Advice on taking Leflunomide

Hi I’m new to the forum but have reading all your posts and do not feel alone in this awful condition of PMR. I was diagnosed October 2021 at the age of 60. I have had 3 relapses since them and after reading your posts feel this could be due to my prednisone being reduced too quickly. My consultant is now wanting to start me on Leflunomide. Having done my research I am reluctant to want to take it and wondered if anyone else is taking this medication and offer and advice.

[winfong]

I'm on it. What's your reluctance?

[Hidden in reply to winfong]

Hi I’m not so much reluctant but not having known anyone on it want to know others experiences. I have a lot of faith in my consultant but 2 weekly blood tests to check liver functions was a bit daunting. Im told I will take it alongside my prednisone. Im willing to try anything to get the PMR under control so really just want to know if there are any negative to taking Lef. Thank you

[PMRpro Ambassador]

Hi and welcome.

One of the ladies who does duty on the helpline in Scotland has been on it very successfully, albeit with a couple of hiccups. She isn't a regular on the forum but maybe if you get no other responses it might be possible to contact her.

[Hidden in reply to PMRpro]

Thank you for replying

[Baileyw06]

I have been taking it 3x a week and get blood tests once a month. So far I haven’t had any adverse side effects. I have been taking it with plaaquenil and 6 mg of prednisone since March.I have a lot less pain with the combination but still have fatigue.

[Hidden in reply to Baileyw06]

Thank you for replying what you have said is very helpful.

[123-go]

Hello, Marshfarm. I have asymptomatic Aortitis and am taking 10mg leflunomide daily to help manage the inflammation along with very low dose Prednisolone-currently on 1.5mg/1mg/1mg 1/mg on a 4-day cycle. I've had no side effects apart from tingling sensations in my toes but this doesn't appear to be a cause for concern. I have 2-monthly blood tests and a close eye is kept on liver function.

I've just looked at your profile. You are in no way too young at 60 to have PMR! Three relapses in the eight months you've been taking Prednisolone indicates that your medication hasn't been managed properly which has caused your relapses. Please tell us the dose you started on and how long you stayed there before your first reduction, what that reduction was and your following doses and when flares occurred. It would be a good idea to add this information to your profile to give us a clearer picture of your 'journey' so far.

It's all very confusing and at eight months since diagnosis this is not unusual. Stick with us and you will get lots of support.

[Jackoh]

Yes I’ve been on Leflunomide for about 18 months. I didn’t get any side effects on 20 mg but did develop peripheral neuropathy in both legs. It wasn’t sure if this was really attributed to the Leflunomide but I stopped taking it just in case. For some it has been very helpful to reduce the dose of pred. I didn’t find that for myself. It is, I think, a case of sucking it and see. It is quite easy to stop using it. 💐

[43tripandskip]

I have been taking Leflunomide for 2 years. It helped get me off Pred. The big side effect for me was that I had loose stools and I asked my Rheumy if I could stop using Leflunomide as I felt much better. In the six months since I stopped, I have had occasional symptoms of PMR such as stiffness in the morning and having to take Ibuprofen once or twice so that I could function a bit better. I have not felt ill so I can only assume that the Leflunomide has done what it was meant to do.

[Bennej30]

Hi, I am on leflunomide and have sucesssfuly come off prednisalone since February. I was on methotrexate first which i didnt get on with. I have been on leflunomide for a couple of years, I had a few stomach issues which took a while to settle and since being off pred seems to have improved even more so may have been the combination of the two medications. In my experience I would say worth taking if you can come of the pred. Good luck

[PMRpro Ambassador]

Just to remind anyone who is thinking of replying - this poster has left the forum so won't be notified of your reply. That is why it now says Hidden rather than a user name.

[tangocharlie]

I tried it, it didn't do anything at all for me sadly, but everyone is different. Negatives were it was hard on the guts ie bad diarrhea and possibly, but unproven to be definitely linked, though listed as a possible side-effect, a bit of peripheral neuropathy (tingling and numbness in hands). Methotrexate is more commonly tried for PMR, again it works for some and not for others.