Nerve damage warning: This medication can damage the nerves in some people and cause numbness, tingling, or burning pain in the hands and feet. This can go away once the drug is stopped. However, some people continue to have symptoms.
I do have this tingling feeling in both my hands and feet. Is this due to leflunomide? I started leflunomide in Jul 2015, I have the feeling since Aug 2016 until today, the effect comes after a year of leflunomide? I did complaint to my rheumy, nothing has been done and no answer has been given. I will ask my rheumy again during my next visit since I have this information in hand now.
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Amy_Lee
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Every medicine should come with a leaflet which tells you how to take if, and what the possible side effects are. They usually also say which side effects should be reported to your doctor urgently, and which side effects mean you should stop taking the drug immediately.
Every time you start a new medicine you should read this leaflet, and keep a copy to hand. If you don’t get a leaflet in your box of drugs you should ask the pharmacy why not. But you can always google for one, the name of the drug followed by PIL or patient information leaflet. Here’s the one for Lef
Thank you, Helix for the response. You are right, we must always read the leaflet in the box. Unfortunately, I normal do not read them. Will have to read them in future for any new medicine added to me.
This is what RA meds do they do not come without risks to our over all health😨New research comes up with new risks and this makes life hard for us. Not easy to make decisions about what meds to take and understand their effects since really not even our doctors know.
You are indeed right to say so. I would rather surrender myself to my rheumy to make the best decision for me as it is too risky for me to decide on my own.
Dear Paisley, like you, I ignore the enclosed leaflets as the wordings are just too small. I rather find out from Google where I can read better. However, like Helix said, it is more complete and direct to read from the enclosed leaflet indeed.
I have found that my rheumy/US was not side-effects saavy or forgot. He did not tell me about plaquinel & eyesight, or skipping folic acid on mtx day, or contraindications of ibuprofen& mtx. Better to ask RPh & look at Product Info insert yourself. I do not expect dr to go over all, but eyesight baseline? Come on!
Not sure if this prolongs any side effects someone may have, but I remember my rheumy telling me that leflunomide can remain in the body for well over a year after stopping it.
The good thing is it said once we stop taking leflunomide, the side effect like the tingling of the hands and feet will stop. In my case, my rheumy told me that the plan for me is to stop mtx first, then leflunomide. I am not sure when they want to start this plan for me. Now I am taking 7.5 mg mtx and 20 mg leflunomide.
Once I realised that the Leflunomide had caused potentially life long damage to my nerves, I took the decision to stop taking it myself. I called the specialist nurse and reported both the effects and that I had stopped taking Leflunomide.
I believe it is my body and whether I take meds or not is my decision. I will listen to advice, of course and research things for myself, but in the end it’s my choice.
You really dare to stop taking leflunomide on your own. I dare not do that until my rheumy instructed me to do so. But now that I know more of leflunomide, I will ask my rheumy again.
I had peripheral neuropathy & carpal tunnel whilst on LEF Amy. My Rheumy ordered tests whilst on it & halted it specifically for the repeat tests. I posted about it here healthunlocked.com/nras/pos...
Pleased to say I have no remaining side effects. I do still have carpal tunnel symptoms intermittently but I'm pretty sure that's due to localised inflammation as it tends to show itself after a bout of gardening, planting especially. I'm beginning to think this is something I’ll just have as I had carpal tunnel decompression when very well controlled so wasn’t able to blame poor disease control.
Just read your post, it was 2 years ago. In my case, I had the tingling feeling on both my hands and my feet after about 1 year of leflunomide so I am not very sure if it is due to that. I will ask my rheumy again when I next see him.
I hope it would be so simple as rheumies always have the right answers🤔but we know it is not so. This puts us pas in a a hard place. Tingling in arms and hands usually has to do with nerves in some way. As a side effect it seldom is see right away. Lots of info on net that can be of big help. Good luck
Sometimes too many information on the internet will make me confuse also. Anyhow, with this information in hand, I will certainly ask my rheumy on my next visit.
Yes it was 2 years ago but the side effects remained the same. Not sure when I posted it matters Amy, unless I'm misunderstanding you. I’ve experienced side effects after many months, even years, on a med, in fact am having to have my MTX reduced due to side effects I'd not had when I first started over 10 years ago. Maybe this helps?
I will not reduce or stop my medicines unless it is instructed by my rheumy to avoid any problem. I will ask my rheumy and see what he has to say next. I certainly appreciate all information posted here.
As you say you need to discuss this with your Rheumy Amy. Your symptoms do seem to be pretty common in LEF though so stick by your guns if he starts backtracking. Good luck.
Wow! thank you for the post as I didn't know this at all; I have only been home three days with another flare. I told my Rheumy the same thing, as it has been happening for about three months and I started Leflunomide last year October. I have been experiencing numbness, tingling in my toes and my hands. My rheumy said it sounded like a nerve issue, my GP just shrugged when I told her two weeks ago.
This information I will take along with me when I see my GP on Tuesday and see what they say, once again thanks for the share.
Yes, the more we read, the more well equip we will be to see our rheumy. I also just came to know after reading the article. I am so glad that I came across this too.
Well read leaflet, spoke to pharmacist and rheumy. My rheumy said he doesn't remember being made aware of this but was glad I brought it to his attention. I told him my pharmacist does think it could be the Leflunomide. He said it could be the R.A but it could be the medication. He hasn't stopped the Leflunomide, he has decided to monitor it for awhile. I have to say that since I had the Ritx infusion (last week), I have only had numbness and tingling in my fingers and toes twice, so will just watch and see.
When I attended the World Arthritics Day in the hospital last week, I told the head of RA that my hands and legs tingling. She suggested a nerve scanning, she did not mention about the leflunomide. I will highlight this to her again when I see her next.
Hi Amy_Lee - hope this message find all good for you.
I wonder if you can help? My Rheumy wants me to start Leflunomide today, I was trying to avoid 😬 however, due to the joint soreness he wants me to try. whilst I know we are all different - just wanted to know how you are finding it to-date? Did you stop? I am taking it with my biologic. He said take with my breakfast.
I did not stop as my rheumy never give me such instruction. Basically I work very closely with my rheumy hence I will not do anything without his instruction. Currently except my hands and feet tingling, I am perfectly normal. I am also taking methotrexate beside leflunomide. I take all my medicines after food.
Well, I am glad my point is proved. I had Leflunomide and Prednisolone and three days later I couldn' t eat . My bottom teeth were so numb and painful. That numbness is still there. Also hands and legs pins and needles. Rheumy nurse said just stop it if I didn't think it worked. Consultant prescribed atorvastatin 40mg.... for inflammation. But I read that statins should be started with a small dose. I asked for 10mg but GP prescribed 20mg. That gives me severe liver pains. So now I am only tolerating mtx 15mg. Once a week.
Trying fresh tumeric tea- golden milk- also ginger root tea. And Hemp natural gel from amazon. So far so good. Not taken any painkillers for months.
I had an hospital appointment last week, and was told that my liver function was high, but the Dr was good, she said that have another blood test, if it is high will have to think about it, if it alright than we will ignore it.
It was alright , not high but think it was in the normal range.
Do you mean it is due to leflunomide? When my liver indicators were very high, my rheumy reduced mtx instead and my liver indicators have been okay since.
I have mostly had high Liver tests due to Salfalsalazine, didn't think much of it, but it was just a one off. Thank God.. as you have mentioned Lefodomide, don't take Methotrexate as I had a swollen liver with it.
There seems to be numerous eventual reasons for the tingling of hands and feet. Perhaps an idea to go through this list, if anything fits your situation(?).
Just finished reading the article of the link. I believe in my case should be the RA and the DMARDs related problem. But then I did not see mtx and leflunomide listed. Anyhow, my rheumy said it could be the damage of the nerve so she would arrange scanning for me.
Hello AL I have also read in several studies that Mtx and Lef should not be mixed because of the risk for liver and neurological complications. This combination has later shown to be more effective than mono therapy with eather. It was shown that the toxic effects are not seen often but close follow up is needed and neurological symptoms as well as liver enzym elevations should be taken seriously. I have understood that you have had both during your medication with Mtx and Lef(?)
Yes, I am taking both mtx and leflunomide since many years ago. During the process, my liver indicators did went up more than triple and double a few rounds. Then when my mtx dosage was reduced, the indicators came back down to normal. Unfortunately, my hands and feet have the tingling feeling a year after I started leflunomide. Since the head of RA department said she will arrange to scan my nerve to determine if my nerve has been damaged, so I believe she will do a good job for me.
Platform here really open my eyes on a lot of different areas to look into. We all have our own experiences, hence we can learn from each other faster rather than we go round alone without any support.
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