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Leflunomide... experiences?

I've been on methotrexate for 5 weeks now...losing too much hair. Rheumy suggesting I switch to leflunomide. I read the side effects online. It seems more daunting than the mtx. Please if any of you have experiences you can share with me, good or bad, are welcome. I need to figure out if I should bear through mtx since, other than the hairloss, I handle it quite well. Perhaps I should start using Rogaine. I don't want to be a woman in her 30s going bald.

The side effects that are most disturbing to me regarding leflunomide are the tingling, numbness, back pain, skin rash, cold symptoms, and reduced white blood cells....seems so scary and odd πŸ˜₯😒

Any advice please??

Thank you in advance!!

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I've only been on it a matter of weeks but I haven't had any noticeable side effects. I can't say that it's helped but my rhueumy says I need to give it 3 months.

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Thank you for your input!

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I've been taking leflunomide, actually stopped now as didn't work at all for me. Had raging flares whilst taking it. Didn't have much in the way of side effects. Maybe so.e nausea and numb toes. Unfortunately didn't lose weight either...this would have been a useful sied effect!!

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I'm sorry this drug didn't help you. I hate that we have to be guinea pigs testing this and that for months at a time to see if it's effective. And the worst is when it doesn't help but worsen our symptoms and conditions. Something that was really worrisome, as well, was how long it lasts in our bodies system. 1-2 yrs!

Thanks for sharing.

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I have been on Leflunamide twice - in 2015 and 2016 - first time for about 8 weeks and then about 12 weeks. Really wasn't good on my stomach which is why i had to finally give up on this one.! Also I realised after my second try that it is since taking this that I have numbness in my feet and left leg that is still ongoing and have had Physio but has not helped and rheumatology doctor has finally advised on an MRI. She tells me it's not related to the drug but it does seem strange that the numbness got more noticeable after my second attempt at taking it. Just wanted to share my experience with you and would be interesting to hear if anyone else has found the same. I was also on methotrexate and also lost a lot of hair but could not tolerate the drug, it did grow back once off it but you have to decide what's best for you and what you are happy with. All these drugs affect us all differently. Wishing you all the best xx

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Oh no!! I'm so sorry that the numbness stayed with you..that's horrible! We always assume (especially for peace of mind) that once we stop...the side effects will subside as well. Who needs to deal with more issues on top of everything we already need to deal with.

If you never had numbness before...I think it has to be the drug! Sometimes doctors don't acknowledge the obvious...why? I have no idea. Maybe they think we are being paranoid or too picky, I dunno. Each doc is an individual and can't judge them all but I will tell you this... When I called my main Rheumy to tell him about my hair shedding... He said, "no way... You haven't even been on it for 6 months."

Thank you for sharing Carol555. I hope you are able to get relief! If nothing shows up in the MRI, maybe you can all for a nerve conduction test if you think it's helpful in figuring out what's going on.

Hugs!!

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Thank you Jeznaskah but have already had a nerve conduction test and that was clear so will see what the MRI shows - not looking forward to that either as I am claustrophobic! I am on Sulphasalazine now and have been since March and have slowly increased the dose to 4 a day which seems to be the general dose maybe you could try that instead of the Methotrexate - no hair loss with that one so maybe worth asking. Wishing you all the best and gentle hugs xx

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I have been on leflunamide for 2 years and have not had any adverse effects it does help but not as good as i thought hoowever without it i would be worse hope this helps so sorry for yoourr pain this disease is the pits take care xxx

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I have been on Leflumonide for at least six months - combined with metho (which has thinned my hair) and I have to say I haven't experienced any bad side effects thus far and the combination seem to be doing their job of controlling my RA. I didn't want to take it at first but a very good friend has been on it for years and it has worked for him too. Biggest disadvantage is you mustn't drink much alcohol - not that I am a big drinker but I do like a G&T which I still have but not every day. Good luck

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I've been on Leflumonide for over a year and I feel so much better and I'm now in remission. I was previously on methotrexate tablets then injections and I felt so ill from the side effects. I would definitely recommend Leflumonide. Good luck.

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Took it for over a year. No side effects :) but no positive ones either :(

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I've been on leflunomide for 6 months - no bad side effects, but not effective for me. We are not Guinea pigs as such, this has been around for a long time, more that our RA is all individual and what work for one positively or negatively is not the same for each of us - a process of trial and error in finding the right path for each of us

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I have been on leflumide for 9months now it has helped arthritis but I have very bad numb feet and these awful red blotches up my legs. It is being looked into but have to wait two weeks before I know anything. I did notice my hair has got very thin I had thick hair before. This was my third drug as I could not get on with the others am also on steroids. Have just come home from hospital after having dose of pneumonia so am bit fragile at moment. Hope everything goes well for you. Sophie 17

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I am very much like you. I have just started taking it a week ago after failing on methotrexate and sulphasalazine. I had a long chat with the rheumatology nurse before I started and still have reservations but I was told that there is a medical pathway to follow, and Dmards need trying first before they consider biologics. At best I hope it works, at worst I'm thinking that this is just a step on the ladder I have to take to get biologics. A week in and no real problems so far but I'm only on 10mg at the moment. Good luck x

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Hi Jesnaskah,

I have been having treatment for RA since 2006. I took various drugs which either did nothing, or which I could not tolerate. I took Leflunomide for many years, without any apparent negative side effects. During that time my hair remained thick and my immune system kept me healthy in other ways. Leflunomide did not control the progress of my disease totally, but it slowed it down massively.

Due to about a 2 year delay in my diagnosis my RA had done massive joint damage prior to any appropriate medication being tried. Hence the disease was very well established before the Leflunomide was tried. In a three year period from 2006-2009, I had both hips and both knees replaced due to my version of the disease being so destructive.

Once I was on the Leflunomide virtually all the joint destruction happened in the 7 weeks I had to be taken off it every time I had a joint replaced. Basically when I was off my Leflunomide having my hips done, I wrecked my knees and when I was off the Leflunomide whilst having my knees replaced, I wrecked my shoulders and elbows. I have never had the elbow and shoulder replacements offered, as I was too fearful of what would happen whilst I was off medication to have a further 4 joints replaced.

Leflunomide is not the answer for everyone, but for me, it was the best option available and without it I would have been in residential care many years ago. It is one of the few drugs used for RA that was actually developed for RA. Much of the rest of what we take are "hand me downs" having originally been developed as cancer drugs.

In 2010 I tried both Embrel and Humira, both these are injectable biologicals. For me, the side effects of those biologicals left me unable to even get out of bed except for the 2-3 days a fortnight, just prior to my next dose. As such I went back on the Leflunomide.

From the Autumn of 2014 until 22 weeks ago I was on Tocilzumab. It controlled the progress of the disease totally, but it also totally devastated my immune system, leaving me constantly ill with bacterial infections, yeast infections and going down with every virus that came my way. I also lost masses of hair on Tocilzumab.

If you are being denied biologicals they can appear to be the Holy Grail and many folk think all their problems would be over once they have tried enough other drugs to be allowed to progress to a biological. For some the biological will be the magic bullet, but they too can have some very nasty and potentially life threatening side effects.

It is really all about finding a way forward that works for you. For me I am currently medication free. To get here I have refused to take the cocktail of the 13 different drugs my GP considered were essential. I have been off my Tocilzumab for the last 22 weeks at my Rhumys insistence, to give my body a chance to recover from the various infections which had plagued me whilst taking Tocilzumab.

I am in no way advocating that anyone else stops taking prescribed medication without appropriate medical advice. Most of what I had been taking was to counteract the side effects of something else, until I felt the whole situation had got completely out of hand.

For me dietary changes have made a big difference and changes in my situation and lifestyle have reduced my stress levels. I would not say I am symptom or disease free. My damaged joints are always going to be problematic. It is just that right now the side effects of the medication were worse than the effects of the disease.

I would probably never have arrived at my current situation if my disease had not been brought under control by the Tocilzumab infusions.

Working out the right way forward for each of us is a very individual thing. I hope you all find the way that works best for you and soon.

Wishing you well.

AARA

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It really sounds like a horror story. How putting pill upon pill and med upon med resulting in a chaotic situation. Makes you wonder would it have made a difference if dietary changes would have been taken alongside the med treatment protocol from the start(?)

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Hi, I was on lefllunomide for four months last year and I lost so much weight my rheumy took me of it immediately, I got down to 41kilos ( not good ) I hope you find a salution soon. X

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I've been on it for nearly 3 years and haven't experienced any of the side effects you mention. I take it with Salfazalazine and the combination has been working pretty well for me. Didn't lose any weight unfortunately!

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Hi

I had to stop methotrexate for the same reason. Also had sulfasalzine and hydroxychloroquine. Now on leflunomide been great for me.

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I had same thing and LEF is great. Been on it 3 years no problems and in remission. Normal life and no side effects at all.

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Have you upped your folic acid to 1 every day except on metho day! It helped with my hair xx

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I was on Leflunomide in combo with MTX for about 4 years. Had to come off it in the end because it pushed my blood pressure really high despite taking an increasing dose of blood pressure pills. Didn't have any other side effects though. Consultant took me off it and I went onto injectable MTX instead of the oral stuff. I believe increased blood pressure is one of the main side effects although nobody else here seems to have experienced that side effect.

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I couldn't take it, my blood pressure went through the roof. After being on it for a few weeks I saw my RH nurse for a follow up appt. She said as my BP was high in would have to come off it until unsettled down and go on medication to reduce my BP and then go back on it. Luckily for me I had an appt with the Consultant coming up and I explained him what was going on. He took my BP and then stopped the meds straight away and put me o a biological treatment. As Lefludomide can stay I your system for up to a year, I am still suffering the consequences and have been told I have Stage 1 hypertension. Up until taking the mad I had not had any problems with my BP.

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I didn't have any side effects from leflunomide, I was on it for over 10 years πŸ™‚

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Many thanks to all that have responded!!!

Clearly, you all have your own unique experiences with few having some overlapping symptoms...it's amazing to have worked so well for some and so negatively for others.

I'm not sure what to do myself yet, how much longer should I allow my hair to shed... It's at a point where it's getting noticeable. Being a newbie to all of this... All I can say is I had major reservations about mtx... But turned out I was able to tolerate it quite well (aside from hairloss of course). So maybe I should just bite the bullet and give leflunomide a shot...πŸ€•

Again... Appreciate all the input, buddies. I'm so glad to be part of this forum!! Hope everyone can have a good weekend!

Jes

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Hi. I took methotrexate but like you had to stop it as my hair was coming out. I was gutted as I felt good on it otherwise. Now on a combination of leflunomide, sulfasalazine and hydroxychloraquine. No side effects at all and have lost some weight is not a bad thing in my case. Have cut out alcohol though which is a shame but feeling much better for it. Good luck and I hope it brings you some relief.

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I've have been on Leflunomide for 9 months, I have numbness and tingling in my hands and feet. Rash on my face which I think could be the pills. The nurse said that it could be the pills. hope you get sorted

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Hi six weeks ago I came off lefluidmide due to white cell keep dropping, persistent rash all over my face but the worst was a cough i couldn't shift. It took 6 months for it to go as the drug stays in your body for up to a year. I also felt and was physically sick on them if i took them in daytime. I started taking them at night which sorted the problem. Overall it did help alittle with pain levels. Hope this helps take care

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Hi, I've just started on leflunomide and have been feeling quite sick and lightheaded also have a strange numbness in my right hand. Im on 20mg but hoping to drop down to 10mg and see how I get on with the lower dose. Hope you find something that suits you. It's very helpful to read peoples experiences and definitely gives you a boost that you're not alone with this battle of pain , side effects and everything else that comes with it.

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Be careful with the numbness, I've read ppl say that it persists even after stopping the meds. Hope it gets better

Xx

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Before you give up MTX, try a higher dose of folic acid. If more folic acid isn't working for you, it could be that your body doesn't break down folic acid well. That happened to me - I was losing too much hair so I increased folic acid... Then I switched to liquid folate on the advice of a Naturopathic Doctor. I do 4 drops under my tongue every day. It made all of the difference. My hair rebounded and haven't had any problems.

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Wow! Really!?! I will definitely give it a try then! I'm so excited πŸ˜€ I know it may or may not work, but willing to try anything at this point. (Even started minoxidil last night).

May I ask..how long till you saw a difference in your hair?

And thank you so much for posting a reply.

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About one month after changing to liquid folate I saw a difference - less hair in the sink

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Thanks for getting back to me. I'm so happy to hear that this helped you and were able to remedy the situation!!

You've given me something to look forward to 😊😊

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Hello, I hope you have had informative replies. A really difficult choice and a purely individual one.

I had Leflunomide as a stepping stone between Biologicals. Without swamping you with my details. I had to come off Enbrel and Nerol (Cyclosporine) and tried Leflunomiide very reluctantly. Like you the side effect leaflet really worried me. I didn't work for me, raised my blood pressure and I just felt wrong. Now on Rituximab and due another set of infusions. Just had a bad flare but feel great after a steroid injection to tide me over. Great short term but doesn't modify the disease.

Wishing you the best of luck

Michele

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Thank you

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I don't know if this would help you but I have been taking Dr. Axe collagen in powder form for several months and have had thicker, shiny hair, softer skin, thicker eye brows and lashes. Perhaps this could help? Good luck! Take care, Penny

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Hmm, that's an idea. I already take a hair supplement called biosil. I wonder if I can also take the Dr. Axe one too. I will look into it. Thanks for the suggestion!

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I'm glad the Mtx is helping you. It did wonders for my terrible R.A. pain - but I was well warned that it does take time, usually 3months. I didn't feel sick, but the weight dropped off me, due I think to the high-dose codeine I was on besides the Mtx taking away my appetite - this stabilised later - and I did have it to lose. My hair is still thinning; again I was forewarned about this and vehemently assured that I would not go bald. I'd rather not, of course! but am so grateful to be pain free - I'm told that I have the aggressive type - and looking very well actually, that I'm just glad of Life, and decided upon wearing a wonderful wig if it comes to it!! Good luck and God bless x

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The tricky part is I'm not sure if it's "working" since I'm still on 13 mg of Prednisone. Which by the way...is my savior. If it weren't for the Pred, I wouldn't be functional I'm trying to taper the Pred, but very conservatively, about 0.5 every few days depending on how I feel. But as the mg gets lower, feeling a lot more stiffness and aches in many different joints.

No one reassured me I wouldn't go completely bald..so I'm not sure if my body will adjust to the methotrexate or of it will steadily continue down this frightening pattern. Lost a significant amount in the first 2 weeks I started and kept reassuring myself I could always wear a wig. But now that it's starting to become obvious, with a lot more scalp showing...I'm not as confident about it. It's as if when it became a reality.. like whoa this may really go all the way...I started to be anxious about it. Which of course...doesn't help anything!

I just gotta make a decision. I think I may give leflunomide a try. Rheumy thinks it's unlikely I'll also have hair loss with that one. But it's the OTHER side effects of leflunomide that have me questioning whether I should even give it a go. Decisions, decisions. And I'll never know unless I try. I just started a new job and am going thru intense training for the next 5 weeks. I can't afford to feel like crap. Sorry to vent. I'm just so frustrated.

Again, if any of you are reading this post, I want to thank you for chipping in. All your comments are helpful, and I appreciate the time you took to respond.

Continued best wishes πŸ€—

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