Leflunomide

[SurreyFlower]

I’ve posted this a reply to head girl but thought I would also add as a separate post

saw Dr Hughes yesterday for a catch up.

I was diagnosed with PMR Dec 2019 and have been having difficulties decreasing the Prednisolone dose. Hence Dr Hughes suggested adding in 20mg of Leflunomide which I have been taking since the beginning of October . I feel it has been starting to help ,coming down from 17.5 Prednisolone-16 and now trying 15 BUT I have started to get tingling in both my feet and a tight feeling around the ankle ! Dr Hughes said to keep a “close eye” on this as it could be peripheral neuropathy which is concerning. The feet aren’t numb and no pain as such .

I’m wondering how others had peripheral neuropathy diagnosed and if reducing to 10mg of Leflunomide would reduce the possibility.

[DorsetLady PMRGCAuk volunteer]

This is copy of my reply to another post - re steroid sparing drugs

I had GCA for 6 years, but only 4.5 on Prednisolone - long story, see profile if interested.

Apart from seeing rheumy twice, at 9 & 10 months into treatment, I was overseen by 2 different GPs. One was as naïve about GCA as me at outset so we learnt together, 2nd one much more knowledgeable - it was never suggested by either that I take a steroid sparing drug.

Maybe because I never had any issues in tapering (slowly and sensibly), or maybe because they weren't the "experts" they didn't view long-term steroid use as a failure by them and feel the need to "get me off the steroids ASAP".

If you've only had PMR for a year, what's the rush to add in another drug with another set of side effects.

[SurreyFlower in reply to DorsetLady]

Thanks DorsetLady. No rush I agree but the issue was I could not get good pain relief with Pred even at a high dose

[DorsetLady PMRGCAuk volunteer in reply to SurreyFlower]

Not sure that Leflunomide with give relief either with PMR - but I suppose you can only try and see.

good luck

[JGBH in reply to DorsetLady]

I remember seeing a link recommending a slow and sensible manner of reducing steroids but cannot find it now. I wonder whether you wouldn’t mind giving me this link? Have been on 10 mg of prednisolone for ages now and would like to try reducing further. Am still recovering from shingles though, so would it be ok to start reducing now?

[DorsetLady PMRGCAuk volunteer in reply to JGBH]

This covers all of them mentioned on here - healthunlocked.com/pmrgcauk...

I would be inclined to wait until you have completely recovered from shingles before you start.

[JGBH in reply to DorsetLady]

Thank you so much. Have now made a note of the link. Yes, I will wait until all the rash and itchiness have gone... a long time though starting my 8th week. Can’t wait till it is over. Hope the knee is improving.

[PMRpro Ambassador]

A senior member of the Scottish charity had a very good result with leflunomide (she says she felt it "kick in") until she developed peripheral neuropathy and stopped the leflunomide which of course resulted in a return of the PMR symptoms in all their glory. She later decided to try 10mg but I gather it wasn't good enough so she went up to 15mg which seemed OK. However, last I heard she had had a big flare and was back at 20mg pred.

The neuropathy is the leflunomide adverse effect that scares me most - she had tremor too. I do well on just pred - although I cannot reduce the dose I am pretty much pain-free.

Did Rod want to add the leflunomide on the grounds it does seem to work to reduce the dose in some PMR or because he wonders if there is something else going on if you didn't get really good pain relief with pred?

[SurreyFlower in reply to PMRpro]

He wanted to try it because I did not seem able to taper successfully from 17.5 and achieve a comfortable pain level even though I was going very slowly.

[SurreyFlower]

Yes it is the first steroid sparing drug I have tried. I think Dr Hughes tends to favour Leflunomide.

[SurreyFlower]

Thank you

[Jackoh]

Yes I am under Rod Hughes and he does favour Leflunomide over methotrexate. I was “ stuck” at about 18mg/17.5mg when I went on it. I was taking 20 mg Leflunomide and didn’t appear to have any problems but to be honest it didn’t really help my GCAPMR. I found that I was more susceptible to infections which necessitated me increasing the pred when I had an infection so I didn’t really manage to taper very far. I also , while on the Leflunomide developed peripheral neuropathy in one foot. Later after about 18 months I developed peripheral neuropathy in the other lower leg which necessitated me taking Amitriptyline. It was at this point Dr Hughes and I agreed that I should stop taking it.

[SurreyFlower in reply to Jackoh]

Thank you that’s very helpful.

I’m increasingly of the opinion that I am developing peripheral neuropathy as I’ve been kept awake by constant pins and needles and some numbness in my feet. 😕.

I will try to speak with Rod Hughes today and discuss a way forward. How are you doing now? Have you managed a slow taper on the steroids alone ?

[Jackoh]

Hi well up to last month I was doing very well and managed to get to 9.5mg. I was about to taper to 9 mg using the DSNSmethod when I caught a head cold from my husband. After a while I could feel my inflammation levels rising so I put my steroids up to 13 mg for a week and then on Saturday I came down to 10 mg, where I last felt stable. This was with Dr Hughes agreement. I must admit now though I don’t feel 10 mg is holding it but giving it just a few more days just to check that it isn’t withdrawal. Not sure where I go from here! When you say that you will speak to Dr Hughes are you private or do you communicate by email? 💐

[SurreyFlower in reply to Jackoh]

Hi Jackoh I am fortunate that I have health insurance and go private. I will email/ phone his secretary

[Jackoh]

Yes I initially went private and then transferred to his NHS list. I must admit that he was just as attentive and helpful on both. I usually email him. 💐

[SurreyFlower in reply to Jackoh]

Thanks. Yes he is very caring . I’ve decided to stay private at present because of his comments about not being able to see patients at St Peter’s .BTW have sent you a private message

[Louisa1840]

I too had that tight feeling on the ankles and suspected beginning of peripheral neuropathy. I stopped the Leflunomide.

I am just going to let the PMR run its course. It will go when it's ready (if it does). Meanwhile I am trying to eat a healthy diet and exercise when my extreme fatigue allows. .....

Three and a half years in and on 10 mgs.

[SurreyFlower in reply to Louisa1840]

Thank you that’s very helpful

[Viv54]

Hi, yes i have peripheral neuropathy I have had it for years , Nothing to do with my PMR. I have tingling all the time and my feet feel as if they are in boiling water. My Dr thinks its from a back problem.There is a test you can have, mine was positive. Mine has never gone away , i take Amytriptlene for it . Im used to it now , but yes its not nice. Hope this helps.Best wishes Viv

[SurreyFlower in reply to Viv54]

Thanks . I will ask my Rheumatologist if he thinks it’s worth me getting tested .

[Skysey]

This is really interesting as I have had pins and needles in my right ankle and foot which comes and goes since being on Leflumonide. No other obvious side effects though.

[SurreyFlower in reply to Skysey]

Thank you

[Marilyn1959]

Does this experience put the cat amongst the pigeons?

I am not on, nor ever taken Leflumonide, but have had pins and needles in hands and feet that started a few months after commencing pred. Numbness in hands and feet occurs if in same position for too long. Sometimes cramp in / or freezing of foot occurs that makes me feel as though I might snap the bone in the affected foot if I move it the wrong way. For a few seconds I am unable to put weight on the foot.

I had neuropathy tests about 18 months ago which came back fine. So I put it down to pred.

[SurreyFlower in reply to Marilyn1959]

Thank you. for recounting your experience. Imust admit I did have slight pins and needles in one foot before starting the leflunomide but it is much more pronounced now , both feet and some numbness . It’s never occurred before when resting until recently.

[PMRpro Ambassador in reply to Marilyn1959]

Pred is known to also cause neuropathy and those symptoms

[SurreyFlower in reply to PMRpro]

So... difficult to assess what could be causing the pins and needles and numbness. Prednisolone is the gift that keeps on giving ! 😏🙃

Thanks for your help as always