more.

Strange having to suffer for 3 months to find out Methotrexate does not work as they tapered me off pred in 6 /8 weeks, then within 3/4 days on pred like a new man again. Slowly slowly catch a monkey I think.

[PMRpro Ambassador in reply to Berts1958]

Even if MTX helps it very rarely REPLACES pred and I have no idea what it is gives them the idea that sticking someone on it means the pred can be stopped so quickly. We say the same - the rush to get a patient off pred often means more is used overall. But then - we see far more patients on here than any doctor sees in a lifetime.

I do hope you can get them to see sense and slow down and give the pred a chance to do its thing. Which, when all is said and done, it does pretty well.

[Bronte11]

I have been on prednisolone for PMR and GCA since 2018. I have tried to come off it many times, but without success. I have had flares, during these years and the prednisolone was always increased and then I would have to reduce down again. Initially, I felt that I needed to make a big effort to keep reducing and "get off" the prednisolone, but I then had a conversation with my Consultant and I said, something like this...."Why do I have to keep trying to come off this prednisolone, when I never achieve it and all that happens is that all my symptoms come back and then I suffer and it doesn't do my body any good." I said, "I fully understand that in an ideal world it's not good to be on steroids. I realise what the side effects are, but at least, with prednisolone, I can function. " I then told her about my father living till he was 90 years on 5 mgs prednisolone and told her that I'd be happy to take my chances on the steroids. She agreed and said just keep taking 5mgs and she wrote a letter to my GP stating that, after discussion with me, she had agreed for me to remain on 5mgs permanently. So, I've been on 5mgs for a couple of years, or thereabouts. Ever so often I try to reduce the steroids, but I never succeed. I don't ask permission to do that. I just do it without any Drs input. This year I'm due to have a bone scan, all being well. If there's a problem with that, then I guess I'll be having another conversation with my consultant about my medicines and specifically about the prednisolone, but I'll just have to cross that bridge when I get to it. I'd rather be able to walk, move around, get out of bed properly, plus be free of my GCA symptoms and because of that I'd rather be on steroids.

I hope this makes sense and is of some help to you.

I can't imagine what I would've been like if they'd taken me off steroids after two years.

[PMRpro Ambassador in reply to Bronte11]

And a dodgy dexascan doesn't mean no pred - it means add a drug targeting the bones! More than one way to skin a cat!!

[byebyebicycle]

Hi there, I started on 15mg in December 2023 and was advised the seemingly normal taper 15 -> 12.5 -> 10 in 1 monthly steps. I tried 3 times to get to 10 and failed and then I found this forum and learnt of slow taper. So in August 2024 starting at 15mg again and reducing 1mg per month according to DL slow taper. Getting successfully to 9mg and from then on I'm only reducing by 0.5mg per month and now I'm on 8.5 and I'm going to stick with the 0.5mg per month taper. Luckily my GP is in complete agreement and leaves me to it checking in with him every 6 weeks for a check on my blood. It is very clear to me slower is surer ! Of course things can change when I get to the lower mg level but that's for later and I'll take it as it comes. Good luck.

[MiniSpec]

I'm sorry to hear about your problems with your GP concerning Pred. I've been on Pred for just under 15 years so far, and am currently on 4mg per day. The last time I saw a rheumy she wrote to my GP that I'd probably be on Pred for life.

I thought that was quite sensible of her, and I must say I'm happy to comply, as Pred is the only thing that allows me to live anything like a normal life. With too little, or none at all, I know I'd be bedridden for life, and that's no good for anyone. So I would say that you need to either argue with your GP until he/she gives you sufficient Pred to remove all your bodily aches, or find another GP who will.

[Berts1958 in reply to MiniSpec]

Thank you I will get her to write to my GP for steroid supply, you have to have this to actually know others plight with what goes with it. Thx again