Mtx hair loss

[Fluffontoast]

I've been on Methotrexate for about 3 months and my hair is now falling out in clumps each day. Does anyone have experience of this and did it slow down or lead to baldness? Are there other drugs that don't cause hair thinning? Would it grow back if I stopped the meds?

[medway-lady]

Yes I had extreme hair loss plus it felt like I was being set on fire inside. Very nasty so it was stopped.My hair regrew and LEF worked well with no issues for many years. I was told hypersensitive it’s not just a normal side effect. My Consultant was very good and saw the effect straight away. Increasing the Folic Acid made no difference although I did try that too. I only took the MTX for about 3 months and it’s the only medication that had that effect on me.

[Nana-8 in reply to medway-lady]

When I got off Leflunomide I had mouth tissue issues. Hope you don’t.

[medway-lady in reply to Nana-8]

It got stopped about 6 years ago after an AKI and although used in transplants they said better with AZA and then 3 years ago Etanercept added then stopped for abatercept and now back on Etanercept. LEF was brilliant and worked extremely well. I enjoyed remission for years and the AKI wasn't related to LEF but the decision was made although my Nephrologist said he could overrule it. It's all ok at the moment so fingers crossed for the future.

[Fluffontoast in reply to medway-lady]

Glad it regrew. Yes I'm feeling quite hot compared to normal. I thought my HRT had become less effective or something but maybe its the MTX.

[medway-lady in reply to Fluffontoast]

It really was awful the heat started in tummy then spread totally different from a flush. It’s hard to describe but being set alight is as close as I can get it. I was told hypersensitive even got breathless with the heat. Not panic like but like my throat was burning.

[hazelcats]

Oh Fluff sorry you have such a distressing side effect. I would 100% speak to the rheumy nurses.My hair does seem a little thinner atm, but that may be because my testosterone levels were down ( used as part of hrt ) so I have upped that a little.

Get in touch with the nurses. X

[Fluffontoast in reply to hazelcats]

Ok catz will do! It's a bit scary!

[hazelcats]

Its easy (for me anyway ) to blame hormones\hrt\menopause on most symptoms we have, but for hair to be coming out in clumps is awful and definitely needs advice. Good luck, thinking of you. X

[Runrig01]

I suffered hair thinning when I started MTX. I have more hair by cubic cm, than most, so you don’t notice it. It’s just that it doesn’t stay in style like it used to. It did settle down eventually. I take 25mg MTX, and 5mg folic acid 6 days a week. Been on it for 8yr now. Speak to your rheumatologist and see what they suggest.

[Darciedoodles]

I suffered hair loss and my hair is very thin now they stopped Mtx. 9 weeks ago due to platelets low but no change to hair just yet .

I’ve ordered reverse life collagen which arrived last night to try fix my hair skin and nails. . There seems to be side effects to all of the drugs associated with RA but each person different. Talk to your rheumatologist they should guide you Hope they resolve it for you .

[Fluffontoast]

Glad it settled down, maybe mine will too. I'll contact rheumy nurse.

[BMCV]

Mine definitely fell out in small clumps when I started on MTX so I talked to my consultant and he prescribed Folinic acid on top of the folic, once a week and that definitely helped me. Hair came back

[Wedgwood123 in reply to BMCV]

mine fell out and in any case it wasn't working so my consultant changed my drug

[CagneysMum]

When I started MTX my hair didn’t come out in clumps but the brush would be full every time I washed and styled my hair. My hairdresser noticed a big difference and had to cut my hair more creatively to avoid it being too noticeable.

I found that folic acid 6 times a week and a supplement called Biotin (recommended by my RA nurse) stopped the hair loss over a few months and new hair grew back. I continued to take it for 18 months or so and then switched to a marine collagen powder supplement instead which I still take 3 years on. Hair, nails and eyebrows all good and still using MTX.

Discuss options with your RA team and see what they suggest ? Good luck x

[Happy5]

When I first developed RA masses of my hair came out . MTX has thinned my hair but I have enough for the hair dresser to do summat with.

I use Biotin shampoo and conditioner (from Superdrug) helps fluff it up. I also use cold water for last bit of hair rinse.

Sounds in your case more drastic than me, I'd discuss with your RA nurse see what they suggest?

[Flipper12345yellow]

Hi, I had this and my hair turned white. I was told to take folic acid tablet for 5 days a week but not on methotrexate day and this helped slightly but eventually I decided to stop methotrexate.

[LillyBeagle]

Yes, I started with hair loss after starting mtx some years ago, but was put on folic acid 3 times a week and everything seems to be ok now.

[HGCCNM]

Yes, I started losing an alarming amount of hair (palm-size ball in brush and shower daily!) immediately after starting methotrexate. I added folinic acid and biotin and to my daily folic acid. I don’t know if it was that or just time, but the hair loss mostly stopped after a few months. And since staring the mtx, my hair turned super curly!

[Fluffontoast]

Thanks so much for everyone's advice!

[K_Raven]

I’m sorry that you are going through this. Your doctor should have prescribed you 1mg of folic acid daily with your methotrexate rx to prevent this very thing from happening. I also “over-supplement” with over the counter folic acid because I am very vain about my hair and protective of my physical energy. I encourage you to request your doctor to prescribe you 1 mg of Folic acid and to start taking some otc folic acid to catch up to what has been depleted over the past three months. Good luck.

[Fluffontoast in reply to K_Raven]

Hi, K raven, I'm prescribed 5mg folic a day except on Mtx day. The nurse said I shouldn't take more but do you think that's not enough?

[K_Raven in reply to Fluffontoast]

Hi Fluffontoast, if I were experiencing your symptoms, I would advocate for a review of my protocol if no folic acid on Mtx day, and the loss of my hair; and question the level of the mtx dose and if it can be reduced. For any medication we want to be on the lowest serviceable dose to manage symptoms. Mtx is similar to chemotherapy and has similar side effects, including hair loss. “Do you need to be on your current dose?” Is a question to ask your doctor. You could ask to titrating down for a month, supervised and see how your RA symptoms respond. Maybe your body is telling you that Mtx is too high. Either way, that is a big side effect to have with 5 mg of folic acid. Also ask, why not on Mtx day. Clarify that rationale to be sure that is not working against your hair retention as well. Best wishes to you.