My hair loss is getting worse from methatexate !!

You poor things!  I put a discussion on here a few weeks ago when I was feeling similarly, my hair falling out heaps due to methotrexate.  I am a mum and teach 5 year olds and I so get it, losing your hair is a whole different thing to all the pain and disability.  Such a part of your identity.  RA has got my voice at the moment too!  (CAn you believe it, there's a joint near your voice box and some RA sufferers lose their voices when inflammation not under control) :-( that's my identity too. 

Anyway I do just want to say that when I told my Rheumatologist it was happening he increased my folic acid from 5mg a week to 5 mg a day.  When I posted my discussion this was making no difference (after two weeks of increased folic), but now the hair loss is definitely decreasing.  It is still more than usual, but less than half of what it was.  Have you been on 5mg folic a day this whole 5 weeks?    The other possibility I think could be my body getting used to mtx, but my other side effects (nausea, sleeping heavily for more than 12 hours after having it) are not less.  I am also hitting the fish oil hard two caps at every meal now.  Someone suggested biotin (vitamin b?) to me so I'm going to ask the doc about that when I see him next.  Anyway, I did want to pass on that little bit of hope.  

You know what else made me feel better was looking at chemo head scarves on the internet.  Gosh!  But there are some nice ones, honestly.  The thing about chemo is that it has an end point, and we are supposed to stay on mtx, but my Rheumatologist hinted that he might take me off mtx if my hair got too bad.   The other horrible thing for me and maybe you too as it's only been 5 weeks, is that the mtx isn't even working for the pain yet, so all this crap for nothing so far. 

Everyone says it just takes time to work it all out and almost everybody seems to end up on a good combo that works for them, in the end.  I feel so sorry for you two with younger children, that must be tough tough tough.  I am 39 and mine are bigger and my teenage daughter said 'a wig would be cool, you could have any type of hair you want!' :-)  :-(  !!

Hi Katie.

im so sorry to hear about your hair. The methotrexate can affect your hair of course though I've heard different people say different things with some affected and others not so. It's rotten if your doctor and nurse are not responding too. Re hair, my advice is to take extra care of what hair you have. My mums hairdresser has been very good, helping her with different cuts and styles which isn't easy for an 84 year old who has had a lifelong perm and traditional weekly set and had thin hair anyway! She now has no perm, ever thinning hair and has bought herself a couple of trendy wigs which she sometimes wears. I hope things go well for you. Best wishes.

paula

I've always had my hair permed twice a year up until last year, when I got diagnosed with RA. I very had my hair trimmed once, due to it falling out. I only wash my hair 1 to one and half weeks. As due to large chunks of hair falling out. Am too on self injecting methotrexate, hydroxycholoquine and folic acid. Due to have cimzia bt on hold. Combing my hair us no no, so I use my fingers to untangle it not my comb😢