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

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Methotrexate hair loss

Dibbers profile image
44 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 :(

44 Replies
oldtimer profile image
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...

Dibbers profile image
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🤞

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

Dibbers profile image
Dibbers in reply to

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?

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.

Dibbers profile image
Dibbers in reply to

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 ☺️

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

Nanna71 profile image
Nanna71 in reply to

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.

in reply to

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

medway-lady profile image
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

Dibbers profile image
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

medway-lady profile image
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.

Hessie5 profile image
Hessie5

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

Dibbers profile image
Dibbers

Thank you Hessie ☺️ I will look in to it x

Jesnaskah profile image
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.

Dibbers profile image
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

Jesnaskah profile image
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.

Mickymoo profile image
Mickymoo in reply to Jesnaskah

Hi jesnaskah,

Can I ask if by now the minoxidl has helped. I was on methotrexate and my hairline around the front now has extreme thinning and bald spots. I was told within 4 months of stopping methotrexate the hair would grow back, but that was 10 months ago and it is getting worse. I have minoxidl here and wondered do you recommend using it? Has it helped your hair grow any? X

Jesnaskah profile image
Jesnaskah in reply to Mickymoo

Hi Mickymoo,

I'm soo sorry that your hair continues to fall out, I KNOW how horrible it is! Let's see, I was diagnosed in July 2017 and was on MTX for only 3 months, then quit. My hair was still falling out like crazy for the next year and a half. I kept assuming it was Telogen Effluvium, and told myself to keep patient, meanwhile my hair thinned out so badly! I saw a hair loss doctor who specializes in hair transplant (not that I'm a candidate) but I thought he could help me figure out WHY I'm still losing my hair. He checked out my scalp, healthy. He checked the hairs that fell out while there, healthy, no breakage. He said it probably is TE or Female pattern hairloss...which I personally don't agree bc I'm in my 30s and that would've started 15yrs ago. Either way, he told me to start minoxidil right away to try to break the hair loss cycle. So as of March, this year, I've been using it everyday 2x/day. I have seen a significant improvement. I used to never wear my hair down, now I can. I'm not as embarrassed anymore. I don't think I'll ever get my former full hair glory, but AT LEAST I can work with what I've got now!

I do suggest asking your doctor before using it, as it can lower blood pressure and if you use too much, I noticed my heart would beat rapidly. I recommend the dropper vs the foam. It's just easier to control, and apply it everywhere on your scalp. Wear gloves bc this stuff can make you grow hair in unwanted and most unexpected places! Which is what deterred me from using it way back in 2017...ugg I may have saved my hair if I just used it from the beginning.

The hair doctor also suggested PRP treatments to the scalp and stem cell. Both of which I personally won't do for my own reasons. But I did want to give you all the possible options out there.

Lastly, look up a 0.25 dermaroller online and use it in conjunction with the minoxidil. You can roll your scalp either before or after application. There have been studies that show this makes a huge difference! It's time consuming, and you need to be careful not to pull out your hair, but even adding this in once in a while, should really help. Make sure you sanitize it after. And let it air dry.

Be patient. You should notice a difference in about 3-6 months. You will notice those spots in the front of your hairline fill up sooner!

Oh! One more thing. I have also been doing LLLT treatments. I bought a laser cap from a site called iRestore. Not sure if it's helping, but it's so harmless that I don't mind using it, just in case it does help.

I hope all this info proves helpful. I wanted to be thorough so you can make an informed decision. Feel free to reach out if you need anything!

Good luck ❤️

Mickymoo profile image
Mickymoo in reply to Jesnaskah

Thanks for the info. I saw my dermatologist who originally thought it was the methotrexate causing the hairloss but after months of not taking methotrexate it still hadn't grown back. She then too said it was female pattern baldness, which I don't believe either. My mother has a full head of hair at aged 67 as does my sister who's 39. It's interesting about the heart and blood pressure though. I have been told last month I may have heart failure , and until tests are completed I know no more than that. I have a cardiologists appointment at the end of November so I will ask him if it is safe for me to use. Ile hold off til then. What percentage is your minoxidl? I fought to get mine on prescription and it is the male formula I was given which is 5%. I hope I can start using it as the hairloss around the front of hairline is embarrassing. My hairline also seems to be receding too. Thanks for replying xx

Jesnaskah profile image
Jesnaskah in reply to Mickymoo

The hair doc I saw created his own concoction of 8% minoxidil, retin-a, even topical finasteride, and one more ingredient, I think.

But after 2 weeks, it was actually increasing my joint pain (I think it was the finasteride), so I threw it out and bought woman's Rogaine 2%. I would've used the men's 5% but it makes my hair oily/greasy.

Yes, it is wise to ask your cardiologist before starting it.

There was a point where I was wearing wigs. Maybe you can look into that to hold you over, especially since summer is over and it will cool down. It's definitely easier/more comfortable to wear wigs when it's cold out. Or look into "halo extensions." I personally like the Hidden Crown brand. It's a mechanism that doesn't damage or pull on your hair

CagneysMum profile image
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.

Dibbers profile image
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

CagneysMum profile image
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

Nuttyshirlz profile image
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. 🙂

Dibbers profile image
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 😟

mrdiggs profile image
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 !!

Dibbers profile image
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.

Nuttyshirlz profile image
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

MissMinto profile image
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.

Dibbers profile image
Dibbers in reply to MissMinto

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

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

Dibbers profile image
Dibbers in reply to

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

QAGS profile image
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

Dibbers profile image
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

Suziepmama profile image
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

Dibbers profile image
Dibbers in reply to Suziepmama

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

Midwife1986 profile image
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.

Dibbers profile image
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

Elle_bee123 profile image
Elle_bee123

Hi Dibbers,

Came across this post and thread after lots of obsessive searching and digging because I was given one single dose of MTX back in May and my hair has been falling out in clumps for six weeks now. I barely have any left.

Just wondering if you got answers or solutions in your own journey?

Dibbers profile image
Dibbers in reply to Elle_bee123

Hi, I was on MTX for 6 months but had to stop because of hair loss and it wasn’t working for me. Within a few months the shedding stopped and in time my hair started to grow and look thicker. I was moved on to sulfasalazine, max dose with no further hair loss until I added Imraldi in to the mix and it’s falling out more than ever. Honestly I could cry! Imraldi was working really well for me but it also made me feel very sick so I’ve had to stop. I’m still shedding hair but hope it will slow down in time and I’m due to start a new biologic in a few weeks. My hair is so thin now I can’t do anything with it. I’ve taken biotin every day for months and take folic acid every day. I’m sorry I haven’t got anything more positive to say and of course, we all react differently but I hope your journey has a better outcome.

Elle_bee123 profile image
Elle_bee123 in reply to Dibbers

Thank you so much for responding. I’m so sorry this has happened to you. I hate it so much because you really do lose all confidence and ability to think about anything else. How long after the MTX did your hair stop shedding? Mine is daily like even running my hand through my hair brings a handful out, and hair washing is simply terrifying!The biotin and folic acid is doing nothing for me so far, neither are the endless vitamins!

Dibbers profile image
Dibbers in reply to Elle_bee123

It was probably about 8-10 weeks but it did stop. MTX didn’t work for me so it was a no brainer stopping it and my rheumatologist agreed. It’s a case of hopefully finding something that works with side effects you can deal with. I think this time is worse as, as you say, I’m scared to wash my hair or try to brush it and even putting it in a clip feels like it’s pulling it out. Does MTX work for you? I’ve seen messages on here where people persevere and eventually the shedding stops. It all seems so unfair when we have so many other awful things to deal with x

Elle_bee123 profile image
Elle_bee123

It did work but like you say I stopped it in June and my hair is still falling out more than ever, just so disheartening and same as you I struggle with even clipping it up as it feels like it’s pulling more out. All we can do is keep trying and stay hopeful x

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