tapering too rapidly after synovitis?: I have now... - PMRGCAuk

PMRGCAuk

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tapering too rapidly after synovitis?

humlies profile image
9 Replies

I have now had PMR for about 3 1/2 years; several months ago my hands became very painful, and I was diagnosed eventually with acute synovitis. I was told that if I did not go onto high doses of Pred. I might lose the use of my hands, so I agreed. This is the regime I am on:

20 mg pred for 2 weeks, 15 for 2 weeks, 10 for 2 weeks, 5 for 2 weeks; then presumably back to the 2 1/2 mg that I was on before. The rheumy also wants me to go on to Methotrexate, which I am reluctant to do since it is yet another drug, so I am quite pleased that the preliminaries - chest x-ray etc are taking so long to sort out.

I know from this wonderful forum that it is possible to decrease doses after a flare more rapidly than if I were to be at the beginning of the PMR journey; however do you think this advice is a bit too rapid? I am now in the 3 rd week, and am actually now taking 10mg one day, 15 the next, with the aim of decreasing to 10 by the end of this week.

The good thing - I am now completely pain free for the first time. It is an extraordinary feeling....

Thank you all so much for your support.

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9 Replies
PMRpro profile image
PMRproAmbassador

I too would be reluctant to go onto MTX. But the taper sounds reasonably OK - all you can do is try it. If it was acute synovitis then it should have got rid of the inflammation unless it was actually the PMR underlying it in which case it might build up again. Only time will tell.

humlies profile image
humlies in reply toPMRpro

Thank you PMR. So shall I stick to going down 15 to 10 then 10 to 5 in one go?

PMRpro profile image
PMRproAmbassador in reply tohumlies

That is the taper I was given when I first went on pred - the rheumy wasn't convinced it was PMR but he did give me 6 weeks of pred to get me through a trip to the USA. It was 2 weeks each 15/10/5 and stop and I had no problems at all. You haven't been on pred long enough to upset the adrenals any more than they were so I would try what he suggests. You can always go back up a bit if it doesn't work but it would be better not to do so,

humlies profile image
humlies in reply toPMRpro

Ah, thank you PMRpro - that's very helpful . What a mine of information you are.

PuttyPenguin profile image
PuttyPenguin in reply toPMRpro

Just out of curiosity, Madame Ambassador, could you please tell me why you are/would be reluctant to go onto MTX? Many thanks

PMRpro profile image
PMRproAmbassador in reply toPuttyPenguin

If someone has reached 3mg without MTX it is a case of balancing the potential benefits against the downsides. There is no guarantee that MTX will get someone with PMR off pred altogether. It does work brilliantly for a small cohort of patients but for a lot more it just reduces the need for pred by a small amount and the patient still needs some pred. MTX itself is a powerful drug with potential adverse effects and for some patients it can be very unpleasant, If a patient is at 3mg pred and doing well, the question is as to whether adding MTX would be a positive move. If the patient only needed MTX possibly but if they remain on both, I don't think it is at that level of pred.

I have been on MTX - but the fatigue was horrendous. After a month I had half a day just before the next dose where I felt reasonably well. It also led to me developing side effects that are ascribed to pred that I had never had on pred alone! If you can take MTX without side effects and are at a higher dose of pred then maybe it is worth trialing. But not at a low dose.

PuttyPenguin profile image
PuttyPenguin in reply toPMRpro

Many thanks!

humlies profile image
humlies in reply toPMRpro

My rheumy also wants me to go onto hydrochloroquine as well as MTX! what do you think?

PMRpro profile image
PMRproAmbassador in reply tohumlies

I wouldn't - but I suppose you can try. I'd like to hear their evidence to justify it.

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