Sorry about unfinished post. No dexterity, pressed wrong button. On routine appointment to Rheumi in June I asked about pain, numbness , muscle wasting etc in hands. He said unlikely to be related to my GCA. I was already unhappy with Leflunomide and said I was going to stop taking it. He had no interest in the hand problem and said he was not a neurologist.
Saw GP who looked concerned and promised to refer urgently to Neurology but obviously forgot about that for 3 weeks. When I saw the waiting lists I decided to go private (was really anxious about major deterioration in hand function).
Various initial tests, and I plucked up courage to mention Leflunomide without sounding as if I had been seeing Dr Google or was encroaching on his area of expertise. Neurologist said he had never heard of that cause of neuropathy but thank goodness and to his credit by my next visit and after more tests he had done his homework and cited Leflunomide as a 'possible and even probable cause', and that it was rare. Hands still pretty bad but tiny improvement, I hope I get good function back but Neurologist said nerve damage is very slow to repair.
I post this to alert others to possibility of nerve issues with Leflunomide. I wish I had stopped it sooner.
Funny the consultants weren't aware of the mention of nerve issues on the packet details...
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which is the story of a long term PMR patient in Scotland who also developed neuropathy on leflunomide - but luckily had a competent rheumy. She stopped the leflunomide then and it resolved, not sure how long it took but leflunomide sticks in the body for quite a while, there is a wash-out medication which can be used in bad cases and I would talk to your GP about it as it may help the recovery.
She had an immediate massive flare of the PMR and was back to 20mg pred but has since restarted the leflonomide at a much lowver dose which wasn't quite enough and settled in the middle plus pred which I think is where she is at present.
I really am appalled at the concept of specialists who do not swot up on the adverse effects of the drugs they hand out to patients - apart from anything else, it means that because of their ignorance they are experimenting on patients and the patients are not going into using the drugs on an informed basis, Personally, leflunomide scares me witless and I would be expecting close monitoring by someone who knows what they are doing if I ever did try it.
Had you found us sooner and mentioned it here - you would have been told practically in the same breath. It worries me that patients know more than so many doctors.
It is so worrying that we are hearing of such incompetence so often!....Our health and maybe at some point pur lives may be at stake!....they are arrogant enough to think they know it all, until they are challenged in some way....by us patients!.....worries me too!
I don't know if this would be of any help in speeding up the recovery process, but my husband has neuropathy and had some physio (referred by GP). He says neuropathy had affected his balance, and the physio helps. I believe his exercises are to improve muscular strength, and perhaps there are exercises you could use to help your hands? A physio would know what muscles need the help because sometimes it's a question of rebalancing muscles, like focusing on smaller muscles that aren't helped when exercising larger ones? Hubby had two or three sessions and now just does the exercises on his own. For a different hand problem many years ago a physiotherapist showed me in one session what exercises and techniques I needed to help and that was all that was needed.
Yes I had Leflunomide for about 18 months as a steroid sparer. During this time I developed neuropathy in both lower legs and requested to come off it. I wasn’t sure if the Leflunomide had caused it but I had my strong suspicions. 💐
It’s disturbing when the consultants are not aware of what the package inserts say. I had the same experience. I developed Achilles tendinitis after I had been on Leflunomide for a couple of months. I asked my rheumatologist and he said it wasn’t the Leflunomide as it was extremely rare, one in a million. I sent him the insert copied above, which said common, up to one in ten. I hope I am interpreting that right. No reply from the rheumatologist. I am staying on the Leflunomide because I have to get off Pred. The tendinitis is gradually improving.
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