Methotrexate and hair loss: I have been... - LUPUS UK

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Methotrexate and hair loss

Quuen profile image
13 Replies

I have been experiencing severe hair loss since starting methotrexate and I'm only on 12.5mg. My dermatologist suggested to wear wigs and didn't even look at my scalp. I have never worn wigs before and was no guidance or any empathy into hearing this news. She then put in the letter after the consultation that I had relaxed my hair which I find very ignorant of her as I specifically said to her that my hair had been cold blowdried so she could see my scalp better (I have curly afro hair). Over the last month, my hair has become dry, brittle and unable to absorb/hold any moisture at all 😔 any hair care tips would be appreciated. I cry everyday looking in the mirror at an inferior self reflection sometimes wondering who is staring back at me #FULUPUS

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Quuen profile image
Quuen
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13 Replies
PMRpro profile image
PMRpro

Were you also given folic acid to take alongside the methotrexate? Were you not given an introduction to using methotrexate? They should have told you all this sort of thing before you agreed to take it.

Hair loss is a common side effect of MTX, it attacks quickly dividing cells and that includes hair. Folic acid is given to reduce the unpleasant side effects and many patients take 5mg every day except the MTX day. It may help the hair loss but there are no guarantees.

You could make a complaint about the way the dermy related to you - or rather didn't. The hospital has a service called PALS, Patient Advice and Liaison Service. They should be able to help you get some help, possibly get to see a different doctor who will be kinder. And do mention the error in the letter - not acceptable but it happens a lot. Especially when you have a doctor who doesn't listen properly to you.

Good luck

Quuen profile image
Quuen in reply toPMRpro

Only nausea and stomach pains were really highlighted by the dermatologist and she printed off the NHS page about methotrexate to take away and read at home. When I questioned about hair loss and fertility damage, I was just urged that I need the medication to control the other symptoms and then worry about those things later as they are not really a problem. I have been taking the folic acid everyday so can't say it's helping with this.

I think I will be stopping this medication if this is the result. My other symptoms haven't changed very much in the few months I've been taking them and I'm getting more symptoms because of side effects.

Thank you. I will be contacting PALS to complain and hopefully change dermatologist

PMRpro profile image
PMRpro in reply toQuuen

MTX can take up to 6 months to show an effect in anything. MTX can be a really unpleasant medication to take but doctors seem to think it is well tolerated by most patients. It is used a lot in rheumatology and a study found that while most rheumies thought it was well tolerated and effective, a third of patients stopped taking it because of intolerable adverse effects, a third stopped because it didn't work at all and a third said it was effective and tolerable. Which somehow, doesn't quite match does it!!

Quuen profile image
Quuen

That is all very contradicting evidence!!. I think we all have to do what's right for our bodies. What works for one won't work for all. Looking like a trial and error at this point to find what helps

Looplylady profile image
Looplylady

My hair really thinned & was a nightmare after 17 years I managed to come off mxt & my hair has got thicker but not back to normal yet, 7 years. Plantar 39 shampoo is good as it contains caffeine it costs about £10 give it try.Stay strong.

Quuen profile image
Quuen in reply toLooplylady

Thanks. I'll look into that.

Wytchylady profile image
Wytchylady

Hi. Have you been prescribed Folic Acid? I'm on 5mg a day except the day I take the Metoject jab. It helps a bit with the side effects of Methotrexate.I used Neutrogena 2 in 1 shampoo. It gives my hair a bit of body and shine. X

Quuen profile image
Quuen in reply toWytchylady

Hi. I've been taking folic acid 6 days a week since starting methotrexate and hair loss has gotten worse very quickly :(

Wytchylady profile image
Wytchylady in reply toQuuen

I use a heat protector spray when I dry my hair to protect what I have left and keep my hair short. My thinning hair and pink scalp look much worse when it's long and sparse.Did consider getting wigs but thought that might be worse for my scalp (psoriasis).

I've yet to find a fix for it so concentrate on keeping what I have in the best condition I can, no harsh treatment, no more hair colourants.

Quuen profile image
Quuen in reply toWytchylady

I've not been using any heat on my hair for the last 2 years and only using natural hair products. I started my hair care journey before I had my diagnosis. Since starting the methotrexate my hair will not retain any moisture. I literally blow dried it once on my appointment when I noticed there were more patches because I wanted to the dermatologist to see. Even though she didn't look and told me to wear wigs. I've lost almost half my hair in about 3 months. My hair was a nice should length before and now it's brittle and breaking and nothing seems to help. I have trier a wig because I literally wouldn't go out otherwise. They irritates my scalp so not so keen :(

Jakebordercollie profile image
Jakebordercollie

I’m on 20mg of methotrexate and have been on this for 2 years. Whilst hair is thinner than before, I do take folic acid everyday accept the day I take methotrexate and I believe that helps with the hair.

Quuen profile image
Quuen

Hi. I've been taking folic acid 6 days a week since starting methotrexate and hair loss has gotten worse very quickly the texture has changed and my scalp gets very inflamed. I've not been using any hear and only natural hair products and still My hair will not retain any moisture

Mandymo2 profile image
Mandymo2 in reply toQuuen

Hi I am on week 5. 15 methotrexate and only 1 5mg folic acid 48 hrs after and have noticed a good lot of hairloss. I ordered biotin and collagen and my own folic acid tablets this week and I am hoping that will stop the fall out. If not I will be stopping the mtx. I do understand how bad you feel as I went through nearly full hairloss after an illness a couple of years ago. But it did come back after. Xx

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