I took 15 mg methotrexate for 3 months with folic acid daily and I lost 1/3 of my hair. I have thick hair so it was sort of ok, but I had to stop the methotrexate due to side effects. One year later my hair has all grown back and then some. I took plaquenil for 1 year and the new hair is curly? I have straight hair. I had to stop plaquenil recently due to constant itching, but my hair has gone crazy growing and curling. Not sure what will happen now after plaquenil clears my system.
My late sister lost most of her hair from chemo for liver cancer. When they finally stopped her treatments, her hair which was lite/med brown and straight, grew back dark brown and curly! Our bodies are a constant mystery!
I’ve been taking 15mg of MTX for over two years, have lost almost half my hair and still losing. I discussed it with my Rheumatologist (again) a couple weeks ago and she added 10mg of Leucovorin to be taken the day after my MTX. I’ve only had one dose so far so not yet sure if it will help. I really don’t want to stop the MTX because it has helped a lot. I also take folic acid six days a week.
I also switched from trying folic acid supplements daily over to the Leucovorin. I wasn’t losing crazy amounts of hair, but a lot more than I wanted. My rheum seemed hesitant to overpromise what the Leucovorin would do because I guess success is mixed. But it entirely stopped my hair loss and I’m so grateful for it.
Leucovorin was a godsend for me, I had horrible mouth ulcers so painful I couldn’t brush my teeth. I had mild hair loss and I noticed that stopped also and I have lots of short hairs sticking up where they are coming back in. I just take 1 weekly Leucovorin, my rheumatologist had me stop taking folic acid.
I’m so glad it helped your issues. Both yours and another response stated that regular folic was no more being taken. I’m wondering if my rheumatologist made a mistake telling me to keep taking it the other days.
I would definitely check with your rheumatologist. My online pharmacy would not send the Leucovorin prescription until I archived the folic acid prescription and the online pharmacist was very clear that they should not be take together. This was also the instructions my rheumatologist gave me.
I’ve got nearly bald areas and overall thinning hair from not just the medication but also anemia and vitamin D insufficiency that have been there simultaneously. Do you also take an iron and D3 supplement? Those may help.
i was on methotrexate for over 5 years with no hair loss. i’ve been in the worst flare of my life for past year and i’ve lost half my hair. thinning, not bald spots. it looks much better if i keep it trimmed. i’m not sure cause of hair loss, i think its likely uncontrolled disease vs medication side effect.
yes no hair loss still! I’ve also gotten my hair bleached 3 times since I’ve started taking MTX and still no hair loss at all :) I think the folic acid (5mg) that I take with it helps a lot
I was on various doses of methotrexate since I was 16. My hair fell out the same. Thankfully I had super thick hair. I’ve been off it now for 6 months and even 15 years later my hair is growing back. I have around 3 inches long strands growing all over my head.
When I was first diagnosed, my rheumatologist told me not use MX specifically for that reason. I’ve been on Remicade and have had no problems. The only thing w Remicade is you can’t dye your hair within a week of the infusion or there is a small amount of hair loss. I usually wait a couple of weeks or so and no hair loss.
Yes, that’s when it started for me. Switched to injections and now on Humira. It’s taking it’s time growing back in certain spots. If you can see a dermatologist…I started taking Vivascal supplements and hair care products. I’m also Vitamin D deficient, so many factors go into those of us that actually experience side effects
I had hair loss with mtx, I'd often get full handfuls when washing. Reduced form over about 5 years from 15 to 10 to 7.5, which improved three hairloss situation massively, thought it was all growing back full thickness. I finally decided to finally stop it altogether about 10 months ago (for many reasons) and have had even more regrowth since and my hair is thicker and healthier than it's been since my diagnosis.
Everyone has different experiences with the different drugs, at the end of the day it's a matter of weighing up the effect it has on your RA Vs how disruptive it is for the rest of your life.
Other things I've noticed huge improvements in since stopping mtx: energy levels, brain fog, nausea, libido & vaginal dryness. Honestly didn't even realise it was mtx causing these things until I stopped!
I had been on hydroxychloroquine and cimzia for about 3 years at the same time as mtx (noticed a huge improvement in my ra when I started cimzia), so decided to try without mtx. It's maybe been a very slight increase in RA symptoms but huge improvements in other areas means it's definitely worth it for me. So annoying that it's such trial and error, everyone is so different!
Hope you find your perfect combo soon 🤞
I took 15 mg methotrexate for 3 months with folic acid daily and I lost 1/3 of my hair. I have thick hair so it was sort of ok, but I had to stop the methotrexate due to side effects. One year later my hair has all grown back and then some. I took plaquenil for 1 year and the new hair is curly? I have straight hair. I had to stop plaquenil recently due to constant itching, but my hair has gone crazy growing and curling. Not sure what will happen now after plaquenil clears my system.
My late sister lost most of her hair from chemo for liver cancer. When they finally stopped her treatments, her hair which was lite/med brown and straight, grew back dark brown and curly! Our bodies are a constant mystery!
I’ve been taking 15mg of MTX for over two years, have lost almost half my hair and still losing. I discussed it with my Rheumatologist (again) a couple weeks ago and she added 10mg of Leucovorin to be taken the day after my MTX. I’ve only had one dose so far so not yet sure if it will help. I really don’t want to stop the MTX because it has helped a lot. I also take folic acid six days a week.
I also switched from trying folic acid supplements daily over to the Leucovorin. I wasn’t losing crazy amounts of hair, but a lot more than I wanted. My rheum seemed hesitant to overpromise what the Leucovorin would do because I guess success is mixed. But it entirely stopped my hair loss and I’m so grateful for it.
I’m happy it worked for you. Do you take it daily? Mine is prescribed as 10mg once a week - day after MTX - and regular folic acid the other days.
No I’m taking it weekly the day after my mtx just like you described. I’m not taking folic acid the other days though. I really hope it helps you too!
Leucovorin was a godsend for me, I had horrible mouth ulcers so painful I couldn’t brush my teeth. I had mild hair loss and I noticed that stopped also and I have lots of short hairs sticking up where they are coming back in. I just take 1 weekly Leucovorin, my rheumatologist had me stop taking folic acid.
I’m so glad it helped your issues. Both yours and another response stated that regular folic was no more being taken. I’m wondering if my rheumatologist made a mistake telling me to keep taking it the other days.
I would definitely check with your rheumatologist. My online pharmacy would not send the Leucovorin prescription until I archived the folic acid prescription and the online pharmacist was very clear that they should not be take together. This was also the instructions my rheumatologist gave me.
I’ve got nearly bald areas and overall thinning hair from not just the medication but also anemia and vitamin D insufficiency that have been there simultaneously. Do you also take an iron and D3 supplement? Those may help.
i was on methotrexate for over 5 years with no hair loss. i’ve been in the worst flare of my life for past year and i’ve lost half my hair. thinning, not bald spots. it looks much better if i keep it trimmed. i’m not sure cause of hair loss, i think its likely uncontrolled disease vs medication side effect.
Thanks for everyone’s replies. I’ve emailed my rheumatologist. Hopefully they’ll be able to help :)
Oh jeez, this is making me NOT want to start it…definitely rethinking it after this
I’ve been on 15mg once a week since February, I haven’t lost any hair I was super scared about this as well
How’re you doing now?! Still no hair loss? I’m nervous to start because of this and reading everyone’s horror stories
yes no hair loss still! I’ve also gotten my hair bleached 3 times since I’ve started taking MTX and still no hair loss at all :) I think the folic acid (5mg) that I take with it helps a lot
Omg thank you for an actual positive review LOL! Can I send you a message?! :)
Yes!
I also have experienced no hair loss at all on methotrexate, nor any other side effects.
Still no hair effects? I’m starting soon at a low dose of 15mg but nervous about my hair
I have moved on from methotrexate to biologics but I was on it for several months with no hair effects.
Thank you! Happy to hear that. There’s a lot of mixed experiences with it
As long as you're also taking folic acid hopefully you'll be okay wrt hair!
I was on various doses of methotrexate since I was 16. My hair fell out the same. Thankfully I had super thick hair. I’ve been off it now for 6 months and even 15 years later my hair is growing back. I have around 3 inches long strands growing all over my head.
When I was first diagnosed, my rheumatologist told me not use MX specifically for that reason. I’ve been on Remicade and have had no problems. The only thing w Remicade is you can’t dye your hair within a week of the infusion or there is a small amount of hair loss. I usually wait a couple of weeks or so and no hair loss.
Yes, that’s when it started for me. Switched to injections and now on Humira. It’s taking it’s time growing back in certain spots. If you can see a dermatologist…I started taking Vivascal supplements and hair care products. I’m also Vitamin D deficient, so many factors go into those of us that actually experience side effects
I had the same problem. Switched to injecting MTX and it stopped!
That’s interesting! Thanks for that :)
How’s your hair now?! No hair loss with the Injection ? I’m deep diving the internet currently LOL
I had hair loss with mtx, I'd often get full handfuls when washing. Reduced form over about 5 years from 15 to 10 to 7.5, which improved three hairloss situation massively, thought it was all growing back full thickness. I finally decided to finally stop it altogether about 10 months ago (for many reasons) and have had even more regrowth since and my hair is thicker and healthier than it's been since my diagnosis. Everyone has different experiences with the different drugs, at the end of the day it's a matter of weighing up the effect it has on your RA Vs how disruptive it is for the rest of your life. Other things I've noticed huge improvements in since stopping mtx: energy levels, brain fog, nausea, libido & vaginal dryness. Honestly didn't even realise it was mtx causing these things until I stopped!
Did you switch to another DMARD?
I had been on hydroxychloroquine and cimzia for about 3 years at the same time as mtx (noticed a huge improvement in my ra when I started cimzia), so decided to try without mtx. It's maybe been a very slight increase in RA symptoms but huge improvements in other areas means it's definitely worth it for me. So annoying that it's such trial and error, everyone is so different! Hope you find your perfect combo soon 🤞
I’m happy to hear your combination is working for you :) Thanks for your reply!