Leflunomide

[donnabrain]

My rheumatologist is thinking of adding this to my meds.Reading up on it, it's a bit scary

Anyone here already on it?

[PMRpro]

There are several people over the PMRGCAuk forum who have been on it. It can have unpleasant side effects but it can also be fine. Everyone is different, Bottom line is - if it works and you have acceptable side effects, great. We say the same about it and methotrexate - you have to try to find out.

[HighMaintenance]

Hi,

Yes, I take Leflunomide. It’s been a game changer for me. I think o felt a bit sick for the first week but otherwise absolutely no side effects. I’d previously tried Methotrexate which didn’t agree with me despite trying tablets and injections. I was switched to Azathioprine which was great for a few months before making me very ill. Next came Leflunomide- so far so good. Tbh it’s a case of trying and seeing how it works for you. Good luck x

[Daisydots]

hi I have been on this for around 5 years, I suffer mainly from aches and pains in my joints and it has worked really well for me. The side effects for me have been loose bowl movements and I did have to get my dose lowered, and after a couple of months it got better, all though not the same as before! (Sorry for all the toilet talk) but it has made me feel so much better it’s been worth that side effect for me. I have to have regular blood tests once every 3 months, but have had no issues, and my consultant has said if they do find anything on the bloods you stop the medication and it would reverse that, but it’s key to have them taken regularly. Hope that helps. I couldn’t take methotrexate as it made me quite sick. Best of luck xx

[Bakbre]

Hi there

After being diagnosed 2004 and being put onto several different medications, none of which worked for one reason or another, I was finally put onto Lefludomide. This worked for me and I now have been on it about 5 years with no problems at all.

I find that most of the medication used to treat Lupus and its many symptoms/illnesses, are scary when you read the many side effects etc. I now just think to myself if, instead of feeling extremely ill all the time it makes me feel well & human again, I am going to take it. I don’t mean to sound flippant but I got to the stage that I would have taken anything if it made feel well and took away my pain.

My advice would be to go ahead and take it and if it works, great, fantastic, don’t worry about the side affects because you might not get them. Good luck.

[SjogrensinTexas]

I have been on Lefunomide for about two years. Helps with inflammation and fatigue. I am on a low dose (10 mg) and that seems to do fine. When we tried to move up once it was pretty unpleasant (diarrhea) so we elected to keep the dose at 10 mg. I say try it but do a low dose and see what you can tolerate. Side effects stop immediately and don’t linger. I take mine at night before bed.

[cakerbaker]

Hi Donna

I am on Leflunomide and like you I read the paperwork and scared myself to death. I eventually gave it a go and it was a total game changer. I went from walking about 20 yards to much more. The pain in my hip was much less too. I am currently increasing to 20mg but developed thrush in my mouth. Only problems I had were initially nausea for a few weeks on and off and an occasional upset bowel. Otherwise I am happy I took the plunge as it were. Obviously everyone is different so see how you go.

I hope it makes you feel better.

[donnabrain in reply to cakerbaker]

Thank you