Losing hair on methotrexate - does this happen to you?

Posted 8 years ago, 9 users are following.

sonya78375

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?

0 likes, 31 replies

31 Replies

ruth03300 sonya78375

Posted 8 years ago

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.
- sonya78375 ruth03300
  
  Posted 8 years ago
  
  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?
- ruth03300 sonya78375
  
  Posted 8 years ago
  
  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
- sonya78375 ruth03300
  
  Posted 8 years ago
  
  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.
frances85589 sonya78375

Posted 8 years ago

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
- sonya78375 frances85589
  
  Posted 8 years ago
  
  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??!
- ruth03300 sonya78375
  
  Posted 8 years ago
  
  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.
- frances85589 sonya78375
  
  Posted 8 years ago
  
  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
- sonya78375 ruth03300
  
  Posted 8 years ago
  
  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.
- sonya78375 frances85589
  
  Posted 8 years ago
  
  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
- frances85589 sonya78375
  
  Posted 8 years ago
  
  Well no not a problem or good strength to go on as felt suicidal many times. I can't have any other biologics as after last one two months later I had symptoms that mirrored MS but lupus coagulation bloods tests etc showed I had sticky blood in brain .I now hospital now as had interruption to medication.mostly ok apart from can't walk without jerking so after 10 days and 34 ward moves I am down in haematology unit ward. These diseases suck
- frances85589
  
  Posted 8 years ago
  
  That should read 4 ward moves. .lol
- sonya78375 frances85589
  
  Posted 8 years ago
  
  Gracious! I hope you have just great improvement from here on. Still on your lottery journey.
lisa82473 sonya78375

Posted 8 years ago

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.
- sonya78375 lisa82473
  
  Posted 8 years ago
  
  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?
- lisa82473 sonya78375
  
  Posted 8 years ago
  
  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.
- sonya78375 lisa82473
  
  Posted 8 years ago
  
  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?
- lisa82473 sonya78375
  
  Posted 8 years ago
  
  I have been on it since September of 2014. I don't really feel like I am getting worse except I have more foot pain and lots of fatigue. So, maybe the mtx is working?
- sonya78375 lisa82473
  
  Posted 8 years ago
  
  It's a whole new world to me. I hope your add-on improves things even more. Good luck.

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