On methotrexate my long blonde hair is falling out in bunches 😳😭😩

[Shelly1969]

PLEASE PLEASE HELP!! I’m so upset I’m losing my hair in bunches!!!!!

I was diagnosed with sero negative RA in January of this year On methotrexate since February come off for two weeks because they gave me a dmar injection whilst I was on the methotrexate as my joints were swollen and stiff then ended up having an severe allergic reaction to the dmar taken off all meds/ put back on Methotrexate a couple of weeks after allergy settled was fine I’ve still had pains and swelling but not as bad then in the June this year ending up with diarrhoea for 3 weeks which made me extremely weak diarrhoea has finally settled down now but my hair is falling out in bunches a lot more than before someone PLEASE help I don’t want to lose my hair it’s the only thing I like on my body long blonde hair which has taken years to grow I know taking methotrexate has a side effect of this but does it slow down or stop coming out?

[helixhelix]

Very upsetting... Mine did thin to start with, but then it settled down after a few months and it's been fine since (8 years). But we are all different, so no one can guarantee what will happen to yours. Do you take the maximum amount of folic acid? As that can help. Talk to your rheumy nurses about it.

[Megs4]

Hi Shelly,

Try to discuss this with your doctor. Adding more Folic acid under the doctor’s instruction and/or slightly reducing the MTX may be workable, but only with your doctor’s advice. I experienced extra falling out of hair on 25mg of MTX. Adding 5mg Folic acid daily (except on the methotrexate day) and reducing the MTX to 20 mg stopped the hair falling. In any case, it was thinning and falling rather than “clumps” coming out, but I could tell. It thickens up again when drugs reduced. Is there a different BioDmard the doctor would try as well as a reduced dose of MTX? Adjustments and combinations are the key rather than all or nothing. Best of luck.

[Shelly1969 in reply to Megs4]

Thanks for your reply 🤗

Im 49 yrs Young not a pensioner yet even though my stupid body feels like an old women body my brain is saying get up and go do everything you can but it hurts so bad sometimes 😳.

I’m on 20mg of methotrexate a week and every day except “methotrexate day” on 5mg of folic acid but my hair is still falling out The Doctors have to be very careful with my medication as I’m allergic to so much especially any kind of Sulphonamide medication “Major Anaphylactic shock” which unfortunately I’ve experienced 3 times already now😩 Now I have to carry 2 Epi-Pens everywhere I go. I’m also allergic to all NSAIDs. So when it comes to rub on gel pain relief I use stuff called Musselflex Gel which does help with some of the swelling and takes the edge of the pain in my joints.

[Nsmith13]

Yes it does and it's so distressing It does go thinner as drugs slow things down hair follicles included so it just doesn't feel as thick or not as good condition as your used to but it does mean drugs are working

[CarolyneJA]

My Rheum prescribed 5 mg folic acid DAILY. It has greatly slowed hair loss.

[Shelly1969 in reply to CarolyneJA]

I’m take 20mg methotrexate and 5mg folic acid everyday except methotrexate day but even though I’m taking the folic acid my hair is still falling out in bunches like a “full” paddle hair brush everyday and more I just touch it and it falls out continuously taking it off my shoulders arms clothes through out the day I’m so fed up now it’s really getting me down 😡😢

[Lomo1964]

Hi Shelly1969. Sorry to hear this. I am exactly the same I love my hair. Ask your rheumatologist if you can take biotin it’s for the hair xxx

[Gigi71]

Hi Shelly1969. I have very thick hair, my pride and joy so understand your distress. I started mtx 2 years ago, only 10mg as was on Humira, and it thinned considerably, after about 4 months it went back to normal. I had to stop mtx last October till January, again hair loss its only just gone back to normal, thankfully, only on 7.5 mg but on folic acid 5 mg 6 days, 7 days when not on mtx, I have a folate deficiency. Just hoping your hair recovers too. All the best X

[Shelly1969 in reply to Gigi71]

Thank you for replying I’m going to speak to my RA doctor because it’s not a little it’s a lot big bunches 😩

[Gigi71 in reply to Shelly1969]

I felt mine was coming out in handfuls, also on the brush, clothes etc. Most upsetting when I washed it. We are all different so definately speak to your rheumy team. My mtx was reduced as it gave me dry eyes. I see the rheumy nurse on the 17th we are looking into my chronic cough at the moment in case mtx is the problem. I just wanted to say my hair has fully recovered now so with any luck yours will too. X

[Shelly1969 in reply to Gigi71]

I hope my hair grows back too I’m thinning out too much 😩 Good Luck on the 17th hope all goes well with you with the rheumy and you get your cough sorted out xx

[Gigi71 in reply to Shelly1969]

Thanks Shelly. I was happy on Azathioprine for many years until it was blamed for my small skin cancers. No more since stopping it. It's all trial and error. Good luck to you. X

[Shelly1969 in reply to Gigi71]

I’m glad it’s stopped now good luck for the future xx

[medway-lady]

I also had extreme hair loss no other side effects but hair came out in handfulls. So I showed it to RA consultant who stopped the MTX stariaght away. It was not the usual few strands but big patches which was not getting any less after 3 months. Once stopped all grew back normally and LEF has made no difference to hair at all.

[mamainacrowd]

I started the Methotrexate again two months ago with Humira and my long hair is falling out too. Recently read about adding Biotin to supplements. You might want to ask your doctor about that. I also take 5 mg. of folic acid daily. I am also planning a hair cut so hopefully it won't show as much. Best wishes!

[Hidden]

Sorry to hear this. Not nice for a lady to have her hair falling out. Although I am male I lost every hair on my body from the neck down and the hair on my head just stopped growing while on methotrexate and started thinning. I used to have my hair cut every three weeks but since RA diagnosed this year only once. Now off methotrexate as it was causing boils and sores all over my body.

I had a hair tidy yesterday but still nothing anywhere else, not even baby fluff. I guess that it all takes time for your body to settle down.

[Shelly1969]

I hope your hair grows back soon I’m seeing my RA nurse by the end of the month so I hope she can help x