Life after Leflunomide

[43tripandskip]

It's time to report back on how I got off Pred and Leflunomide and am now happily running through fields and climbing mountains. Well, I'm not.

Under my rheumy's guidance I tapered off both medications and everything went well for March. Then the stiffening and aches re-appeared. I was in the ridiculous situation of taking doses of Pred and saying, "I need a bath. How many Pred would guarantee I get out of the bath?" Or, "The bedrooms need vacuuming, how many Pred is that equivalent to?" Stupid questions, you'll agree, but I'll blame Covid lockdown for my state of mind.

Anyway, I've been put back on Leflunomide for 6 months with regular attendance every 3 months with my rheumy. I'm slowly tapering off Pred over the next few months so hopefully, everything will work out well. Disappointed? Yes, but it's only 6 months. Wonderful things can happen in that time....a new Covid vaccine.....no more lock-downs...Spring just on the horizon. Keep well everybody!!

[Maisiek]

Thanks for this: I was being considered for a Leflunomide trial before lockdown, so it’s good to have feedback: does it have any side effects of its own apart from the steroids?

[43tripandskip in reply to Maisiek]

Reading the response from other people on this site who were put on Leflunomide, some had unpleasant side effects. Fortunately, I didn't have any nasties. In fact,it took over the Pred and I felt a lot better (I'd had a particularly bad flare and was referred by my GP. ) Even now, I've only been back on Leflunomide for a few days, but it seems to have taken away the aches. The medical profession would probably say that I couldn't feel any immediate effects as Leflunomide takes several months to take effect. Be that as it may, I'm pleased to be free from pain. Perhaps you could look up previous replies on this site to get feedback on side effects. I hope everything works out for you.

[123-go in reply to Maisiek]

Hi MaiseK. I've been searching for info on Leflunomide and came across your question. Having refused alendronic acid my Rheumy wants me to take Leflunomide. I really don't want to put anything in my body that may cause problems. I've been on 5mg pred and calci-d since lockdown and have no PMR pain. I was diagnosed with GCA last Christmas as a result of sixth nerve palsy. The double vision has improved greatly but I'm well overdue for an appointment at the eye clinic for a possible change of Fresnel prism.

I'm wondering why I need Leflunomide because as far as I can make out it's primarily prescribed for the pain of Rheumatoid Arthritis.

[PMRpro Ambassador in reply to 123-go]

Leflunomide is one of the drugs that there is some evidence for that it can improve pred dose with PMR. Prof Dasgupta did a study some years ago, it was claimed 21 out of 23 (I think) patients went into remission though I know one patient dropped out very quickly because of the side effects and others said they were awful.

If you want a case history from someone for whom it worked contact Lorna Neill at the Scottish PMRGCA charity (totally separate from this one). She had had little success with methotrexate and tried leflunomide. She says she felt it "kick in" and felt better than she had since PMR. Unfortunately she developed peripheral neuropathy as the only adverse effect and had to stop - back to 15mg pred within weeks - but restarted at a lower dose. 10mg leflunomide wasn't quite enough, 15mg was. Not sure of her current status though.

On the other hand - if I were at 5mg pred I would be very reluctant to try any of the so-called steroid sparers. To be at 5mg after GCA last Christmas is a mind-bogglingly fast reduction - no-one should expect more.

[123-go in reply to PMRpro]

I totally agree with you that steroid sparing drugs at 5g pred seem unnecessary. I am with the 'Prof' by the way and had a telephone consultation with him last Thursday during which he spoke about Leflunomide at some time. We also talked about reducing pred ...5mg, 2.5, 2.5 for a month then 5, 2.5,2.5 for another month and see how it goes which I agreed to.

Thank you for your helpful reply. 🙂

[Maisiek in reply to 123-go]

Thank you so much for taking the trouble to reply. I was under the impression they were trialling Leflunomide as something new , so it’s good to have feedback: maybe they think it’s preferable to steroids ? It’s all on hold at the mo because of Covid anyway. Stay well .

[PMRpro Ambassador in reply to Maisiek]

pubmed.ncbi.nlm.nih.gov/228...

is the Abstract, not sure if there is a full text available to us.

acrabstracts.org/abstract/l...

is a report of a retrospective study (they looked at past patients).

There is a study ongoing in The Netherlands which obviously has been slowed down by Covid - Elizabeth Brouwer said a few weeks ago they had some patients but my criticism was that so far they have recruited equal numbers of men and women and we know that men are totally different!

clinicaltrials.gov/ct2/show...

The concept isn't new - but there wasn't enough evidence for it to be included in the 2015 Recommendations. Some patients find it, like methotrexate, a very harsh drug.

[DorsetLady PMRGCAuk volunteer]

, "I need a bath. How many Pred would guarantee I get out of the bath?" Or, "The bedrooms need vacuuming, how many Pred is that equivalent to?" Stupid questions, you'll agree,

No sillier than how many spoons?

[43tripandskip in reply to DorsetLady]

Thank you. I did reply to you earlier but it must have vanished into the ether. Thanks you for your thoughts, much appreciated

[DorsetLady PMRGCAuk volunteer in reply to 43tripandskip]

Must have have got scooped up by a spoon!