I was diagnosed in2016 with GCA and PMR. I went into remossion and have been off Pre sine June 2021, One month ago I noticed a return of the symptoms and went to a walk in medical pracrice (it takes 2-3 weeks to see my regular doctor) CRP was 12.4 so Doctor said no problem, thats normal. Symptoms worsened each day and after a week went to a different practice and had another blood test. This Doctor could clearly see I wasn't well and gave me a prescription for Pred 26mg, 5mg and 1mg tablets and said I hope you know what dose to take because I don't but I will ring through the bloods to give you a better idea/
This was Thursday just gone and I still haven't heard from them. I rang the practice yesterday afternoon and asked for CRP and ESR result but doctor was busy so she would leave a message to ring me on Monday.
My question is what should I take and for how long/ Does anyone know? I took 25mgs on thursday friday and today but what next? This flare is nothing like the original onset where my CRP was 90.5. Hoping someone is experienced in this.
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julianne3
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is one of the best proven approaches, may be old but the lady who wrote it is now a specialist GCA consultant in a hospital near London UK and still uses it - because it works.
Apart from being withering about rapid reduction and rational about side-effects. Could it possibly be the case that this paper, inconceivable though of course it is in the pure clear air of evidence-based academic medicine, has been somewhat buried?
Nonetheless, one for our haversacks, I think: Be prepared! John Kirwan, Prof of Rheumatology at Bristol, is not altogether easy to dismiss with a light laugh. Well of course, as you know, Doctor, Professor Kirwan has posited there may be a net overall benefit to being on Prednisolone. Personally I follow his tapering regime. It would almost be worth being messed about to see their faces.
However, there are no clinical trials showing the best glucocorticoid dosing regimen – a lack that should be addressed
Has it been or are they making it up as they go along?
This is qualified later, I think, 'the best' being that which avoids relapse, and the subtext being that those who insist on rapid reduction don't care about relapse.
Rate of steroid tapering at more than 1 mg/month is a clear predictor of relapse.14,39 Higher relapse rates seem associated with too high a dose of glucocorticoids initially and/or with too rapid a reduction in treatment thereafter.8,36,40–44 Some controlled trials of treatment have shown disappointing results because of a similar rapid reduction in dose.
The entire paragraph beginning 'The drive to keep glucocorticoid dose to a minimum is the fear of side-effects, particularly cardiovascular and fracture risk...
Oh yes - still making it up as they go along. Which is fine if the PATIENT is the driver and their symptoms and responses inform the tapering decisions since everyone is different. And that I think is what Christian Dejaco is saying in the T2T paper
He says a lot that I and others in the PMRGCAuk world have been saying for the last 10+ years - conclusions we arrived at from observation and personal experience. I started the way I meant to go on: I gatecrashed a NE charity launch (I did ask the boss of the charity if I could come) and asked the top medical representative where/how peripheral vasculitis fitted in to PMR. The expression in his face made me suspect he hadn't thought of it. Nor that GCA symptoms can appear alongside PMR briefly and then it burn out, aborting the process. Now they are talking about that in the stratification discussion.
I too am just at the beginning of 2nd time PMR. And yes it is different, in fact this time my bloods didn't show any raised inflammatory markers. Not sure the doc actually believed me! But all the classic symptoms were there. Bi lateral pains in neck, shoulders and arms. Couldn't raise arms so undressing a problem. Very hard to get up out of bed. Pains not responding to paracetamol or ibuprofen. Doc did agree to prescribe after mentioning all this to her. I started on 12.5 mg pred. A dose I suspected might work. Which it did. Like last time pain went in 4 hours. Reviewing situation with her on 27th June.
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