Wondering about Leflunomide side effects

[Linny3]

Hi Everyone

I started Leflunomide a week ago. I thought all was going well until yesterday. I hurt from head to toe and today is even worse, plus I have not slept in 3 nights as I am in so much pain.

I am thinking this pain is from the med. and not pmr. I was wondering if anyone else has experienced joint and muscle pain from this drug. If so how long did it last?

I am taking it as a dmard as I am on 15mg of pred. for 3years and 6 months.

Thanks

[PMRpro Ambassador]

Joint and muscle pain and stiffness is listed as a less common adverse effect. It isn't one I have heard mentioned by the few people with PMR who I know of on leflunomide.

This

rxlist.com/arava-side-effec...

says muscle cramps and pain should be reported to your doctor.

Leflunomide must build up its presence in the body so adverse effects may not appear immediately. In your place I would be stopping to see if it improves - to at least provide some evidence. It may take a few days.

[Linny3 in reply to PMRpro]

Thanks for the response. That is exactly what I was thinking. If I don't take any for next 3 days then when I call Dr. maybe I will be able to tell what is going on. I was really hopeing this was going to work.

[Linny3]

I am sorry that it didn't help. Are you saying the infections were caused by the two drugs?

[Odosmum]

I have taken leflunomide for many years and have not had anything like you describe. What dose are you taking? I do know that there used to be a protocol to start the drug with high doses before reducing to a 'normal' dose so I wonder if this happened to you. Are you having weekly blood tests?

[Linny3 in reply to Odosmum]

Only taking 20 mg daily. I have an online app't wed. to see what the dr. thinks

[Amkoffee]

When you say infections... What kind of infection? Like lung or sores or what?

[Odosmum]

That's the dose I've taken from the outset. I have taken it for so many years - maybe 15 or so? When I started the pharmacist had to order it specially because I was his first and only customer for it! It works really well for me - I see what Daddy Cue was saying about skin infections. That isn't something I've experienced. My only issue is that occasionally I have a chest infection (usually bronchitis) after a bad cold and that needs antibiotics to clear it. Leflunomide has to stop then for the duration of the course and then I'm back to normal. Side effects are mostly diarrhoea and urgency - not every day and usually after eating a hot lunch. Why, I have no idea. Luckily, I take paracetamol and codeine (500/30) daily and this stops the worst of it. I forget all about it until the next time it happens.

Leflunomide has been a life changer for me. Before I started taking it, I was facing being a wheelchair user because my ankles were so painful I could only walk a very short distance, even with sticks. Now, so many years on, I am quite capable of walking a mile most days and I don't have particularly painful joints.

Hope this helps a bit, Linny.

[Linny3 in reply to Odosmum]

You are so lucky that it works so well for you. There are always side effects to these meds.

but some are just too much to bear.

Continued good health

[Odosmum]

Thank you