I have been on Yuflyma for 6 weeks and have noticed an increasing amount of hair loss. I am also on Folic acid seven days a week as I was previously on Methotrexate , but stopped the methotrexate a few weeks ago. I had been on Methotrxate since May of last year, both tablets and then metoject pens. I am also on HRT evoril sequi . And prednisone 2.5mg a day currently as I have been tapering off. I noticed some hair loss with the methotrexate , but now its just got worse and really upsetting me.
I know myself what my hair was and how it feels now and it is so much lighter. Strands are just coming out all the time and a lot when I wash it. No one seems to be listening to me, the Rheum team at the Hospital said continue on Yuflyma as it needs more time to work, my GP said ‘ you have loads of hair’ and my Husband does not even think there is anything wrong. I have shown both the GP and my husband the ball that comes out in the shower. I have managed to get the GP to email the Hospital to ask to speak with the consultant ( a week and half after I saw the GP) and I have had blood tests done. My Iron is low and vitamin D. Thyroid appears ok.
I just dont know what is causing this and I am getting more distressed day by day, because no one seems to be listening to me or providing any solution to stop the hair loss. Can anyone help or suggest anything please , because I have lost so much the last year and I cant bear losing my hair.
Any help appreciated
Thank you
Written by
MDWinter23
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I’m sorry to hear this. Humira original biologic did nothing at all for me in 4 months so didn’t affect the hair. I found my hair a bit finer once on full dose Mtx tablets but it returned to normal after a while. Have you taken a hairball photo and shown the rheumy nurse? Just so you can say it is a fair amount of loss
All sorts of hair products online but my hairdresser always recommends to use what he does in the salon .. Kerastase. It’s quite a bit pricier than Elvive or Aussie types of nice but cheaper volume shampoos (I do like those two too) but worth it and lasts me ages as I’ve had a hair chop to collar length recently. I use Kerastase’s Densifique and Volumifique range as my hair is finer since I turned 50 and my thyroid became overactive. They are fab.
Or if you prefer to try make it look fuller with styling products when blow drying, then I recommend L’Oreal’s TechniArt heat activated styling (pump) spray and then a finishing spray like a fine hair mist. Neither are sticky and smell lovely. They make me look like I’ve loads of halr.
I do hope your hair settles and I hope once you’ve improved your vitamin D deficiency and iron levels are higher that it reflects on your hair. 🙏🩷 Brittleness can occur from lack of iron and make hair shed. Good luck with the med.
I don't have a similar experience to speak off but could it be related to the stopping mtx? Your hair could have been affected by it and now you have stopped it It readjusting. Similar to after childbirth loads of hair falls out because it didn't when you were pregnant if this is the case it should settle down again but could take three months at least. I do hope it will settle down soon for you.
I was started on Methotrexate 6 years ago, my hair was falling out in chunks too. I was advised by Rheumatoid nurse to invest in Biotin vitamin which stopped my hair falling out as much. I also take collagen and my hair is back to normal and best condition ever. Hope this helps.
Hi there, sorry to hear you're having to deal with hair loss on top of everything else. The medications we take for RA affect us in such complex ways it can be hard to know what's causing what, but low iron and vitamin D can definitely be associated with excessive shedding of hair so it might be worth discussing that with a GP before doing anything else as it might help and supplements would be easy to get started with (if that's right for you - I'm no expert but do know that excess iron isn't good either so needs to be monitored carefully). I really hope you find a solution for this - I lost more than half of my hair when I developed RA and then started methotrexate and it was so disheartening on top of being so unwell.
I really sorry for this problem. It hasnt affected me (yet) so I am unable to give any really helpful suggestions BUT you should keep on at your Doctor and rheumy nurse or rheumatologist for help. It is bad enough we have our friend "Arthur" and the side effects and soft tissue injuries/problems can make life much harder to cope with at times. Be persistent and I hope that the advice others can give make a big difference to you. Gentle hugs
This happened to me with MTX and it was stopped. I also felt like I’d been set on fire in my stomach. Once stopped it regrew normally. I don’t know about the other medications but it will take while for the MTX to leave your body.
Thank you all so much for your replies, I appreciate the time and thought everyone has given in replying to me which has given me some ideas. It is very demoralising and stressfull going through everything that comes with Arthritis. Hair is important because it is so closely linked to a persons identity and who we are and see ourselves as. Arthritis takes so much away, in the person we were and then the medications we get given. I wish it wasn’t the case.
I have ordered some of the shampoo and conditioner as recommended and I will start taking some Biotin. I will also keep on at the Hospital and GP . I have started on the Vitamin D and trying to eat some more red meat in my diet for the iron.
I will still hope that there is a solution to this and that things improve. I didn’t know Methotrexate takes time to leave the body , maybe its that or it could be a combination of things already mentioned. My poor body ( and mind) feels like it has been in WW3 with everything that has been thrown at it. Trying to communicate this to people and get the right help has not been easy, and the fustration and sadness has been overwhelming.
I wish you all a good Bank holiday weekend. Sending hugs to all of you.
Hello MD Winter 23. So sorry to hear this and to say this has just started happening to me too after 8 weeks on yuflama and agree its very upsetting and you are not alone with this. I was on mtx and lef and predisolone before and my hair was coming out then but not like this. I moved straight to yuflama from Lef and continued on 5mg of presidolone which have been on for 3 months solid at 5mg and booster courses before on and off. Started to have bad steriod side effects and advised to taper off at 2.5mg for one week then stop the steroids and if need again to have in injection form instead as not as hard on the body. A week later my hair is now significantly coming out in the shower and hair brush. My rhumy was quite curt when reported the noticeable hair loss a few weeks ago and said the nhs does not prescribe folic acid for yuflama and to speak to my doctor if wanted it. Also said it could be anything causing this,that I had to accept side effects to get well and not to stop yuflama but my choice ultimately. Feel the yuflama is just starting to work so will persevere to the 3 month review but I'm with everyone that hair is important and to also have that taken away as well as everything else is so depressing and that we are not just chemical experiments but real people with valid concerns and fears about all the drugs we have to take and that a bit of empathy, especially from female rhumies, and issue of a known vitamin that can help, is not a lot to ask for!. Sorry but feel quite cross about my last interaction with the hospital. I have since started biotin one a day 100mg. Doctor recommended to also take a multi vitamin. Going to speak to boots as on thyroxine about best one. Hairdresser yesterday said hair was definitely much thinner than last visit 7 weeks ago, but nl alapecia patches, as I normally have very thick hair and the boots assistant said you get lots of hair loss after stopping presidolne for upto 6 months after, then it stops and starts to come back. I was heartened to read online that it's upto 1/3 loss and not all your hair!. Lots of great advice from everyone re shampoos and checking iron levels and b12 levels and going back to docs on Monday to ask for a blood test and show hair loss over 2 days. Also dentist said lef takes 3 months to get out your system and only half way there as still have a sore mouth. Overall I am hoping this is a reaction to Lef and steroid withdrawal which needs to work out the system, supported by vitamins,a good diet with vit C and greens and thickening shampoos and ruling out iron deficiencies and hoping yuflama doesn't continue the hair loss. The good news is that it's hat wearing season for another 4 months so the problem can be covered up until all the above hopefully kicks in. Just hoping have some left for Xmas day I hope this helps . Xxx
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I hope this helps . Xxx
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