Methotrexate : Has anyone experienced hair loss or hair... - NRAS

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Methotrexate

GrannyTWest profile image
33 Replies

Has anyone experienced hair loss or hair thinning whilst taking methotrexate? If so do you have advice about how to stop it getting steadily worse? What can I do to help myself? I've been on methotrexate for a year.

33 Replies
KittyJ profile image
KittyJ

it’s a common side effect which can diminish the longer you are on it but not always. Some people use biotin but I didn’t find that mad e any difference, If you use the search box and filter for NRAS then lots of posts regarding this will come up as it’s a regular question 😊

GrannyTWest profile image
GrannyTWest in reply to KittyJ

Thank you KittyJ, I'll do that.

jarujuda profile image
jarujuda

hi, I have been on methotrexate for 3years I take folic acid and hair loss has stopped, make sure you get advice about dosage as I take it 4 times a week 😊

GrannyTWest profile image
GrannyTWest in reply to jarujuda

Thank you jarujuda, good to know the thinning could stabilise

lindyloo2018 profile image
lindyloo2018 in reply to jarujuda

hi please tell me what dosage folic acid you use . many thanks

Maureengibson profile image
Maureengibson

I’ve been on MTX 6yrs, and my hair is finer. Thankfully I have loads of hair, so it’s not noticeable. Except that it’s more difficult to stay in style. It stabilised after a whiie, but has never returned to the thickness I had.

GrannyTWest profile image
GrannyTWest in reply to Maureengibson

Thanks for this Maureengibson

Sheila_G profile image
Sheila_G

I have been on mxt for 20 years. My hair thinned quite a lot at the beginning but eventuallt settled down.

GrannyTWest profile image
GrannyTWest in reply to Sheila_G

Thanks for this Sheila_G, good to know.

Liveindevon profile image
Liveindevon

oh, yes, I'm afraid so. I wore turbans and other headgear for 9 months last year because my hair got so sparse when I was having mtx injections. But it had happened years ago when I was given mtx tablets. I was younger then and made a fuss and was moved to leflunamide, which wasn't so bad.

Last year I used olaplex shampoo etc and took collagen powder and biotin gummies ( both from Amazon). As the mtx wasn't working I was moved to a biosimilar 8 months ago and now I have enough hair to dispense with the headgear

. I have to say, none of the medics took the slightest notice of my distress at the hair loss. I think it's partly ageism - why is she worried about that at her age when we're trying to cure her illness? - I was only moved off mtx as it wasn't working at all.

Sorry this isn't better news but when I was losing hair I tried to find out if it happened to others as I was told 'it's very rare'

GrannyTWest profile image
GrannyTWest in reply to Liveindevon

Thanks for this Liveindevon, I’m finding out that it is a quite common side effect, I’m grateful to hear your story.

Esmereld profile image
Esmereld

yes. Increased folic acid to six times a week and after about six weeks I’m back to normal. I hope you get sorted.

GrannyTWest profile image
GrannyTWest in reply to Esmereld

Thank you Edmereld, I will speak to my consultant.

flowerlover profile image
flowerlover

I don't think there can be any doubt that it causes hair loss even though we're told it's 'very rare'. I have taken 20mg Meth on Tuesdays since 2019 & experienced large amounts of hair fall for months. It did settle but occasionally get a spell of it if stressed or ill.Recently I had a return of it with a vengeance! I spoke with my rheumy & he was quite happy to do as I suggested take folic acid every day instead of just the following day after meth. He made a mistake & said to take the same dose - 5mg every day but meth day.

The hair loss stopped & the mouth sores stopped within a few days! But I should have been taking a half dose every day & my local Drs pharmacy phoned to tell me. I think I lose a little more than I should but it's so much better that I'm happy with that.

I'm sure they think we shouldn't worry about a 'silly thing' like hair loss - but they're often men & they face that possibility all their lives!

GrannyTWest profile image
GrannyTWest in reply to flowerlover

Thank you flowerlover. Interesting stuff.

lindyloo2018 profile image
lindyloo2018 in reply to flowerlover

Hi

I have been told by RA cons to take 5mg folic acid for 6 days the same, to stop mouth problems caused by mtx. currently taking 10mg weekly, so now swapping to 5mg for 6 days except mtx day.ly ... is that 5mg daily dosage correct ? what should it be ?

KittyJ profile image
KittyJ in reply to lindyloo2018

I’ve been on 5mg six days a week since being on mtx, I think that’s the dose we all take in the Uk, but some take it less days.

greynot profile image
greynot in reply to lindyloo2018

I am prescribed 20mg mtx weekly, and 5mg folic acid on the other 6 days. I was worked up to this in 2019 and have been on this regime for 3 years and it works (so far 🤞)

medway-lady profile image
medway-lady

I had horrific loss and felt like I'd been set on fire starting in my tummy and spreading all over. So I took one wash loss to see RA consultant and he stopped it as some are hypersensitive to it and there are other medications which work. I changed to LEF and it was great for many years.

CagneysMum profile image
CagneysMum

Biotin worked for me to stop hair loss, along side 5mg folic acid 6 days a week. It took 6-8 months to stop the hair loss, and I stopped taking biotin altogether after 12 months. Instead I then started taking marine collagen powder which has thickened my hair back up … my hairdresser cannot believe the difference it has made. I stir a heaped spoonful into a coffee once a day.

I hope you find something that works for you, it’s so destabilising and knocks your confidence .., as if the condition itself is not enough !

Amandaazz profile image
Amandaazz

Mines been gradual thinning (but not that bad), but I am also on hrt, so it could also be that too! I've been on methotrexate for a year. My Rheumy consultant has suggested I go up to 6 x 5mg of folic acid per week. However, I am doing 4 x per week and taking a multivitamin with folic acid in it the other 2 days per week, just to give an extra boost of vitamins too. I have also changed my shampoo to a hair repair shampoo (Treseme) in the last 3-4 weeks and that has definitely made a difference to the condition of it.

greynot profile image
greynot

Yes to hair loss (20mg mtx weekly with 5 mg folic acid on the other 6 days, for the last 3 years). It has also made my hair more straw like with the result that it looks like it has more volume for what I do have!I have always had long hair, and still do, tho I've taken a coupla inches of the worst ends off. I've been taking biotin daily since Oct but I probably need 9 month's growth to tell how well that's working. So far all I can say is it might be!

Happy5 profile image
Happy5

Yes my hair is finer and thinner though hairdressers tell me I have thick hair ! Lol as had twice the thickness of hair I do now.

As well as the other advice if you're brave enough I do a last hair rinse under the shower in cold water.

😊

nomoreheels profile image
nomoreheels

As you'll have gathered it is quite a common side effect, although the disease itself can also cause hair loss or thinning too. Looking back on your history you appear to have had this problem before though so maybe you're that but more susceptible?

The cause with MTX & some other meds we take for RD's is the way it works. In order to attempt to slow down the disease it inhibits cell growth, which can damage hair follicles & stop growth, the nails too. This is why we supplement with folic acid, vitamin B9, as MTX takes from our natural folate store, important in healthy cells, so we're replenishing it. I had hair loss in the early days of MTX & my 1 x 5 mg folic was increased to 2. It was only really me & my hairdresser who noticed the thinning but a shorter cut needing less styling & product help a lot. I only really have it now if I have a dose increase & then it's not for long. Nowadays I take 5 mg folic acid 6 days, not MTX day. My previously fine hair has changed texture & is positively curly nowadays!

You could try the products suggested but, personally, I would ask if your folic acid could be increased to max dose first before I spent money, like with me it may be all that's needed. I hope so anyway.

Angjoplin profile image
Angjoplin

My hair is terribly thin to start with and all the drugs make it worse. As others have said make sure you're taking your folic acid. Also I find using texturising spray helps my hair. It stops what I have going flat. There a lot on the market.

ABwn profile image
ABwn

My rheum doctor put me on folic acid. It stopped the hair falling out. Have you told your doctor what's happening?

GrannyTWest profile image
GrannyTWest in reply to ABwn

I have told my consultant but I haven't mentioned that I am concerned.

ABwn profile image
ABwn in reply to GrannyTWest

Probably best to let them know. Good luck

AZTerritory profile image
AZTerritory

Sadly, yes, a year on MTX and about 30% of my hair is gone. Dermatologist said try Rogaine, but I checked on that and supposedly it will not work for this type of hair loss as long as we are on the MTX (or similar type of 'chemo' drug). I've found the new hair that grows in is very thin and wispy vs. the sturdy almost wiry grey I had before. It is discouraging, but I'm having to balance it out as a cost of treatment. Rheumy wanted to switch me to Humira as the MTX is not well controlling my uveitis, but here in the USA the insurance companies/Medicare rule the day and it was denied, even after escalating the appeal 3 times up the ladder. Not an optimal situation. I do hope we can find some answers for this, this is a great forum.

GrannyTWest profile image
GrannyTWest in reply to AZTerritory

Thank you for this AZTerritory.

Wannabeabago profile image
Wannabeabago

Yep, got a blood test and my folate levels were too low so I increased my folic acid dose and it’s slowed a lot.

Poshcards profile image
Poshcards

if you also take folic acid every day except day of metho, it will stop it getting any worse, but it didn't thicken mine back up x

virtualreality profile image
virtualreality

Yes absolutely - same here. I had significant hair loss when the RA was first developing and again when I started on methotrexate, and ended up losing about half of my hair in the first year. 

Luckily my consultant prescribed folic acid 5mg six days a week right from the start which probably helped to slow it down. I also take a vitamin B complex, sometimes extra biotin (vitamin B7), and iron supplements because my iron tends to be on the low side which can cause hair loss too. Another thing has been washing my hair less often which apparently can help. I now wash it maybe twice a week instead of every other day so perhaps that’s reducing the damage - I’ve read that hair is at its most fragile when wet. 

I don’t know if this is also something that affects you, but as well as losing hair the condition of mine really nosedived too - it felt really dry and and hard - like straw really. I’ve found some olaplex hair care products really helpful for improving the condition, especially number 3 (the pre-wash treatment). Olaplex is pretty expensive unfortunately, at least to my mind, but I’ve found it doesn’t take much to have a beneficial effect and you don’t need to use it every time you wash. 

It’s over a year since I started on methotrexate now, and my hair has improved a lot. I’d say most or all of he hair that fell out is growing back, but it’s only several inches long at the moment so it’s formed a kind of layer as it grows down. More greys with the re-growth, and it does seem to be more fragile and prone to breakage still so I use heat on it as little as possible. I really hope you find a few strategies that help for you, fingers crossed. 

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