Following my first post , I had such good advice and the message seemed to be that I maybe needed to up my preds to 20 mg from an initial rate of 15mg that wasn't quite doing it for me after one month . I immediately went to 20 mg and the reults over the last 10 days have been so good , gone are my pains and stiffness and im feeling so full of life and I feel so positive .
Yesterday I had my first appointment with a rheumatologist who was really attentive but he seems to think that I maybe don`t have pmr as my symptoms are not totally symmetrical and I suggested that I thought I might have had this coming on for a a few months before I saw a doctor in November who diagnosed pmr and blood tests showed readings around 50 for crp and esr .
The rheumatologist wants to get me off steroiods starting now and coming down by 5mg per week and im off them in four weeks ! , this is really concerning me as im feeling good and I don't want to go backwards to how I was feeling before . Its a strange feeling this love hate relationship that we have with pred . Does anyone have any similar experience in being advised to come off the steroids ?
I really appreciate any advice that is out there as you all have such a wealth of knowledge , and kindness in taking the time to reply .
Have a Merry Christmas
Tim
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jura19
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Hi, sorry you are confused about what the rheumy has said. There is no way on earth i personally would be tapering at 5 mg a week. If my calculations are correct you have been on pred for 30 days and so your adrenals will not be working and to taper that quick will make you feel really ill. Can you see your gp again and ask him what his opinion on this taper is? I am sure others will be along with more experience on tapering this quick. Keep us up to date on how you go.YBB
There have been a couple of patients who have reduced quickly, because of a wrong diagnosis but not sure if they are still on forum.
If your Rheumy doesn’t think it’s PMR, then has he offered an opinion as to what it might be?
Don’t get his comment about it coming on for a few months prior diagnosis - that’s what happens to most people. It doesn’t usually come on overnight in most (occasionally, but rarely). He’s talking rubbish! Sorry!
As for coming down 5mg a week, that is going to be very difficult. It can and is done if you’ve only been on for a couple of week, but once your adrenals have stopped functioning (as yours will have ) it can be downright dangerous.
As YBB suggests please speak to GP and explain your concerns. Hopefully between you, you can come to a more realistic reduction plan.
It is confusing and I can understand how perturbed you are .
Unfortunately , many Rheumys don't realise that some people can present slightly differently , and some doctors very cruelly try the rapid taper if they aren't totally convinced of the diagnosis of many different types of Diseases to see what happens to you as though you are a Lab rat. If , or when, the full set of symptoms return , then you get popped back on the drugs again .
I suppose you can only try and prepare yourself as much as possible , including being ready to be able to just concentrating on rest and tapering ( what a perfect time of year to have to just think about your Health , was this person called Doctor Grinch or Prof. Scrooge at all ) . Good vitamin and mineral rich nutrition , lots of fluids , gentle stretching and slow joint rotations to reduce the aches. Be prepared to try Paracetamol for rebound Pain in the muscles , especially if you had any nerve issues or old injuries that played up before .
Importantly, keep a look out for your symptoms and get a little notebook and chart your pain level and where it is each day so you can show them what happens .
If you feel the whole PMR , or Symptoms Pre PMR Diagnosis , begin to return , contact the GP or Rheumy and ask for extra help straight away , don't let it linger on or it will be harder to get your treatment back on an even keel again.
They should do your markers again and make a final decision from there.
I'm sorry for you , I've done a few fast tapers for other reasons and I know it can cause some sleepless nights , whooziness , unusual pains and a lot of Fatigue as you withdraw.
But it's the original symptoms you need to keep a close look out for , any possible hint of a return and go and bang on that Consultants door.
The experts will be along shortly I'm sure but from reading posts here for months and from my own experience I can tell you that PMR symptoms are not symmetrical (my left shoulder far worse than my right for instance). And I think you are right to be concerned at that VERY drastic prd. reduction. Way too fast and I think the max. dose reduction should be no more that 10%. My rheumy advised dropping by 5mg per month but luckily my GP seemed a bit more knowledgeable and suggested 1mg and I didn't even manage that. I am now down to 10mg from 15mg started 4 years ago but haven't succeeded in staying below that for any length of time. My GP is happy for me to manage myself and I won't be going back to a Rheumy any time soon!
Pleased to hear the 20mg has been such a success for you and that you are feeling so good after months of problems. Is your GP as good as mine about letting you do your own thing? If so I would stick to the 20mg for a month and enjoy feeling great, then look at one of the many tapering plans (DSNS) mentioned on this site and try the reduction slowly and gently.
Good luck to you, and please remember I am no expert but I wanted to respond quickly as from the title of your post you sounded worried and in need of a bit of support🙂
Ask your GP for a Double Appointment and take the BSR Guidelines on the Diagnosis and Treatment of PMR. Go through all your past history and write it down and take someone with you. Than at the end if you are not satisfied, ask for a different Rheumy for a second opinion.
I do so wish they could get it into their heads that not all cases of PMR are the same. Almost no-one is totally symmetrical in their symptoms and quite few have a slow onset - and more would identify a slow onset if they thought about it. I had a slow onset and then, suddenly, one morning I couldn't move. And every flare happens like that.
In your position, I would go back to the GP who diagnosed you and talk to them. It scares me when rheumies decide it can't be PMR and force patients to reduce so fast. Once you allow a flare it is almost always more difficult to get it under control - no-one knows why. And so often a PET scan shows that yes, it IS PMR after all.
By the way - 5mg per week is sort of OK to reduce to zero to stop pred - the 10% is for tapering and there is a difference between the two things. I say sort of OK - it is cruel and unthinking.
Yes but with an old fashioned Rheumatologist . I don’t know why Pred is feared so much when the new drugs invented have such terrifying side effects.
I am so glad that you eventually felt the relief. Of course you want to taper off Pred now your symptoms are settled. I stayed there for 6 weeks then did a 2.5 drop. When I got to 10 mgs I dropped ( slow taper ) by 1 mg ( using the slow tapers pinned on this site). You would suffer with his 5 mg drop. I hope you can reason with him. Good luck 🍀
Thank you all so much for your advice , it is really appreciated and you all know so much on this subject . As keen as I might be to reduce the steroids it is difficult to be told that it may not be pmr ( but I think it is ) and that I might have to return to feeling pained and stiff again , that seems like two months of getting nowhere .
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