Methotrexate hair loss: Hi everyone, I’m new on here... - NRAS

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Methotrexate hair loss

Dibbers
Dibbers
35 Replies

Hi everyone, I’m new on here and could really use some advice. I’ve had RA for about 8 years but only started treatment in the last few years as my symptoms progressed. I’ve been on Methotrexate for the last 6 months, 4 on 15mg and 2 on 25mg. My hair started to shed early on but has really started to fall out in handfuls in the last few months to the point that I am no longer able to stay on it. My rheumatologist has suggested I wait two months before trying another drug and gave me a shot to tie me over. I am continuing with Folic acid and take a biotin supplement every day but wondered if anyone could let me know if they have gone through the same and was there anything that particularly helped to stop the shedding? I’m desperate :(

35 Replies
oldestnewest
oldtimer

It can be difficult coming to terms with hair loss and the stress of worrying about it can make it worse! Usually if it's due to the effects of the inflammation, it improves when the disease is under control. After methotrexate, usually it gradually returns to normal as it leaves your system ( I know, that's going to a few months, but it will leave your system).

You might find this article helpful:

nhs.uk/conditions/hair-loss...

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Dibbers
Dibbers
in reply to oldtimer

Thank you 😊 I have read the nhs advice on your link and will speak to my GP about minoxidil on Thursday when I see him. Methotrexate didn’t work for me and my crp was higher than ever so I’m hoping it won’t take long to reverse🤞

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J1707

I too had hair thinning mainly on one side . I had my hair cut shorter to make it look thicker now I have grown my hair again and it’s not as thin but it’s not as thick as it was. I also had thinning of my eye brows again these have got better. It might just be just a temporary side effect. Old timer is right the more you stress about the worse it is. I know this is easier said than done. Give it a bit longer to see if things settle

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Dibbers
Dibbers
in reply to J1707

Thank you, I think you are both right with the stressing. I can’t stop thinking about it 😞 Was your hair loss due to methotrexate and if so, are you off it now for your hair to grown back?

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J1707
J1707
in reply to Dibbers

Yes my hair loss was due to methotrexate I’ve been on it for 3 years my hair loss was in the first 6 months. I’ve recently (3weeks)gone from 20 to 25 mg and I’ve started to loose hands full oh hair again but I think it will settle down again I’m taking biotin and vitamin D3 with vitamin K2 I hope this will make a difference. I’d rather this than the immobility pain and the dreaded fatigue I’ve had since February life has just passed by in a fog.

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Dibbers
Dibbers
in reply to J1707

I totally understand that and wish you well on the higher dose. Mtx didn’t work for me so it was a no brainer to come off it. I’m taking biotin and D3 but will look at K2 as not heard of that before. Thank you ☺️

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J1707
J1707
in reply to Dibbers

D3 is not absorbed properly without K2 only recently found out myself. Amazon sell a combined vitamin. Hope all goes well

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Nanna71
Nanna71
in reply to J1707

Yes, me too. Hair loss slowed to stopped but 6 weeks ago was upped MTX dose from 15 to 25 mgs. Actually nothing started again. Am also on sulfasalazine and prednisone. Weirdly, prednisone seems to be the only one of the three relieving the pain I get. This I say because I'm trying to taper off and the lower I get the more pain I have. There is suspected PMR on top of the RA so don't know what to think.

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Minty1972
Minty1972
in reply to J1707

You can have some of my head weed as it has to be cut short every three weeks.

Hoping that they will give me a haircut discount soon.

Maybe it has something to do with the stress caused by the stress of this crappy disease

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medway-lady

It happenned to me and now its just patience as I then went on Lefludamide after the two month break. It will regrow I did not last as long as you as I felt I was on fire and the hair loss was dramatic handfulls came out. So try not to worry as it was resolve itself. x

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Dibbers
Dibbers
in reply to medway-lady

Thank you ☺️ I wish I’d stopped earlier but it got worse very quickly. They have suggested I go on to Leflunomide after my break but concerned as hair loss is a bigger risk with this drug 🤦‍♀️ Hopefully by then I will feel more positive. Best wishes to you x

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medway-lady
medway-lady
in reply to Dibbers

LEF did not cause me any problems but Omeprazole did so make sure you get the blood tests done egularly. LEF changed my life by putting the RA into remisson for years. Take at night with a glass of water side effects soon wore off.

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Hessie5

Hi - I have started taken collagen powder (fish) - I feel it is helping me. Wishing you well with it. Hessie 😌

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Dibbers

Thank you Hessie ☺️ I will look in to it x

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Jesnaskah

Get on the minoxidil as quickly as possible... The sooner the better. I wish I had done it immediately as I was taking MTX, but I didn't.

I stopped MTX about 2-3 months in and the hairloss didn't end....I waited about 2 years until I got on minoxidil. I know the stress of the entire situation kept the hairloss going and that I now have chronic Telogen effluvium, but I kept hoping my body snaps out of it... It never did so I finally started minoxidil this last March. I could've probably saved 80% of my hair had I started 2.5 years ago. The progress is slow, but I see it helping. Good luck.

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Dibbers
Dibbers
in reply to Jesnaskah

Thank you ☺️ I’m going to speak to my GP about this onThursday before starting on it. TBH I don’t know anything about it. Hope yours progresses well x

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Jesnaskah
Jesnaskah
in reply to Dibbers

That's a good idea. As it can cause some side effects...I wish you the best! Losing my hair has been very traumatic for me.

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CagneysMum

Hi Dibbers. I started to lose a lot of hair using methotrexate (handfuls each time a brushed it) and my rheumatologist suggested trying Biotin. This made a dramatic difference after about 2-3 months and although I’m still on methotrexate my hair shedding is now down to a normal level and the hair I lost has started to grow back. The folic acid didn’t seem to make any difference at all whether I took 1 or 6 a week. To be honest I’m still not certain whether my body just needed time to adjust to the methotrexate or whether the improvement is just down to the Biotin? I know how upsetting it is to see your hair thinning, but it will grow back. Have you given yourself enough time to adjust ? Wishing you only the best.

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Dibbers
Dibbers
in reply to CagneysMum

Thank you ☺️ I’ve only been off Mtx for 2 weeks (it was not working after 6 months, two of those on 25mg so rheumatologist took me off). I’m continuing with folic acid 5mg a day as instructed moving to every other day from next week. I’ve been told it will take up to 3 months to stop the shedding but I can’t imagine I’ll have much left by then. I’ve been on high strength biotin less than a week so got a way to go yet. I’m pleased you are coming out the other side and continue to do well x

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CagneysMum
CagneysMum
in reply to Dibbers

Hope things improve for you soon. Losing hair just felt like a kick in the teeth on top of everything else. Xx

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Nuttyshirlz

Hi your not alone we all go through it. I’ve a very large post on it if you wanna read it. I had very thick long hair which was my pride but it does slow down to near normal once it’s in your system. My only tip is find a good hairdresser. 🙂

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Dibbers
Dibbers
in reply to Nuttyshirlz

Thank you ☺️ I’ve just read your post and replies. My hair is fine but always had lots of it until I had a really bad colour which ruined it. I had a really good cut and use Olaplex regularly and all was great ........ then they started me on methotrexate 😥 I have been putting it up as I can’t style it anymore (it’s sooo wispy) but perhaps it’s best to just leave it down. I notice your post was a year ago. How is your hair now and how long did it take for the shedding to stop? Once the shedding slows I think I’ll need to go short which I’m dreading 😟

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mrdiggs

HI D--------- HAVE BEEN ON MTX FOR ABOUT 7/8 YRS. AND I HAVE HAD THE SAME PROBLEM.MY HAIR IS NOW ABOUT 1/8 OF WHAT IT WAS AND I HAVE STARTED TO DEVELOP A BALD SPOT ON THE BACK CROWN OF MY HEAD. NOT AN EASY THING TO DEAL WITH AND NOT SURE WHAT CAN BE DONE ABOUT IT. MY DR. SAID IT WOULD COME BACK WHEN I STOPPED TAKING MTX BUT THAT IS NOT POSSIBLE AS I TRIED GOING OFF OF IT TWO TIMES AND HAD BAD FLARE UPS BOTH TIMES AND HAD TO GO BACK ON IT. IT WOULD APPEAR THAT SOME PEOPLE HAVE THIS PROBLEM AND SOME DON'T, I HAPPEN TO BE ONE OF THOSE THAT HAS A VERY STRONG REACTION TO THIS DRUG. I TOO TAKE FOLIC ACID EVERY DAY BUT THAT HAS NOT HELPED ME IN REGARDS TO HAIR LOSE.I WISH I COULD GIVE YOU BETTER NEWS BUT I'M AFRAID I CAN'T. I HAVEN'T TRIED ANY OTHER RA DRUGS SO HAVE NOTHING TO COMPARE IT TO.AT THE POINT I'M AT I STRONGLY DOUBT THAT ANY OF THIS HAIR WILL EVER COME BACK SO I'M GOING TO HAVE TO DEAL WITH THE PROBLEM AND MAYBE GO TO A WIG IF IT GETS ANY WORSE. IF YOU ARE COMING OFF OF THE MTX I WOULD THINK THAT GIVEN TIME YOU WILL SEE A VAST IMPROVEMENT IN YOUR HAIR AND EVENTUALLY GET BACK TO WHERE YOU WERE. I WISH YOU GREAT SUCCESS AND JUST BE PATIENT AND DON'T WORRY. CHIN UP !!

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Dibbers
Dibbers
in reply to mrdiggs

Thank you ☺️ I’m sorry to hear about your hair loss. I’m surprised you’re rheumatologist hasn’t tried you on another DMARD. Have you tried biotin or minoxidil? Both were recommended to me on this post.

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Nuttyshirlz

My photo on post was taken about two months ago it’s now fine and shoulder length and can’t really do much with it. It’sI no I’m probably going to have to go short too. But I’m still hanging onto my hair lol but still on same pills methx and sulfz But I also use Philip Kingsley which I get from Qvc and it seems to help but that could be my wishful thinking lol

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MissMinto

I've seen a range of hair products that specifies it's suitable for users of minoxidil - it won't let me post a photo in a reply box so I'll post it separately and hope everyone on this thread sees it.

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Dibbers
Dibbers
in reply to MissMinto

Thank you ☺️I’ve just seen your post and will have a look at it online x

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Apr69

Sorry to hear about your hair loss. Must admit, I'm so obsessed that I practically count all my hairs each morning!! My husband is a doctor and he maintains the hair loss is due to having a flare not necessarily the medication (although some meds will contribute). As soon as my last flare was under control, my hair did start to grow thicker again and generally look healthier. But I do take Biotin, just in case it helps.

Hopefully when your inflammation is under control, your hair will look thicker. Fingers crossed x

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Dibbers
Dibbers
in reply to Apr69

Thank you ☺️ I didn’t have a flare on mtx until the last week I was on it and my hair was falling out in handfuls by then. I’m on biotin and will look in to all the other suggestions on this post x

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QAGS

I have been on MXT for 2 years, 20mgm a week. I did worry about my hair, it was a massive worry too. My hair is finer, but thank goodness I still have it. When I started on MXT I immediately had it cut short, also stopped colouring it and went "au natural". I am 82. I wish you luck, this is a big deal for us ladies x

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Dibbers
Dibbers
in reply to QAGS

Thank you ☺️ I will get it cut soon and have also made the decision to go au natural! Best wishes to you x

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Suziepmama

Did the same thing. They doubled my folic acid . instead of 1 a day I take 1 in morning 1 at night every day

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Dibbers
Dibbers
in reply to Suziepmama

Thank you ☺️ What strength of Folic acid do you take? I take 5mg once a day.

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Midwife1986

Hi I had the same when I started on methotrexate 3yrs ago. Mind you I think the menopause didn’t help! It seems to have settled a bit but I use Mane and Tail shampoo which seems to make it look thicker. Previous to that I used Nioxin shampoo/ conditioner which also helped but trying the other for a change. Good luck.

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Dibbers
Dibbers
in reply to Midwife1986

Thank you ☺️I had read up on mane and tail and might give that a go. I’ll look into Nioxin too. Thanks x

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