Hello. I haven't posted on here for a long long time, but I'm hoping someone can answer a question for me. I have struggled with methotrexate hair loss for five years, which was depressingly much worsened by the addition of hydroxychloroquine for six months. I've just had a painful three month break from all meds and will see my Rheumy tomorrow. There is only a slight recovery from the hair loss as from past experience it takes around 6 months to see a difference and I can't wait that long. The plan is to restart the MTX injections and I know what's going to happen again. I was going to ask the doctor if I could try something else, but I've studied the NRAS medications leaflet and done some Googling, and it seems that all the meds have hair loss as a possible side effect. Has anyone who has hair loss from MTX and Hydroxy found a different RA drug that didn't cause hair loss? I have already failed with Sulphasalazine due to an allergic reaction. Many thanks.
Methotrexate Hair Loss: Hello. I haven't posted on... - NRAS
I didn't have hair loss on hydroxychloroquine. Sulphasalazine only lasted a couple of weeks before I gave up because of massive headaches.
Methotrexate made my hair fall out at an alarming rate. Because of this I stopped it. It also make me sick for a couple of days a week. The hair loss didn't slow up, and now on Leflumonide my hair is still coming out. It also has changed texture and breaks easily. I can't wear it down as is a real frizzy mess, with curly fly away bits. My hair has always been thick and straight.
Many thanks for your reply. Yes my hair becomes coarse and brittle (and wavy) and the new growth just snaps off in short bits that are all over my hands when I wash it. Unfortunately my hair was always very fine to start with. Over the past five years it has settled down for short periods and then started to shed again. The hydroxy definitely made things worse, although the two drugs together brought me remission from RA, and for a few months I felt I had my life back. My husband thinks I should just go back to that and buy a nice wig. I'm beginning to consider that option. I find the idea of Leflunomide quite scary as the side effects seem quite bad, and it stays in your system for up to 2 years.
Really sorry you are having such trouble with hair loss. With regards to leflunomide...I actually had no side effects at all with this drug. However, it didn't work. Some folks have marked weight loss, sadly this never happened with me. As with all drugs, works for some not others.
I gave up on the methotrexate. I haven't had hair loss on it, but my hair is now very curly! Methotrexate just made me feel terrible, and hasn't done much for the disease.
Hair loss is such a horrid thing to happen. I would ask your rheumatologist if there are other options.
It Changed the texture of mine too! It’s like the methotrexate sucked every bit of moisture or whatever is in the hair that makes it straight and shiny and made it very dry and very brittle. My long hair broke of around base of neck area. It also got very thin and could see bald patches anywhere I tried to part my hair. I stopped methotrexate 2 months ago and it seems it is Still doing it!
I had to stop the MTX because of hair loss but the LEF is great and has the left the hair alone and I am in remission. I have no side effects and it works extremely well.
Many thanks. I will have a chat with my Rheumy in the morning. I'm still undecided what to do. Good to know LEF works well for you and no side effects.
I was on lef and I lost half my hair, luckily I had tons of hair but it took almost nine months before it started growing back after I went off of it.
Snap me too I’m on methotrexate and sulfasalazine and six months ago had long really thick hair now it’s thin coarse and still dropping out ive spent a fortune trying different things and I’ve tried all sorts but I’m yet to find a miracle. I’ve also being on good old google and it seems to affect everyone on arthritis medication.
I also did a post on hair lose and quite a few ppl comment on having same problem.
We are all in same club.
So depressing isn't it? I'm still not sure whether to give it another try.
Yeah cause my hair always being my pride and joy but I’m not sure if it sulfasalazine doing it too. It’s a catch 22 thing do u live in pain or lose your hair. X
That's very true. I had remission with MTX combined with Hydroxy. Maybe I should have just stuck it out. I had hair loss with sulfasalazine too by the way, but couldn't stay on it for long because it destroyed my white blood cells.
Methotrexate was my worst drug ever, I had started on sulfasalzine which was my first and seemed great, later added Methotrexate and really struggled boils, mouth ulcers, hair loss, skin damage, ezcema, feeling so ill even though the joints were actually doing OK, I had to reduce working hours it was bad but took me ages to get heard and stop it twice they said just try another 3 months then I was offered injections which were worse for me not better.
Since changing I never looked back, I went on lefludamide and added embrel injections, i stayed on for 5+ years it was great v little side effects no hair loss unless on steroids as well, I had my life back.
Now im on abatacept and back on sulfasalzine after a nearly 3 year dip when embrel stopped working, but all is going well again.
Don't stick with Methotrexate when there are so many otherdrugs that may suit you better, it has be worth a try, worst result is you return to it having tried others!
I still take a list with me to appointments, as I always forget something and sometimes find many doctors/ nurse teams don't ask me what is really important to me, ( I was a nurse for 30+years) for me it was skin impact, your issue is important don't forget that
Thankyou so much that's very helpful advice. I tend to think 'better the devil you know' but you are right - I have nothing to lose in trying an alternative. I have my list ready for the morning!
Hi MazP! What type of issues have you had with your skin? I too am also on Methotrexate as well as Actemra and I have some skin issues as well. The Rhumy doctor didn’t think it was related to the medicine but to the RA. But I did notice that sometimes after taking the Methotrexate, usually within 48 hrs, I would break out in what looked like hives or welts. My skin would itch & burn, turn red & swell. Then after things calmed down my skin would turn dark brown and peel. It mostly happens on my chest and neck. It looks horrible! I also developed these open sores on my arms and legs that bleed and scab over. I’ve tried to search the internet to see if anyone else had experienced the same thing but to no avail. Your actually the first person I’ve come across that mentioned skin issues. Is there anything you have tried that helps with your skin issues?
Have you been put on folic acid along with the Methotrexate? I’ve heard that it’s supposed to minimize the side effects of Methotrexate.
Hi Suzie. Yes I have always taken folic acid. It was increased from 1 a week to 2 a week 6 months ago but didn't help the hair. My rheumy said that it doesn't help the hair but it does reduce stomach problems.
Yes, as soon as I started on Methotrexate tablets, then injection, given one folc acid tablet, to take once on a week, on different day to Methotrexate. I didnt really have any side effects I felt, but it was doing something to my liver! You cant win, it seems.
That's the thing Shamrockgirl. If it wasn't hair loss it would probably be something else! They say there is no such thing as a drug that doesn't have any side effects.
I was on methotrexate once a week and double folic acid 6 times a week and my hair fell out, it's took 18mnth to get enough decent growth after stopping methotrexate for a Bob. IV avoided drugs for a year but the agony is back now, IV been advised to give sulfasalazine a go, fingers crossed
Have you tried taking biotin I take it and my hair is fine x
Hi Lomo. I've heard of this and will look into it. Many thanks.
My Dr increased folic when she asked if I had hair loss. My hair dresser also suggested biotin and I believe it helps. When I stop taking it I notice more hair everywhere but when I stay on it 2 a day I see a marked difference in less hair in the sink, on my pillow case, on me. I believe it helps and its cheap enough at the pharmacy. It also helps the nails grow. My nails have always been thin and break a lot but they actually grow now.
Taking 3 folic a day and 2 biotin along w mtx once a week and hydroxy 1 a day.
Hi Angela 123
I was experiencing hair loss stomach cramps malaise on MTX my Rheumy increased my folic acid i now take 5mg 6 days a week and have found that the hair loss has minimised it has definitely made a difference. Maybe ask your Rheumy to increase the folic acid. Btw I had really fine hair and not very thick. The condition of my hair has definitely changed courser and getting wavy. Hope you can find something that works. Take care
Hi Angela, I too am on Methotrexate injections and suffer from hair loss, it doesn’t seem as bad as it used to be but still not nice. There is always a down side to every drug. I did have a lot of hair, my friends and husband say they can’t notice, but I can my hair feels so much thinner now. My nurse says you won’t go bald but hair will get thinner, it’s not much fun, Is it ?
I had hair loss/ thinning on MTX when on high dose. I’m now on low dose with biologic drugs and my hair has returned to normal thickness. I think it’s individual reaction as MTX is a cytotoxic drug
I was on Methotrexate last year when first diagnosed & didn’t notice my hair falling out but once I got on the Leflunomide I noticed it. I stopped the Leflunomide in February & started Xeljanz in April it’s not falling out like it was. I also just ordered a wig & will see what happens with the Xeljanz.
Methotrexate nor Leflunomide worked for me still had frequent flares. I’m also weening off the prednisone now, down to 3mg & I take 1mg of folic Acid daily.
Thank you Sassy. I was given the choice of switching to Leflunomide this morning and after discussions with the doctor decided against it. He didn't think hair loss would be an issue with leflunomide, but I've read so many people who have experienced it (and badly) and the diarrhoea side effect sounds horrible. I haven't heard of Xeljanz and will look it up. Meanwhile, I'm back on MTX injections. Best of luck with your treatment.
On mtx and hydroxy, have list at least half my hair. On folate 5mg/day and then rheumy addeded leucoverin. The leucoverin has slowed the hair loss down but I'm still losing my hair. I'm rather unhappy about it. And every time my rheumy ups the dosage of mtx, more hair loss!!! My hair is now so dry and is breaking off. Sad.
Hi, Angela. I’ve only been on METX for one month and my hair is already thinning. I’ve thought about a very short cut and a wig but I get a headache from wearing a hat and I don’t know if I could tolerate a wig everyday. I’m wondering if topicals like Rogaine help.
I think a good shampoo can help. Anything that makes the hair look thicker. I use Nioxin system 4. It doesn't stop the hair loss but it helps it look better. People don't really notice my thin hair, but of course, I do. I once tried a hair loss treatment, a serum, can't remember the name, but it made things worse.
Caffeine based hair treatment make it worse as stimulation of the blood vessels near hair follicles is meant to make hair grow but in the mean time it allows fine hair to fall, I tried this before starting again with my hair from a buzz cut as it was falling out in handfuls due to methotrexate
I am on mtx and hydroxychloroquine, I take folate and leucoverin to stop the hair loss. I also use biotin as a supplement and Rogaine for women. I dont think the Rogaine has helped, but im afraid to not use it. I have not tried biotin shampoo products. That is a good idea! I will purchase some today!
My hair thinned out considerably during my first several months on Methotrexate. But my mop was so darn thick (think Chaka Kahn), that I did not mind the loss too much.
But here's the GOOD news (and don't we all just hang on for the good news), over the past year, I have been slowing lowering my Methotrexate dose. I am down to a .4 weekly injection. (I also take a weekly 50 mg Enbrel dose, and 3 mg of pred daily. I am weaning off the pred, too.)
I feel pretty darn good most of the time these days. (Knock the heck out of some wood.) I do flare now and then, which is always a kick in the head, but hey...like everyone else, trying to figure out the best med combos and live as healthy as possible.
And thanks for asking this question, and more thanks to all who answered. This is a great group for sure.
Thankyou for your reply. I'm amazed so many people have responded to my question and the answers have all been so supportive and helpful. It would be good if I could lower the MTX dose at some point. So pleased to hear you are doing well on your drug combo, and good luck weaning off the Pred!
Thank you for your kind response. Upon reading my post, I realized that--Oh my gosh! I meant to say that my hair came BACK! Again, I wrestle with finding ways to calm my thick crazy curly mane. Yes! (I wrote the response this morning before my cup of joe. hahaha) Have a great weekend!
Thank you, Angela. I’ll look into the Nioxin.
I stopped methotrexate and folic acid 3weeks ago after using for almost 20 yrs. I can’t handle the hair loss anymore and frankly it hasn’t controlled my Psa that well. Working with rhuemy for 20 + yrs.
( I jokingly told my rhuemy I would rather be in a wheelchair than be bald!) I take Celebrex daily, inject cimzia bi monthly and use tramadol for pain. Gentle exercise , heat etc... as well.
It’s a paradigm shift... if I can’t feel good... then darn it, I’m determined to look fabulous! Ha...Take that autoimmune disease!
I've had the same exact issues with MTX. Stopped it after 2 months bc the hair loss was just so much and tragic.
Have you heard of xeljanz? It's a new biologic PILL that is taken once daily. It has been used "off label" to grow back hair for alopecia patients and even those with RA have noticed similar results when it comes to growing back hair. I haven't tried it yet. I'm going through my own turmoil, trying to decide what to do next, especially since I'm going through a pretty bad flare and weird skin rash and not really on any DMARDS currently. But I suggest you research xeljanz and talk to your rheumy and/or dermatologist about it.
Wishing you the best...
Thank you, I've made a note of Xeljanz. I've decided to go back on the mtx injections for the time being. We discussed leflunemide at my appointment but my previous rheumatologist was not keen on giving me that for some reason (I have a new rheumy now) and I'm wary of it's side effects. I hope you solve your own medication dilemma. It's a horrible thing having to choose between RA pain and the side effects of the drugs we need to take to treat it.
Yeap and why I am now on Xeljanze. My long shiny blond hair was destroyed by methotrexate. (Well it IS a chemo drug). Double dose of folic acid 2mg per day did nothing to stop the hair lose. Methotrexate also made it so dry and brittle half my hair broke off around base of neck! I stopped metotrexate 2 months ago and started xelzanze. Crossing fingers that my hair will recover. After reading many of these posts it seems hair will grow back after stopping methotrexate months later! Let’s hope the process will be speeded up with the xelzanze.
I have been off all dmards since Dec 2017, stayed on the Prednisone though until last Nov 2018. I decided I wanted it that way.
All the dmards I tried gave me ridiculous side effects that we're causing me to deal with new physical ailments, such an neuropathy. So, no thank you.
But I will tell you this, I am STILL losing my hair! It never let up! I honestly don't know how I have a hair on my head left. I'm guessing it's either mysteriously RA related, just like how my skin is constantly acting up for no good reason. Rashes, etc.
Or it's chronic Telogen efluvium, which I can see it being that. Because my onset was so incredibly traumatizing that I literally spent every min crying if not weeping. I had no idea what was transpiring with me. If only I had tried to control my emotions, I may not be dealing with as much currently.
I had hair loss with mtx as well, they stopped it a couple of months ago and it is not falling now but is still incredibly fragile. They popped my on Leflumonide which has done wonders for my RA, joint wise and mentally feel like my old seld, but unfortunately the side effects in my mouth and skin means I had to stop taking this week and I am cold turkey till they end of June
I would defo try the Leflumonide, even though it does stay in your system, it can be "washed" out if needs be.
I did some reading and asking questions and found that Jamaican black castor oil used with Rogaine helps promote regrowth. A friend told me about the Jamaican oil and I googled for info. Here is url if one article I found. wellnessmama.com/35706/cast...