Hair Loss

[Peep44]

When I started methotrexate I noticed the loss of hair almost straight away. It was everywhere - on my clothes, in my bed, plug hole, towels etc. I stopped methotrexate in the end because of this. It was also making me sick for two days a week. I had a month off D-mards and then began Leflumonide. My hair loss didn't slow down after stopping the Methotrexate. When I tie it back I have to twist the hair tie more times and it feels like less than half of what I used to have.

I wonder if it is now the Leflumonide causing the loss in place off the Methotrexate or whether it could be related to the prednisone I'm taking. I had a couple of months on the prednisone before the hair loss started so I didn't think it was that.

My hair is also in bad condition - frizzy and flying everywhere. It breaks easily. The only public hairstyle choice I have now is a pony tail. I don't want to have to stop another D--mard. I have already failed with plaquenil and sulphasalazine. Are there any more of this type of med left? I don't want to be bald at 44. Am I being silly?

[Nuttyshirlz]

Hiya

No your not silly I did a post a few months ago about the same thing. From feedback I saw it happens to most of us. I have long hair to my butt so I can tell how much I’ve lost.

I keep my up with hair clips has to cause less damage.

Sorry not much help but if you read my hair post you will see your not alone.

🙂

[Hidden]

I found leflunomide just as bad as methotrexate for causing hairloss. Unfortunately it wasn't even an effective Dmard for me either so I came off it. You're not being silly at all for worrying about your hair. I've just started taking biotin supplements as my hair has gone thin and frizzy again from being back on mtx 10mg injections. I wake up looking like a banshee! My hair just all sticks out everywhere. I can't even get a comb through it unless it's washed.

[Evaflo10s]

Hi. I’ve also had the same with the methoxetrate. I had very long thick hair and like you have just been scraping it back in a pony tail for the last 6 months ( putting more stress on the roots ) . Yesterday I decided to be brave and had seven inches cut off and the rest layered etc . It looks so much better and is easier to handle . Gave me a much needed confidence boost .

Not a choice for everybody obviously but better for the temporary me I am at the moment :).

Good luck !

[Peep44 in reply to Evaflo10s]

I've tried shortening the length and playing around with the layering. It just doesn't behave the way it used to. My hair dresser said it felt "gritty ".

[Evaflo10s in reply to Peep44]

I’m absolutely stumped by “gritty” ! 😁

The texture of mine does feels better now it’s been coloured too , it was very dry and coarse . Mine is totally silver ( grey) now though without dye .

Should have said I’m also on 5mg folic acid 6 days of the week too but I was low in folate and iron before I started mtx anyway .

[Peep44 in reply to Evaflo10s]

I don't know why I had the minimum recommended dosage for folic acid on methotrexate when my hair was falling out. It should have been more I suppose. I wonder if it would help me still, even though I'm not on the Methotrexate any more.

[Evaflo10s in reply to Peep44]

Certainly worth asking I think . Seems a comparatively easily rectified problem in this mess of disease and drugs 🤞

[Mmrr]

Fortunately I have very thick hair, but have still expierencied a bit of hair loss on several of the DMARDS I have been on. My hairdresser today reshaped a day styled my hair into a layered bob, which looks great and has given a feeling of full thick hair again. It is a wash and go style, soo hopefully easy to look after as I can't manage anything which needs care. I also had it lightly coloured which has added real healthy sheen. Lifted my spirits no end. Might be worth trying a new style.

[Nuttyshirlz in reply to Mmrr]

I had very thick long hair and now I’ve lost 3/4 of it in 6 months but has we all no most of Dmards have this problem of hair loss just when it happens think it’s a bit of shock. But getting used to it now it seems to be slowing down 🙂

[Carolsos]

When I went on mtx 4years ago I had problems with my hair, falling out a lot. When I wash it or wake up in the mornings. I have noticed am very thin in certain places on my head. It has slowed down a lot now. I have always had very thin hair so losing a lot of hair at the start was very daunting. But as it seems to have calmed down now.

Take care everyone.

Carol X

[medway-lady]

I had same with MTX but none on LEF, so how long ago did you stop the MTX as it might take a while to get out of the system. LEF takes a long time to get working so I'd contact your Rhumie to talk about this. LEF has put my RA into remission and works extremly well.

[Peep44 in reply to medway-lady]

Maybe 2 1/2 to 3 months ago I stopped Methotrexate. Hope it is just taking a while to recover.

[Mmrr]

Peep44, just a thought, folic acid helps reduce hairloss, not sure how much you take, but it might be worth asking about increasing the dosage.

[Peep44]

I don't take and folic acid. I might give it a try. Thanks.

[Mmrr in reply to Peep44]

That is odd not to be prescribed folic acid along with methotrexate, you need prescription strength, not the stuff you can buy over the counter. Check with your rheumatology support people, usually 5mgs week, but many of us are precribed 5mgs day, except on methotrexate day. It helps with other side effects too.

[vonniesims in reply to Mmrr]

Yes, I'm on 5mg six days a week, not Methotrexate day a always have been

[Mmrr in reply to vonniesims]

Vonniesims, sorry I meant to reply to Peep44

[Peep44 in reply to Mmrr]

Hi. I was on folic acid (5mg once a week) when I was taking methotrexate, but now I've been on Leflumonide for a couple of months.

[Nuttyshirlz in reply to Mmrr]

I thought everyone had folic acid when on Mtx I take mine 6 days a week but like everyone else not on mtx day x

[oldtimer]

Some of your hair loss may be due to your illness - if it started immediately it suggests that the damage to the hair follicles had started at around two to three months previously as the hair doesn't fall until the hair follicle has stopped growing for that sort of time. But if it's continuing at the same rate then it's likely to be the medication now - unless your disease is not controlled?

But it can be worrying and is often dismissed by the medical team, whereas it is part of your identity. So ask about what you can do about it and what alternatives for treatment are open to you. Have a look at the treatments pages on the NRAS website for more information so that you go prepared.

[Nuttyshirlz in reply to oldtimer]

Hi oldtimer

When I told my nurse other day all she said was I could reduce my sulfz and keep my mtx at it’s normal dose and see if makes a difference in 3 months. I’ve been losing mine 8 months now x

[Peep44 in reply to oldtimer]

Still haven't got on top of my "Inflammatory "process" which is now described as seronegative RA by the rheumy. Hydroxychloroquine was wonderful until I became allergic. So was 20mg of Prednisone!! My CRP was normal for the first time ever on 20mg. I need something to take over from the prednisone and not make.my hair fall out. What a journey to be on!

[LadyJan]

Hi peep44

I lost my hair on lef and also had the trots so came off it. Was also on mtx and still am at 12.5mg. my hair loss is better, and for a person with thin hair anyway I need to hold on to what I have. I guess these drugs have side effects that show different in each person, but hair loss is most common.

I take 5mg of folic each week.and am sure that helps.

It is all trial and error, which takes time, meanwhile vwe have to suffer til things sort themselves out. One person said on a reply way back. One size does not fit all. How true. I hope things improve, if not get back to those who know and can help. Women don't feel right if hair is not.... ladyjan mi

[Peep44 in reply to LadyJan]

I relied on my hair to hide my puffy prednisone neck, but now I can’t leave it down because it is a frizzy mess. On the plus side it is easier to tie up. A head full of thick heavy shiny hair is always a pain to tie up. Ratty brittle thin hair stays in place easier........

[Hidden]

That’s not good. I’ve been on mtx for just over 2 years now and haven’t really had any problem with hair loss. (Knock on wood ). Hope you can work something out 😄