My HAIR!!!

[Blythegirl]

I've been on methotrexate for 8.5 months...my super thick and coarse hair has switched textures and been falling out. Worst of all, on the top of my head.

What can I do?! RA has taken something else from me. 😢

[Hidden]

Hi Blythegirl, mtx did exactly the same to me. I was devastated by it and found there are a lot of helpful threads on the subject. I tried Nioxin shampoo but unfortunately it wasn't for me and my fine hair but may suit you. I also started Biotin supplements which I think helped a little. Also check with your GP just in case you have a thyroid deficiency or something else causing it. I have a drawer full of thickening shampoos, mousses, sprays etc. Eventually I decided to come off mtx and just stopped it resulting in a massive flare. I've been back on the Metoject at 10mg per week for 2 weeks now and am waiting to see if the hairloss returns. Hope you can get some help. I've been on and off mtx 3 times now and each time my hair has grown back after stopping the drug. Maybe your rheumy could lower your dose or try injections x

[Blythegirl in reply to Hidden]

Thank you, this is devastating. I'm going to call my rheumatologist tomorrow.

[AARA]

Hi Blythegirl,

Do you ever find yourself questioning which is worse the disease, or the side effects of the Meds? If you have experienced significant joint destruction and lots of pain, it can be easier to remember just what an awful disease RA is. When the meds. are helping to control the disease, it is easy for your focus to shift to the side effect.

My hair was my crowning glory throughout my life. I had the kind of hair that my hairdressers raved about. In recent years when I have been on biological infusions, I have gradually lost most of my hair.

If you had not known me before, you would say I still have a head of hair. I know they are trying to be helpful, but when you know what Mother nature blessed you with and your just left with this thin frizzy mess.

I have until now kept my hair long. It looks dreadful. I have made a hair appointment and I think it is time to let the hairdresser do her thing. If she changes the style I am concerned that I will not be able to manage to style it. My wrists are fused and they offered me two new wrists and two new shoulders in 2010, but I turned the operations down. In the previous 3 years I had just had both hips and both knees replaced and I could not face more operations at hat time. Severely restricted and painful arm movements makes all aspects of hair care a real challenge.

There are just so many ways in which this disease gets to you.

AARA

[GeorginaS in reply to AARA]

Great big hug ❤️ As you've said, the side effects of drugs are devastating.

The disease, the drugs and their side effects plus the psychological impact, makes everything so difficult xx

[Blythegirl in reply to AARA]

This is familiar to me...my hair WAS always the talk at hairdressers. (Lots of places) People minimize my current situation because I still appear to have tons of hair- it's just not evenly distributed.

I too am concerned with the styling part of a new "do." More challenges...

[Blythegirl in reply to AARA]

Too many. It seems you understand. 😢

[Creakywrists]

Same thing happened to me - my thick strong hair changed texture and thinned. I could see my scalp shining through, especially on the top of my head. Tried a couple of thickening shampoos but they didn't make much difference. Decided not to stop methotrexate (20mg) as I really couldnt bear going back to the way I was before it started working - ankles, knees, wrists, hands, elbows, shoulders etc etc - you get the picture - pretty horrible !

Anyway I got it cut short and the thinning eventually slowed down. I switched to metoject pens a year ago and my hair is fairly thick again though it's very curly on one side only which is a pain - sometimes I straighten it and sometimes I curl the other side to match - you can't win !

[Jay2 in reply to Creakywrists]

So do you think the change to injected methotrexate has made a difference? I'm hoping to switch to injections instead of tablets so I hope this will help

[Blythegirl]

Thanks for the suggestion about the pen...

[medway-lady]

Just talk to the consultant, this happened to me and I was switched to Lefludamide. Hair returned to normal as did everything else. Now in remission. You are not alone but it does return and don't waste money on miracle cures it is just par for the course in trying ant medication. Lots do it not just MTX.

[Gnarli]

My abundant fine hair has thinned and lost most of its curls so had it chopped into a short layered bob. I'm allergic to all the mousses, sprays, stylers, hairspray, colourants and many hair care products so, on lazy days I leave it to its natural waves (or the hairdresser) and on good days straighten it and rock the rather chic silver fox look that is the new old me. I also promised myself that if it got worse I'd blooming well have a wig for every day of the week. Purple for Sundays. So there

J

[Blythegirl in reply to Gnarli]

It really stinks but I love your attitude! I confess, I thought wig today...

[Downtime]

Hair loss is devastating as it's so important to our self esteem. Do you take folic acid once a week? Maybe it can be changed to every day other than Mxt day. It's worth asking your doctor. If it's severe a change of meds maybe. Mine settled down after a year or so, now it's sort of ok, but not like it was originally.

[linda-5502]

My hair has thinned too but the most change was having had dead straight hair ALL my life it is noe very frizzy and curly luckily my hairdresser has got some shape to it but i still do not know why this has happened maybe someonr can offer an explanation. Sending hig hugs for you xx

[Jennylaty]

Methotrexate did the same to me they increased the folic acid to one everyday except the day of methotrexate which definitely helped.

[Blythegirl]

I currently take 1mg folic acid daily. I have the entire time I've been on MTX. 😢

[Deminem in reply to Blythegirl]

Hia Blythe,

I totally get how devastating this is.I have been there and even now recoving from hair loss through taking Benepali(stopped taking it 3 weeks ago)

As an in between measure I use Caboki, have you heard of it? Please look it up online and then look at youtube for ppls experience with it. It has been a game change for me.

I think I will write a dedicated post with photos so I can reach more of us who have this disturbing side effect.

Lemme know what you think of what you see in your research.

D