Hi everyone haven’t posted in a long time, had pmr for 31/2 years taking steroids, managed to get down to 5mg 1year ago while taking 10 mg Leflunomide, as soon as my Rheumy put me on 20mg Leflunomide all my swelling and pain disappeared and managed to stop taking steroids 2months ago, inflammation has only raised slightly CPR 4 and ESR 24, started having slight stiffness in my legs,ankles,knees and feet but the worst stiffness is in my fingers, can’t undo pull can rings, clipping the lead on the dog or using a can opener had to buy an electric one now, Rheumy nurse thinks it’s to do with pmr as it’s not rheumatoid arthritis they are not swollen or hot, has anybody else with pmr suffered with really stiff finger joints especially in the mornings,
Valrene
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valrene
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Yes, I do suffer from stiff finger joints, not necessarily in the mornings. Not as bad as you, but definitely there. I've had PMR for as good as four years, and now down to 2.5mg a day. My wrists are also quite stiff.
I have put it down to the PMR, as when I had a small increase in pred about a year ago, it did miraculously clear up for a while.
Interesting to hear your comments, yes I wake up with left hand very stiff and can't open it fully until about an hour and thumb really painful, I find that I cant push a button with the thumb because it's just too painful.
What I did find that I accidently stopped taking my calcium/vitD tablets and the hand recovered from the morning stiffness. I re-checked this by taking calcium again and the stiffness returned but the pain in the thumb continues. I have had PME for 4 years and am on 3mg of pred and have been for some months. Will try to reduce in the new year. Doctor doesn't know what the problem is, he just said rub some voltarol on the thumb. I think it needs a steroid injection like the do for trigger finger. I shall pursue that thought when the voltarol doesn't work. I hasn't worked yet and I don't think it will.
N.B. Doctor seems a bit clueless.
Pete
• in reply to
Sorry, should have said, I've had PMR not PME, whatever next you might declare.
When I first got PMR in the summer, my hands, arms & shoulders were sore & stiff especially in the mornings. I had to use 2 hands to hold a cup; I couldn't do up buttons or zips; took me about 2 hours to get dressed in the mornings. The pain & stiffness went within a couple of days of starting pred and they have never come back... touch wood! (now on 5mg pred)
That is really interesting about the calcium and vit D I stopped taking those about 9 months ago so it isn’t that, when pmr first diagnosed had stiffness other places but not my fingers xxx
Sorry MhairiP that should of been for the comment before yours about vitamin D, all of your symptoms sound just like mine, now I’m not on pred did wonder if symptoms are returning as your went away when you started pred.
I was just the same. I bought a counter-top halogen oven because I couldn't reach down to open the oven door. At the same time I couldn't reach up to a high cupboard! As soon as I took my first dose of pred, the pain and stiffness just went. I'm now at 10 mg and I dread that it might come back some day...
Your story is almost identical to one of the Scottish charity's ladies. She got to a lower dose of pred with methotrexate but never felt well. Eventually they decided to try leflunomide - and she too felt it kick in after a couple of months with a really good result at 20mg. She was able to stop the pred, reducing from about 7mg to zero after about 8 months. The next stage was to reduce the leflunomide but over a much longer period. Unfortunately she developed a neuropathy due to the leflunomide, quite a severe tremor, and it was felt she should stop the leflunomide. Within a couple of months the PMR was back and she was back to 15mg pred. She was about to try 10mg leflunomide to see if that is enough to make the difference and reduce the side effects.
I had a lot of hand problems with PMR - went with pred and have never come back except niggles at the start of a flare (which isn't allowed to develop).
Thank you PMRpro for your reply, Rheumy did say to stay on 20mg Leflunomide for the next year and see how things go if all well may reduce to 10mg perhaps with the view to stay on it the rest of my life, that I really need to think about. Please could you explain about the neuropathy due to Leflunomide and the severe tremor the other lady had.
It is reversible obviously - quickly if they use the wash-out technique the letter described, but her problems also improved with time. Sometimes neuropathy causes tremor - but not always.
I suffer dreadfully with stiff fingers, sore wrists. Through the summer whilst on 5 mg I was fine. Beginning of October starting a flare, the first thing I noticed was my fingers hurt in the mornings. I went up to 10 mg for a few days and now at 7mg but not totally pain free. Shoulders and hands hurt on waking but get better through the day, I take paracetamol also.
I have also had physio at the hospital for my hands. My rheumy appointment was cancelled in October until February. I have rung twice and have now been given an appointment the first week in the new year. Hopefully he can advise me on my pred dosage!
I did suffer terribly from stiff fingers while the PMR was in full flow - they disappeared once the Pred started doing its job - the only memory of it is, occasionally, very briefly, in the morning. But when they were stiff and painful, they were mightily swollen and extraordinarily hot. (I am on my third month of Pred started on 20mg - have tapered to 15mg per day - reducing again in a couple of weeks.)
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Leflunomide and PMR
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