Leflunomide and tingling.

Becky88

Hello. This is my first forum contribution although I often look at other peoples' questions and answers. I was diagnosed with RA in 2008 and am currently taking Hydroxychloroquine. 6 weeks ago, I was also put on Leflunomide, which was going ok until i started getting strange tingling sensations in my legs, feet, groin, fingers and top of head. Due to this, i was taken off the Leflunomide to see if these symptoms were due to the drug. I have read on the internet that Leflunomide can cause peripheral neurophothy/problems with nerves. Does anybody out there have any experience of this or any advice that they can offer me? Also, I don't know how long the drug stays in your system once you have been taken off it. I would be really grateful for any replies and would also be interested to hear about other peoples' experiences with Leflunomide. Many thanks.

dreamdaisy

Hello and welcome to The Creaky Gang! I took leflunomide for a couple of months a few years ago. It did nothing for the arthritis, preferring to give me crackling and sparkling headaches. I took it alongside sulphasalazine and an anti-inflammatory. I was taken off it and then began cyclosporine: I cannot recall the time gap between the two. DD

theresak

Hello and welcome.

I took leflunomide a years ago, when MTX & SLZ failed to have any impact on my RA. I don`t remember any tingling sensation while taking it, but it was stopped quite quickly when it played havoc with my liver. It is probably worth mentioning to your rheumy nurse.


I can`t remember how long I had to wait for it to be out of my system - as it was about my 4th DMARD/combination I was then given Humira.

Becky88

Many thanks for your replies. I really appreciate all of your help and hope that the sun is shining for you today.

Jaclyncollin

Hello,

I am currently weaning off from leflunomide. I was on it for past 3 months. Sadly my body couldn’t tolerate it and blood count gone way down to the unacceptable level. As a result, my rheumy advised to stop leflunomide and may start humira depending on my response. I didn’t face tingling with leflunomide but there are reports on internet which says that it could be possible. You can experience burning, numbness, tingling, or painful sensations in the arms, hands, legs, or feet. If you do not undergo this drug elimination procedure (as that of mine), leflunomide could stay in your body for up to 2 years and that’s sad.
P.S : There is a procedure called as leflunomide wash out , where you doc may administer you a special drug to get rid of leflunomide faster from your body. Have your doctor discussed this option with you?

barbara12

Hello Becky
Sorry I cant help with meds but I just want to welcome you to the forum..

Becky88

Thank you to Barbara for your nice welcome. A friendly word is always appreciated.

In response to Jaclyn: Thank you for your reply. I really appreciate it. My doctor did not mention the washout procedure although I have read about it myself. It worries me that it was not mentioned and that little advice was given to me in terms of whether the tingling sensations could be damaging or permanent. I did read on the internet that the effects can last longer if one stays on the drug for longer than 30 days from the onset of the tingling. I was taken off it after about 28 days. A few weeks later, I am still having the side effects but i am confused as surely the drug stays in one's system for a while so it is difficult to say if the symptoms are due to the drug or not! Very confusing. I have heard of most RA medication but Humira is not one that I have heard of. I really hope that it works for you. Best wishes and thank you again for your reply.

dreamdaisy

Hello again, how are you getting on now? Meds can take as long to leave our systems as they can take to make any difference so the norm for either is between two and twelve weeks.

Humira (which is injected) is one of the anti-TNF treatments, it's one step up from the DMARDs. I have been on it for some time now, combined with injected methotrexate and tablet sulphasalazine. DD

Becky88

Thank you for your reply, DD. The tingling is still pretty much the same as it was, despite being off Leflunomide for about 3 weeks. I am unsure about whether to start it again or not as I am pretty sure that the tingling and pins and needles are down to this medication. If it is simply a side-effect, I don't mind putting up with it, (as the other DMARDs that I have tried have given me headaches and/or nausea). However, if the medication could cause me nerve problems, that is a different matter. Thank you for your advice and hope you are feeling ok.