Anyone on Leflunomide?

[hedgehog45]

Hi

After being on sulfasalazine and hydrochloroquine for 6 months, I've felt ok until the last month when the pain in my right wrist has been absolutely horrendous. I can't use my right hand much at all which is extremely frustrating and limiting. Having had another MRI last week, my rheumy now wants me to have a go with leflunomide to see if it helps (as he's not keen to keep giving me injections in to that area).

I want the pain to go as am feeling v low but am nervous about taking another new drug. Having read about side effects with leflunomide, it says that hair loss is a possibility. Has anyone suffered this as a result of taking it (or any other side effects for that matter). I was on methotrexate previously which made me lose hair, so I got taken off that. I don't want a repeat situation and also note that if you start lefl and come off it, it can take up to two years to get out of your system!

Any feedback or advice most welcome as I'm confused and desperate.

[medway-lady]

I've been on Leflodamide (Arava) since Oct last year and its great. For me that is! yes extremely painful , much worse than the RA for about 2 weeks after the first dose. Then the pain receded and I begun to feel better. Now I'm in remission no pain, no swelling, back in high heels and whilst MTX caused me extreme hair loss the Arava has left it alone. No side effects since the one described above and who cares about the 2 years because they can wash it out the system anyway but I'd kill anyone who said they'd do that to me. Its changed my life, back to the gym, learning to dance and a rambling again. Life is great and as my consultant said you'd not be feeling like that without the Arava. I take it at night but for no particular reason along with Omeprazole as I also take Riveroxaban and its thought better to keep a bit of time between the 2 although they are compatible. Its always a gamble but to be honest without this stuff I'd be in pain, tired, irritable and have swollen hands etc etc as it is I've nothing bad to say about it and have been told the pain it caused me for those 2 weeks is are but a known side effect. But it really hurt to the extent it made me cry, but it really was worth it and you might not get that pain.

[hedgehog45 in reply to medway-lady]

Hi. Thanks SO much for the feedback and vote of confidence. It's really good to hear that it's working so well for you and gives me hope that there may be light at the end of the tunnel! Thanks for sharing your experience with me and long may your joints be pain free!

Xx

[kenw]

Have been on Leflunomide for over three years having come of methotrexate after coming out of hospital. For me it has worked extremely well with no side effects and excellent control. There is a difficulty apparently coming off and I think I was told (having asked the same question as your self ) that it can be flushed out of the system with charcoal, hope I am right with the process but check. Given that I was on a whole host of medication to try to control and in and out of hospital and have now almost forgotten the last time I had a flare. Unfortunately not all drugs work the same on different people but this is a very easy medication to take in comparison to injections etc. Good luck and best wishes Kenw

[hedgehog45 in reply to kenw]

Hi. That's great to hear and very helpful indeed so thanks for sharing. I hope it continues to work for you and that the word flare becomes a thing of the past! Many thanks indeed. X

[bella-bailey]

Hi Hedghog I was put on leflunomide quite a few years ago,I didn't get any side effects but unfortunately for me it didn't do any good for me but that's not to say it won't for you,wish you well on it Jean x

[hedgehog45 in reply to bella-bailey]

Thanks Jean and I'm sorry to hear it didn't work for you. I hope you are on something that does work.

Jayne x

[cacj56]

Hi. I was diagnosed with RA in 2008. After trying several other drugs, I was prescribed Leflunomide. It took 3-4 months before I felt any relief, which was minimal. I wanted to give it a good try as I won't take biologics. After much reading, I changed my diet, eliminating gluten, refined sugars, processed food, and dairy and eating organic as much as possible. My condition improved, and, then, feeling I had nothing to lose, decided to have all my amalgam fillings replaced by a biologic dentist with compatible materials (determined after a blood test). My health improved further. I started Low Dose Naltrexone (LDN) therapy shortly thereafter (after weaning off prescription opiod pain medications, which was difficult) and discontinued Leflunomide. I feel better yet, very little wrist pain and lessened inflammation and swelling. My energy level is up; I don't feel generally unwell anymore, and no more night sweats or rashes. If you haven't already, you might want to research some of these things. I feel LDN has very little risk for possible substantial benefit. I figured "what's the harm of trying it," and I'm glad I did.

For me, the process of changing diet (which I had to do gradually as it was difficult for me), amalgam removal, eliminating Leflunomide and starting LDN took about 18 months as I tried other things along the way that didn't work. If I knew then what I know now, I would have made these changes at a quicker pace and feel I would have had success earlier, but I always thought that improvement, via more natural methods, would likely take some time and determination, if they worked at all. Good luck with whatever your next step might be!

[hedgehog45 in reply to cacj56]

Thanks cacj56, that is all very interesting to note. It's still early days for me and I too am keen wherever possible to help manage this condition through as many natural methods as poss. I shall certainly do more research into the things you have mentioned so thank you for your most informative and helpful post.

[Pat64]

Hi,

I do sympathize and fully understand the situation you are in. I also have been on Sulfasalazine for over 2 years in fact but it seems to be less effective now and for the past 2 months I have lost the use of my right hand, with limited use of my left. Rheumatologists see swollen wrists but they don't always understand the pain, anxiety, depression and greatly reduced quality of life that this can cause. I have also been offered Leflunomide but I am extremely concerned about the side effects which are never fully explained at hospital appointments. I posted a few days ago about more information on this drug and received some excellent replies which I hope will help me make a decision as I am still rather reluctant, knowing now that it can also affect DNA. I thought perhaps you may find some of the replies to my post useful too and I hope by now your hand may have improved and you feel better.

Pat 64.