I have been on methotrexate for 8 weeks now, 20 mg for the last 4 and I am losing heaps of hair. Everytime I put it up or comb or wash it, heaps of hair all over my hands. Unfortunately not getting any good effects from mtx on the RA, yet. But I was wondering if anyone else loses their hair, and if so - how bad does this get? What do you do? Or has anyone's Rheumatologist taken them off mtx because of this side effect? I am on folic acid 6 days a week already. I am a 39 year old mother and teacher, will need some sort of solution hat/wig wise eventually if this keeps up! Help?
Mmm I do lose hair but not to a great extent. I am not on such a high dose as you areare though. I do think you should discuss with your rheumatologist as maybe a lesser dose might help. Poor you. Good luck with the MX it does take a while to work.
Sorry to hear this Sonya.When I was on it my hair went thinner but was told it will regrow. My hair was thin anyway so wasn't good.takes about 12 wks I think for to get any benefit from methotrexate just like all the drugs. think they use this one in chemo aswell.
You try anything don't you.If you not think this suitable ask if you can try and alternative. They usu ally start you on strong drugs.I'm on sulfasalazine now. Not everyone works or suits everyone. It's like a lottery. Hope things improve soon for you
Thanks Ruth, I really appreciate that. Have you been on methotrexate a long time, just losing a bit of hair, but not super-noticeable? And does it work for you for arthritis pain now?
I have been losing my hair too over the last several months. Mostly along the part on top. I was not on folic acid. I am now but it doesn't seem to help. My rheum told me there is a diff drug he can put me on that fights nausea and hair loss symptoms but I don't know what it is yet. I'll let you know.
Thank you Frances. So true, like a lottery! Mtx is a chemo one though in a low dose, so I was thinking that surely I can't lose all my hair as if on chemo. Did yours regrow? Because I guess with chemo large doses they don't keep taking it forever. So I wonder if it can regrow while we're still on it. Is Sulfasalazine working for you? I can't have that because I'm allergic to sulfa drugs. So a different spin of the lottery wheel for me possibly. :-) or a future of cool hats??!
Thank you, that's interesting. Do you think that is an extra add-on with mtx or you will get to stop mtx? Yeah I don't think folic acid is doing much for me but there's no harm trying. Your timeline sounds similar to me, a month ahead, unless you've been on mtx a long time but only losing hair now. Do you think the rheum is going to change you right off because of the side effects? and has mtx worked for you otherwise?
The med would be an extra add on the the mtx. Honestly I feel like the mtx hasn't helped me at all. I actually think it has made me feel worse. Especially the fatigue. It seems overwhelming to me at times. My Dr. Talked me into using mtx injections that I have to give myself because he said it absorbs better and won't mess w my GI tract. My stomach is still messed up and now I have a rash on my face. He wasn't happy last week when I said I wanted to go back to the mtx pills but he finally agreed. It's just frustrating taking something that is supposed to be helping but makes you feel lousy while it's supposed to be preventing you from feeling lousy....if that makes any sense...lol.
Hi Sonya, I too am on Methotrexate & even though my hair is not coming out in gobs, it is thinning. I notice it on my comb & when I fix my hair. My rheumatologist warned me it would happen. She said she has never seen anyone lose all their hair but she said thinning was a problem & a side effect. She also said it could take 3 months for the methotrexate to kick in. I have ben on since May, just hit the 3 month mark. It seems to be working. My knee seems to be my only big problem. I hope you do not lose your hair. Hope this problem resolves itself for you.
Hi Sonya, I have been on MTX for over 2 yrs. After about 6 months on the drug I began to feel better. Yes my hair started thinning but I started taking Biotin-- that's a vitamin B. I take it every day and after about a year my hair started to thicken up, I actually got a complement on how pretty it looked, bout fell over, anyway ask your doctor and good luck.
Thank you Jo, I will try the Biotin for hair issues.
I have been MX for threthree years or so. I mainly lose hair when I run my hands through it and it is only a few hairs at a time. With regard to pain mx helps a lot and i would not like to be taken of it.t
I had chemo twenty years ago and lost all my hair. I lose a bit of hair now but it mre like thinning. I havhave reduced my MX to 10mg because of infections. Perhaps when your MX has stabilised you can have a lower dose and the hair loss will be minimal. To be quite honest the pain was so intense before I do not want to be taken off MX.
Jo thank you! That is so so great to hear. I hope I can follow in your footsteps. :-)
That's so great to hear what your rhuematologist said, and I did really want to know if the hair could all the way go. I just wonder at the rate it's thinning though - how can we keep that up do you think? Surely ever-thinning ends up in... But there is an answer below from Jo who has some good news about vitamin B, might be worth trying ay? My knee is also my biggest problem, though I had almost every joint going before starting prednisone. Now I am feeling more hopeful the mtx will work thank you, I will be more patient. One more month to get to three. :-) all the best to you
Yes I agree! That has been getting me down too. Would be easier to bear the sacrifice of side effects if we had good effects by far!!! People are reassuring that it takes (longer than I thought) for mtx to start working. But maybe it actually does not work for some people and maybe we are those people? How long have you been on it?
Well I was ok til rheumy put me on highest dose and it also was effecting my liver. I was ok on dose lower. Sulfasalazine does help with 10 mg steroids,450mg Pregabalin and 2 tabs Hydroxychlorine (can't remember dose as at moment I am in hospital and they locked in bedside medical locker)
I have also tried 3 biologics without success.Its hydroxychlorine has helped a lot thou
That's true Ruth, I wasn't losing hair when I was on 10mg. So great to hear that mtx helps your pain, and can be a good thing. I feel like that about my insulin (am a Type 1 diabetic) and protect it as a lifeline. I hope you are all well from whatever you had chemo from and you sound like a real survivor. All the best.
Got it! That sounds ok, I hope I end up like that, with mtx helping and not losing too much hair. You have reassured me. :-) keep up the good work.
Gosh. That is such a long journey you have been on to find good meds - I hope you have the perfect combo now? With a 12 week wait each time. You must be a pro You must have found much strength within to make it through all that. I think it's hydroxychlorine rheum mentioned to go to next. But I get we are all different. x