Switching from MTX to Leflunomide

[turtlemom2]

Switching from MTX to LeFlunomide. Anyone have an experience with this medication and if so and you took MTX before did you notice any differene?

[charisma]

Hi turtlemom2

Yes, but each of us reacts or copes with these DMARDs differently. We are unique.

I hope you do well on it.

[slou222]

I have been taking leflunomide since my diagnosis 5 years ago. I noticed a huge improvement with my feet. My latest Rheumatologist put me on MTX about 2 years ago, because he was a new doctor for me, and he wanted to try something different. I was on the MTX for about 5-6 weeks, and I had to get off of it because it had me nauseous 24/7. And, my hair was falling out in huge amounts. I didn't notice MTX doing anything different for me, either.

I do pretty well on the leflunomide, although I've been in a flare up for weeks now. But I have learned, sadly, that they will come on no matter what you're on.

The one downside to the Leflunomide is it has made my normally straight hair gradually look like I've got a perm. So strange! But others have said the same thing.

I hope you do well on it!

[sqeek in reply to slou222]

everyone is different, works for some but not others,funny that ? did'nt work for me,made me so crook.hair falling out,no appetite,lost 11kg and so fatigued. they put me on methotrexate and feeling a lot better, you'll never know if you don't give it go. good luck

[Sjhoney]

Hi, I’ve been on lefluonomide for about 5mnths now, still waiting for it to kick in. It has suppressed my appetite which is good on the weight loss front but it has taken away my enjoyment of eating to some degree. No other side effects.

Good luck 😊

[Pawz4me]

Leflunomide was added into my treatment along with methotrexate in December. For the first couple of months I had some occasional minor dizziness and a bit of neuropathy like pains in one of my big toes. Those were all the side effects that I noted. Leflunomide did help a little more than just methotrexate alone, but recently I've also been put on Enbrel. Hoping to eventually first be able to wean off leflunomide and then hopefully off of methotrexate, too. But leflunomide has been a very easy medication for me to tolerate.

[BonnieT]

Hi, turtlemom! I’m actually considering this same change. I’ve been off MTX almost a month. My rheumy is due back in September. She said we can consider leflunomide but it’s an old drug. I said I’m old, that’s fine. Kidding aside, a friend made this switch and said she’s very happy she did. More relief than with MTX. Good luck to us that we have the same results!

[turtlemom2 in reply to BonnieT]

I am a little nervous about it as it is taken daily but the MTX was giving me such awful side effects some of which I am still having even a month off of it. So far this is the second day and I am not feeling any different but I have high hopes! Something has to work!

[turtlemom2 in reply to turtlemom2]

It's weird because on MTX it seemed to sneak up on me. The side effects were so bad that until I stopped it I did not realize that it was actually working a bit. The more I took it the more it built up in my system kind of thing. This proved not be a good thing for me.

[BonnieT in reply to turtlemom2]

Exactly like me. I was on it for a year and a half. It helped a little. But I reached a point where I felt like I’d been poisoned and was dying. My pains were coming back so I started prednisone I’m taking 5 mg a day and want to cut down to 2.5. Then in a few weeks I’ll see my rheumy again and go from there. Maybe with leflunomide. She did tell me that MTX will stay in my system for three months. Hoping leflunomide works for us.

[Hidden]

I'm on both of them but have taken them individually too. I had less side effects with Leflunomide, but then I don't have too many side effects with MTX either.

[nomoreheels]

I tried LEF a couple of years ago as double therapy with MTX, the last of 3 DMARDs which were unsuccessful. I remain on MTX but the reason I had to stop LEF was carpal tunnel & peripheral neuropathy, both bilaterally & confirmed by two neuropathy studies done a month or so apart.

My experience could be polar opposite to yours, I hope so anyway, & that you have nothing but a good response.

[BonnieT in reply to nomoreheels]

Nomoreheels, I have peripheral neuropathy. What did that have to do with the meds? I’m all set to think I’m switching from MTX to leflunomide! Oh, no!

[nomoreheels in reply to BonnieT]

My Rheumy said it was a rare side effect of LEF but the latest NICE compilation of side effects lists PN as common or very common. As with any med we're all different in how we react or the side effects we experience but still, & again as with any med, the only way is to try it. I complained of the symptoms (plus RH Carpal Tunnel initially which increased to bilateral) & she agreed to arrange the tests which were conclusive. A repeat set were arranged a little over a month after halting LEF (symptoms were abating) which showed improvement. Two years on I'm generally ok, CT returns when I'm less well controlled but that's RD inflammation affecting the flexor tendon sheath, as yet not severe enough for another op.

If you already have PN before starting LEF I would nevertheless have a word with your Rheumy, see what his/her thoughts are about you starting it & if it's thought your symptoms may increase. It's a difficult one, but I do think the only solution is to try it & see. I'm convinced mine were brought on my LEF as I've said , the tests back this up, & although I have had CT since (not the best controlled I've been of late) the PN hasn't returned.

[BonnieT in reply to nomoreheels]

I found an article on this. ncbi.nlm.nih.gov/m/pubmed/1...

Very interesting. As I’ve had PN for years and is painful and affects my walking I think I should not try LEF. something to think about. Thank you nomoreheels.

[nomoreheels in reply to BonnieT]

Good link Bonnie, I find PubMed reliable resources. It more or less mirrors my problems on LEF, all but the age, I was 57 & on LEF a total of 7 months but symptoms were obvious at around a couple of months, the start of anyhow. They worsened the longer I was taking it.

I'd discuss it with your Rheumy, there may be other DMARDs he'd prefer you to try given you already have PN. It is painful, I empathise.

[BonnieT in reply to nomoreheels]

Thank you nomoreheels. I keep trying to find a local support group for PN but no luck to date. I’m hoping to get some help through chiropractic therapy. I have a new prescription for it but I don’t know yet if it’s covered by my insurance. Hoping! 😊

[RA22345]

Hi. I was on mtx for almost 10 years and then switched to Leflunomide. I have fewer side effects and similar disease control. So for me it's been quite positive. Hope that helps.

[turtlemom2]

Update: First off I am very sensitive to medications. That being said I already feel a difference with LEF. I have no side effects except a headache that does not last long and I am guessing that since this med is taken daily that it has a shorter time period in your system where it works at first. I take it nightly. I wake up with NO PAIN.YAY !!! Around 5-6 the pain is bad again. BAD. I whimper until I can take it again before bed. I am hoping that goes away or it lasts longer before the pain as I continue to take it. My gastro side effects I had on MTX have pretty much left. To me I am grateful for the even temporary pain relief. Because of this new found freedom I interviewed for a Supervisor position where I work. No pain gives me my life back. I know for now I have that 'window' to get things done but that window is something I did not have before. Today I still feel no pain when waking. I am a bit unbalanced and feel a bit fluish but without the fever or sore throat but no pain. I know that the flu like symptoms are a side effect with LEF but nothing that would keep me down. So far so good.

[turtlemom2]

Strange effect I have had lately. I have lost my appetite. I started taking it on August 1st and now my pants are baggy? I need to lose a lot more as the Prednisone made me am Umpa Lumpa but it is weird. I have heard that Lef can make you lose weight but I thought it was due to nausea like MTX makes you. I am not to badly sick to my stomach with this medication. It does tend to raise my heart rate a bit when not exercising but I think I will work out today for the first time in YEARS due to the pain of RA. Anyone else have simular effect with LEF?