Leflunomide

[Alebeau]

I have no direction from a rheumatologist yet so I am curious about the procedure for weaning prednisone after two months of Leflunomide.

Currently at 8.5 MG prednisone and 20 MG Leflunomide.

Don't like the side effects of Leflunomide but continuing with the hope of reducing prednisone down to a so called safer level.

Or do I just stop prednisone altogether?

I will be seeing a new rheumatologist on January 14

Thanks

[PMRpro Ambassador]

No - you mustn't just stop the pred - your adrenal function has to get up and running and it only does that by lower doses of pred. And you are still at the top of the range where adrenal function is well suppressed - but as the pred dose goes down, adrenal function will be tickled into life again.

You just taper as you would without the leflunomide but if it works you will be able to taper unlike previously. One friend who used it said she actually felt the effect of the lef "kick in" and was then able to reduce the pred dose without PMR flares which she hadn't before, even with methotrexate.

[Alebeau in reply to PMRpro]

Thanks

This is what I thought and I am encouraged by your friend's experience.

I will continue with the pred reduction as I am now at the lowest dose so far in my 3+ year journey.

[powerwalk]

Good luck, let us know how it works for you.

[Jackoh]

Agree totally with PMRpro. I took the same dose of L. the same as you. I believe it may have attributed to my peripheral neuropathy so I stopped taking it after about 18 months/ 2 years. I have been able to reduce further without L. but using a very slow taper. This is because I personally find it very hard to taper. I don’t believe L. for me assisted in tapering. Let us know how you get on. 💐

[Alebeau in reply to Jackoh]

Thanks, that is good to know.

I will be on alert for any changes as I already have a problem with numbness in my right foot that I am seeking further advice on. Was told it was due to my spine but I did physio and still do but that numbness just won't go. I did injure that foot when I was in my 20s so may have damaged something. Hoping to see a specialist at some point.

[membership]

Hello ! I have GCA (diagnosed 2018) which was initially controlled by 60mg prednisolone. I tapered gradually to 10mg and then began to yo-yo when I tried to taper the prednisolone to a lower dose. My Rheumy prescribed leflunomide. It took about five months before I noticed any side effects - sensory disturbances in the right foot and ankle. These increased significantly and in August I tried (unsuccesfully) to see a GP, since they were unbearable; I contacted my Rheumy by e-mail and told her. I have a subluxation of L5/S1 which she thought was the mechanical cause of the problem. We agreed to differ, and I stopped taking the leflunomide. It took three months but the sensation gradually returned to normal and no sensory problem remains. I am now reducing from 6mg to 5mg (1 month, every third day [665]; 1 month alternate days [65] & 1 month 5mg) and all is very well... no problems at all.

[PMRpro Ambassador in reply to membership]

I was going to ask that - it is a not uncommon problem and probably scares me the most about leflunomide, that and the even more common GI effects!! I would hate to think the neuropathy persisted once you stop it!

[Alebeau in reply to membership]

Thanks for sharing your experience, you are the second one to reply with that problem.

I will be cautious as time goes by ND will mention this side effect (along with the others- weakness and dizziness, bowel issues) to my new rheumatologist.

[Kneeknit]

I wish I can help you! My experience with pred was so very fast and the actions I followed were the ones my Doctor gave me. I had being told to not stop pred suddenly because it would cause more damage to my body and I already had enough. Good luck!

[Alebeau in reply to Kneeknit]

Thank-you

[tangocharlie]

I've been on Leflunomide for 7 months now but I don't think it has had any effect as I am still unable to reduce steroids at all. As soon as I do I flare up again. I was told by my rheumatologist (who I trust and is an acknowledged PMR expert, but even she doesn't know much about Lef) that it takes at least 3-6 months for Lef to kick in, and there is no guarantee it will do anything. Is your inflammation totally under control? Only then should you try and reduce using an established method like Dead Slow Nearly Stop that you will find in other posts. As you will read over and over on this forum, the trick is to get to the lowest possible level of Pred that still manages to control the inflammation from PMR, so you tentatively and slowly reduce and see what happens. The theory is that the Lef should reduce inflammation so that you can reduce the steroids. See what the new rheumatologist says.

[PMRpro Ambassador in reply to tangocharlie]

I didn't think Lorna was on lef for that long before it worked for her - maybe you should ask her???

[Alebeau in reply to PMRpro]

I think leflunomide is working for me Day 2 of 8.5 ans no noticeable PMR symptoms

I am on month 4 of leflunomide

I will wait and see how it goes and I do get monthly blood work so that is my way of confirming that I'm on the right path.

Thanks as always for your valued input.

[Alebeau in reply to tangocharlie]

ThanksI will definitely talk to the rheumatologist about leflunomide and it's nasty side effects.

So far I was able to reduce to my lowest ever dose ever with no inflammation and it coincides with my 3+ months taking leflunomide.

Fingers crossed I hope it continues.

[PMRpro Ambassador in reply to Alebeau]

How bad are the side effects? I am considering another try - MTX didn't suit me at all and my hair fell out in chunks!!

[Alebeau in reply to PMRpro]

They are annoying but manageable. Weak/dizzy spells are sporadic and not severe enough to give up. The extra bathroom visits are simmering down somewhat so maybe I am over the worst part. It wasn't all that bad overall.

I will discuss these with my new rheumatologist on the 14th.

Physically I feel great for a 73 year old and am happy to finally reduce the pred to an all time low for me. Without Leflunomide I tried 3 times previous to go below 10 but failed due to the return of PMR pain and stiffness.

Hope this is sufficient info for you to make your decision.

[tangocharlie in reply to PMRpro]

At 10 mg no side effects really, when the dose was upped to 20 hideous constant diarrhea so had to go back to 10. I have had vertigo since summer which is a constant spinning and bobbing sensation and balance problems but don't think that is connected. I think it'd be worth you trying. I have managed to lose a bit of weight which is a bonus. I don't want to try MTX again so no idea what SM will suggest next. The only thing that ever worked well for me was the Depo medrone injections but I can't see her agreeing to me having them every 3 weeks indefinitely. I had such hopes Lef would work. Back to the old drawing board

[PMRpro Ambassador in reply to tangocharlie]

Not tried 15mg? That's what Lorna did second time round

[tangocharlie in reply to PMRpro]

Never thought of that, I'll give it a go

[tangocharlie in reply to Alebeau]

Wow that sounds promising, fingers are crossed for you!