I had a phone consultation with the rheumatology consultant yesterday. She maintains that I have polymyalgic onset RA, rather than 'proper' PMR and that, therefore, I should be able to reduce my prednisolone from the current 15mg/day to 12.5mg/day for one week, then down to 10 mg/day. Apparently this will be easy and the fact that I've been taking MTX for 6 weeks will mean that everything will be fine and dandy.
I'm not sure that my body realises that the inflammation is not 'proper' PMR and that a swift reduction in steroids will be easy.
I have a dilemma. Do I trust the very experienced and well-regarded consultant and give her dramaticaly swift reduction in prednisolone a go or do I trust my instincts and try to go much more slowly? If I take the latter option, I will have to be a little creative with the truth by claiming to have tried the rapid taper and experienced a flare to get the GP to prescribe enough pred for the slow taper.
What is the basis for your rheumatologist's diagnosis? I assume she's run the appropriate tests. I believe that sometimes people are indeed diagnosed with RA after an initial diagnosis of PMR. This: rheumatology.medicinematter...
'Indeed, the ACR clinical practice guidelines for the treatment of RA emphasize that “the risk/benefit ratio of glucocorticoid therapy is favorable as long as the dose is low and duration of therapy is short,” and the EULAR recommendations state that steroids “should be tapered as rapidly as clinically feasible.”'
I don't disagree with the RA diagnosis - my original diagnosis was RA and PMR. The RA started, in retrospect, a couple of years ago and grumbled along with me putting the pain and discomfort down to old and and presuming that it was OA. I did have a major RA flare-up over Christmas. My knee swelled up like a rugby ball, the PMR started in January and was a 'text book' rapid onset of pain and stiffness.
It was on the basis that I had RA that I agreed to take MTX - to reduce the potential, long-term damage to RA affected joints. My concern is that "as rapidly as clinically feasible" is much faster than I think is ought to be!
If you have Rheumatoid Arthritis would Tocilizumab/Actemra be a consideration to manage the condition as you come off Prednisalone? Worth doing some research. I would trust your instincts too. No matter why you have been prescribed Pred you still have to taper off gently. It will have been dealing with Polymyalgic symptoms and your Cortisol requirements. In my patient only opinion.
Thanks Sheffield Jane. The pred and MTX seem to be doing a pretty good job of managing the PMR-like symptoms and the RA so I don't think that I need to add any other nasties into the mix at the moment but I will do more reading and bear them in mind.
Personally I would prefer to know the diagnosis with a bit more certainty and have been through two rapid tapers in order to get to that stage. We are all different though.
If you try the rapid taper (assuming it doesn't take you below 5mg which is where you really need to proceed carefully) and the pain returns, then that may help you both understand what it happening.
If it doesnt, you have avoided a longer term on higher steroid dose.
I would agree that reducing steroids is tiring and can produce aches and pains for a short while, or a full on return of symptoms. Immediate pain tends to be withdrawal and will respond to paracetamol. Pain from flares or overstepping the lower end tend to build more slowly when tapering. I've experienced both and you do get to know the difference.
In my opinion, the treatments for these things can be quite different therefore getting to a point where the diagnosis is more certain may open up better treatment options. Best of luck whatever you decide.
Hi CoffeebeansI don't disagree with the RA diagnosis. I suppose that the difference between PMR and RA and Polymyalgic onset RA is just semantics; in either case I obviously want to avoid taking more steroids than necessary.
Thank you everyone for your comments. I think that I will do a phased taper, as I did when I moved from 20mg/day down to 15mg/day. It wasn't nearly as slow as the DSNS taper but a little more gentle than the sudden rapid drops that the consultant would like.
I think you have to try it - and if she is right it will be a good thing, if she's wrong, maybe she will learn a lesson!To be honest, I would always say TRY, the drop from 15 to 12.5 is pretty standard and the Quick and Kirwan paper starts like that. I wouldn't however only stay there for a week, I would take it a bit more conservatively as Q&K do. If you can't cope with 12.5mg you won't do any better with 10mg will you! And it would be unusual for just 6 weeks of MTX to make that much difference.
I'm confused though - you already had RA symptoms and the PMR appeared in January - how's that polymyalgic onset RA?
"I'm confused though - you already had RA symptoms and the PMR appeared in January - how's that polymyalgic onset RA?" Your guess is as good as mine! I don't really mind what it's called as long as the treatment is appropriate!
I was diagnosed with pmr over 7 years ago. I responded very quickly to steroids but was unable to get below 10mg so was referred to Rheumatology. I saw several rheumatologists, each one with different ideas of what I actually had. I was made to taper but just kept flaring. I had a diagnosis of Sero negative RA, Psoriatic arthritis, Inflammatory arthritis and RA. I have tried Methotrexate alone, and with biologics but I stayed on steroids as I still couldn't come off them. I am classed as Steroid dependant and I am on 4mg now. My rheumatologist seems ok with me stuck at that. He still thinks I have pmr as well after all this time.
Gracious, it sounds as though you have had a terrible time. I'm pleased that you have support to maintain your current dose of steroids but sorry that you have got stuck there.
I have tried going lower but I flare up again, so my go suggested I stayed on 4mg, she said that opinions have changed since I started on steroids, when she actually used to try to get me to come down too fast.
No, she said that no one would argue that I shouldn't be on 4 mg nowadays as opinions have changed since when I first went on them. I told my rheumatologist what she said and he said"But look where you were 20mg, that's so much better to be at 4mg"
Well I'd love it if she could provide some links to such opinions because I still meet far too many patients whose doctors are threatening the use of methotrexate or whatever to get a patient off 2mg pred!!!She's absolutely right - but not enough have crawled out of their bunkers and dragged themselve up-to-date
It sounds similar to the HRT debate. Until recently, it was expected that one would use HRT for up to 5 years and then stop whereas it is now expected that some women may remain on HRT for the rest of their lives.
In HRT's favour, there are fewer potential long-term side effects than there are for steroids use. However, as I said with regard to HRT, I'd rather have a greater increased risk of dying five years earlier at some point in the future than the completely life-sapping reality of the menopause that I was experiencing. It is a matter of informed balancing of potential difficulties in the future with a more positive life in the present.
Absolutely! I gave up HRT when there was yet another scare story - and some months later the first signs of PMR appeared. Can't know whether they were linked of course - but I suspect another 15 years of HRT would have done less potential damage than 11 years of not so low dose pred. Not that I have much to complain about - and the HRT had laid a good basis for avoiding bisphosphonates
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