leflunomide (Arava) help

kristoff

Hi everyone

I have had RA for about 12 years and mainly get flares in my knees, over the last 12 years my RA has been controlled quite well with knee infusions and steroids putting it into remission for about 18 months at a time until now.

In February I started getting a flare and had my knee infusion and steroid injection which just made it worse so my rheumatologist done it a second time after only 4 weeks but still never worked :-(
My job is a community carer so is a very physical and demanding job and ended up with 9 weeks off sick and went back to work on June 1st which is now a daily struggle.
my rheumatologist started me on leflunomide on the 1st July (6 weeks now) saying this should work as in the past I couldn't manage methotrexate or salphsalazine due to side effects.
My meds now consists of naproxen, codeine, paracetamol, prednisolone, meprodec, leflunomide 10mg, propranolol, amlodipine.
6 weeks ago I had a intermuscular steroid injection which helped for about about a week so then they gave me a second shot which also only helped for about a week so am now on the prednisolone.
Over the last 4 weeks my flare has got considerably worse and now have swelling in both wrists and both knees, I have been on antibiotics for a chest infection and have now got diarrhea which I have been told is common when taking leflunomide and just feel like rubbish.

Is it normal to have a flare while taking leflunomide and should I have started feeling some improvement by now cuz I am on the verge of just stopping the leflunomide?

My next rheumatologist appointment is not until the end of October and I'm not sure how much longer I can cope with these side effects.

Sorry to carry on but I'm sure your all aware of what it gets like when having to live with RA.

Thanks
Kris

dreamdaisy

Oh dear, you are having a rough time and I empathise. I too have had great trouble with my knees (I have PsA and OA), in my case the aspirations helped to remove swelling but the injected steroids did nothing unlike the tablet version (which made me feel much better). Steroids (injected or swallowed) merely mask what's going on rather than tackle the underlying cause, namely a wonky auto-immune system. I have taken leflunomide but it chose to give me massive headaches rather than tackle the arthritis.

My hospital told me from day one that when I had an infection that required anti-biotics I was to stop my immuno-suppressants to help them clear the bug which to me entirely logical. Currently I take injected meth and humira, thanks to the latter I need BP tablets which for me are Ramipril and bendroflumethiazide (I began with amlodipine but that increased swelling). I have recently posted about stopping my sulph, but still take four 30/500 cocodamol per day and a small daily dose of Citalopram (an anti-depressant).

Yes, one can flare even though on the meds but your poor body is trying to cope with uncontrolled RA and an infection: enough already, yes? Please get in touch with your rheumatology unit to tell them what is happening, GPs generally don't know enough about the stronger meds we take and how they counteract the action of what they prescribe. I think you need proper clarification about what is what and I hope you feel better soon. DD

kristoff

Thanks for your replies...I will try and get in touch with my rheumatologist shortly and see if they can help.
I don't feel that the leflunomide is helping in anyway at the moment, I know there's a waiting period of about 6-8 weeks but I would of thought I would have seen some improvement after 6 weeks?
Many thanks
Kris

dreamdaisy

You're welcome and I hope you will contact your unit immediately; you are not well and they need to know what is going on with you so they can better advise / tweak your meds. Defining improvement is a tricky one; I know my meds are working because my bloods are lovely but not by any other measure, not any more. DD