Hiya
Anyone stuffer with hair lose. I’ve just being to hairdresser and she says my hairs gone thin.Ive always had thick hair.
I started on methotrexate in July 2017 and sulfasalazine in Oct.
I have noticed my hair coming out more and feeling lighter.
Anyone else got same or had same problem and if so what did you do.
Thanks
🙂
Hello
I've lost a bit. What is most noticeable though is how curly my hair has become! I used to have slightly wavy hair before methotrexate, now it's full on curly!
I’ve now got weightless hair.Ive still got my wavy long hair but it’s reall thinned.I want to no if it stops dropping out x
Yes it does eventually.
How long u being on it
About four months.
I’ve being on it 9 months last 2 months it’s got bad
I'm sure it will settle down, but talk to your doc if worried. I cut my hair short, and it's all grown back fine now.
Yeah I’m going message my nurse at start it was little bit of lose then it settled down and last six weeks it’s a hell of a lot more to concern me.just want to no if this as worse has it gets x
Maybe five...it's all a blur!
Been on Mxt 3 years and the hair loss has more or less stopped now but it is thinner and a different texture than before. It is quite curly when wet too Nettac. Weird. It’s ok tho, I’ve hit used to it.x
Thanks downtime mines also curling when wet but now it’s fluffy 🙂
I can relate, my hair is coming out in handfuls after just six weeks on MTX. It looks shocking and I'm only 41, I feel like an old bag!
Thankfully, I was told yesterday to discontinue MTX and I'll find out what other pharmaceutical delights they have in store for me in a couple of days time. I hope we can both find a solution xx
Yeah I only lost a little at start now it’s a lot I’m 52 my hair means a lot to me too x
I also started methotrexate last July. Went off in January because of the loss. Now on Arava but still losing hair. It was really thick. Now my scalp shows. I don't know what next. Losing my hair without losing the pain is very upsetting
Hi mmm yes mine was same really thick.I no some ppl might not get it but I think it’s a big deal but ppl notice hair before notice illness x
Yes, since starting on the dmards, humira, anakinra and now tocilizumab I have found my hair has gotten very fine and thin. I used to have very thick red hair, not anymore. Thanks disease and drugs.
How long have you been on dmards dwsurquhart does it stop I have red hail down to my bum x
It would be worth looking at the amount of folic acid you are prescribed. I take 5mg twice a week. For 3 years it was 5mg once a week but it was upped due to fatigue creeping back in and the higher dose has eased the little hair loss I was getting. Some people take 5mg six times a week. Hopefully upping folic acid will help, if not I’m not sure where to go from here without a change of DMARD which may not be viable or wise if it’s dipoing it’s job reasonably well.
All the best
Ali
Hi Ali
I’m on 6 days a week folic acid cus of sickness at start of mtx.
I understand it’s a catch 22 but I’ve psoriasis too but it’s keeping them at bay so it’s a 50/50 question do I want to be clear or have no hair x
This is over the last 3 years now. I am only on tocilizumab now. With a supplement of vitamin D to try and get hair to comeback
Do u suffer in pain now if your only on 1 med x
Yes. Lots of knee and feet pain. I am going to have radio ablation of some knee nerves in a couple weeks to deal with the pain issue. Tylenol 3 does not work, oxycodone does not work (gives major headache), emtech 30 does not work. I have tried some neurological meds to no help as well. All the tocilizumab does is keeps my inflammation under control. CRP was 159 now at less than 0.2.
Yes the MTX caused hair loss for me too. I’m still on it at a much lower dose and hair has recovered. The biologic I’m on doesn’t seem to affect my hair
So they can grow back.I do add hair oils to has I was aware it could knack your hair just wasn’t aware how much you would lose x
I’ve been on mtx more than ten years. I did lose a little hair in the early days. I had quite thick hair, but it’s now quite thin.
So it does stop Helen.if we have thick hair and it’s gone quite thin.I do feel for ppl who already got thin hair x
So do I I used to moan about my thick hair as a child - it was also very curly - and easily knotted! I now sympathise with my mum, who has always had thin hair.
Yes so did I always moan my was wavy now it’s fine but light.Guess just have to grin and bear it and realise I’m getting old 😂lol guess it’s down hill after this x🙂
Accepting that we’re growing older and adding all those changes our bodies go through is hard to accept - probably harder than the meds side effects!
Well I’m only 12 inside 🙂 lol
I totally understand that.
Gotta to be young sonme where
I've had hair loss twice. After my first THR became infected, I was in hospital on IV antibiotics for months, then oral antibiotics at home and my hair thinned but soon recovered. I was told this can happen after a traumatic event, not necessarily whilst the event is happening, but afterwards.
The second time was a year or so ago. GP thought my ferritin level was too low and I took Fe tablets. This improved the ferritin level but not hair loss. Another GP said there was nothing medically wrong, it might be my age (early 50's) and there was nothing she could suggest. I started taking chewy multi vits and now my hair is back to normal.
I've taken MTX orally and injectable for over 30 years so doctors didn't think it was anything to do with that.
So it could also be my age has well lol oh joys of aging.
Was or are your multi vitamin for hair or just them for all vitamins.I think I might give them a try.I have message my nurse cus I’ve found two lumps on my finger so I will ask her.
Thanks for tip x🙂
I only buy the 3 for 2 from the well known Chemist!
Hi. Ive been on mtx about 14 months 20mg orally. My hair is now thin and has gone fluffy and frizzy. I was told the loss should stop and that I wont loose all my hair. Im only on 5mg of folic acid so Im going to have a word with rheumy as also on sulph and hydrochx and not in remission. Anyway I was told I would not go bald. Im 60.
So it’s sounding like everyone’s hair goes thin.Ive not had anyone say lost it all yet.
But guess doctors will find a cure to stop ppl losing hair one day.
Just have to wait for that day.
🙂
I think you are correct with both your thoughts.
Yes might not be in our life time though.I no things improve in time.
Some for the better some not.
Hi there , glad to hear that I’m not alone . I’m on MTX and on adacept (orencia ) now but before I was also on sulfasalazine and my hair is so thin it’s forever falling out but during the hair lose season I loose more , somehow I’ve still got hair , this has been happening for years since being on meds . My hair is not thick to begin with but I have tried some hair vitamins here in oz and I found these helped until they wear off after a couple of months and it’s back to losing hair . But they do help a little . I found that if I use a very wide comb it’s better than brushes . I try to avoid combing my hair and I also found tying my hair up also made me loose more hair so I try not to do much to it to avoid losing more . Sorry maybe I wasn’t too helpful . But I wouldn’t worry too much about it sometimes the more you stress over it the worse it is . Unless you see bold patches I wouldn’t worry about it .
I don’t know where you are but try to get some hair food that’s what they’re called Good luck and keep smiling it’s only hair
Hi, I have hair loss also, my Rhumy nurse said my hair would probably go thin but not bald, well mine has gone thin, I used to have really thick hair. I am on weekly Methotrexate injections.
So we are all in the same boat 🚣♀️
Guess we will all be in cool in summer
🙂
Hi tattoo
I have a really good brush.
I did google it and it’s says don’t tie hair up unless u have a clip.
But I do that anyway.
Always use a hair oil to protect it.
Never use irons on hair has it damage it.
I also have a really good hairdresser.
I’m also going to try vitamins.
I’m trying not to stress about it.
But glad no one has lost all hair.
That’s a light at end of tunnel.
Thank u
From wet uk
🙂
Same happened to me. It settled down after about 8 months on Methotrexate but now I have the annoying regrowth fuzz. Try "Roots" shampoo from Superdrug. A friend bought it for me and I do think it makes a difference.
Thanks for tip.
Wish Hosptal give u list of what to expect and not to worry about it happen as it’s normal 🙂
Agreed. Maybe they don't want to put the fear of god into us anymore than it already is when we realise our bodies are breaking down on us! Good luck with the shampoo.x
Yes I no lol it could be age reality too x
If you read the list of possible side effects for any one of these drugs, it becomes apparent that almost any system anywhere in the body can be affected. If the rheumatologist were to hand out such a list in normal sized print, we'd all be put off
That’s the funny thing I did read list of side affects I don’t think about it too much with the other side affects im getting just thought it’s on the list but has it’s my hair it’s not has easy but heyho can’t have it all ways just have to live it 🙂life’s too short too worry x
Yes I had it with leflonomide, came off it cos of other reasons and things have improved. On mtx too so guess hair will never be the same. Ladyjan
Yes looks that way 🙂 x
Are you taking folic acid?
Yes I take folic acid six days a week x
Try taking folate instead, my natural doctor recommended that since folic acid is synthetic. Look up 5-MTHF from Thorne. I stopped MTX due to hair loss back in October. Here I am, still losing a TON of hair and surprised I'm not bald yet... But I'm incredibly distraught about it. Most of my posts are about it. Good luck to you... It's not fair... And no it's not age. I'm 34, always had full hair too now. It's the meds or the disease for sure
From all that’s replying it seems hair thinning is a common side affect from all the medication to do with arthritis x
Hi - I'm on folic acid to counteract the hair loss that I had when I was put on methotrexate. It does work but my hair is not as thick as it used to be - of course my age could account for some of that! Ask your doctor for some and explain why.
Good luck.
Hi I’m on folic acid six times a week.I have message my nurse but she is yet to get back to me x
I lost about half my hair on mtx (and my hair was thin to begin with). It looked so bad that I started wearing a wig. I went off mtx this last Oct. and put on sulfasalazine. My hair is coming back in now. My rheumatologist said that a lot of mtx side effects are dose related and wanted to reduce mine, but I wanted off that stuff and wanted my hair back and to have a glass of wine - sulfasalazine it was.
I’m on methotrexate and sulfasalazine at same time.dont think many women want to lose hair but saying that some men won’t x
I took folic acid, biotin and everything else imaginable but nothing helped. We have to remember that methotrexate is a very old chemotherapy drug and even in our small doses will attack rapid growing cells like hair cells.
Hiya just thought I'd say I was on both off them.. it was the sulfasalazine that made my hair fall out in loads.. rhuemy took me off that and my hair came back nice and thick again.. mtx...i inject each week... no problems now..guess everyone has different side effects
That’s odd really. I’ve been on Sulphalazine for 10-12 yrs now with no hair loss. Then I started MTX and my hair starting thinning immediately.
lol I google it at the time and that’s what it said
You got me thinking now Marie since I never had problem with methotrexate so it could be sulfasalazine if only my hair could talk 🙂 lol
I’ve just realized that your post is 4 years old!! So how are you now? How’s your hair situation?
Yes it did calm down but it is scary at the start when you don’t know how much you going to lose. My nurse did tell me that they don’t tell us so not to worry us as worrying cause hair loss lol it’s settled after about 2/3 months. Don’t time fly
Bless you for your reply after all these years. I’m so glad it settled down for you and I hope you’ve been keeping well (as can be expected)I’m at the start of my RA journey really.
I was diagnosed with AS over 40 yrs ago but I lived abroad in the sunshine and, apart from some bad times and hospital stays, I’ve coped.
Now it’s become RA and Osteoporosis and I’m back in the UK under the NHS so life is more difficult.
The Rheumy is saying it’s time for biologics but I’m so nervous of more side effects. And hair loss!!
Yes you too also for replying after all this time. Since then I’ve also got osteoarthritis as a add on and of course fibromyalgia. I’m also waiting to start on biologics that’s what dr said on last appointment just waiting for next one app. Keep well and hair full not hair less lol
You’re a star. Keep well yourself. I would love it if you could let me know how you’re getting on and we can compare stories?!
Yes sure I’ve never left the site I just don’t always talk as much lol
👍🤗
Good luck. Hope you get it sorted. X
Thanks Hun will do if my nurse ever gets back to me being waiting since Monday 🙂
I was taken off MTX because of hair loss.
Well still waiting for my nurse 3 days later to advise me on it x
When I started leflunomide in 2008, after a few months I noticed my hair breaking and starting to thin. I talked to my (former) Rheumy, asking if it's the med, and she brushed it off with a chuckle saying, no it couldn't be, it doesn't have that side effect. Well, I found out of course that it was, but unfortunately male pattern baldness is in my family, and the way I lost my hair is similar to a man going bald. Then she said there's nothing to be done because it's the RA doing it. As a woman I became very depressed, now have been wearing wigs for years. My hair used to be so thick, now it's wispy and the top and sides are gone.😢 I still haven't given up though, am trying some natural things right now(many hair products I can't use because I'm allergic to soy and gluten intolerant, along with a sulfa allergy). Oh well....
Hi
Yes it’s ok for nurse to laugh if it not happening to them.
I have also being google and it seems coffee is good for it.
No not tried yet 🙂 but I understand we need to get rid of pain but to a woman or a man to lose naturally is bad but to lose cus of a few pills I think is worse.
I no when we get to a certain age it gets thin.
I say I’ve lost half of what I had in few months.
If it keeps going the way it is I will also be buying wigs come summer 😳
Hi hun
I’ve been taking mtx and hydroxichloroquin (sorry if spelling wrong), for over a year now but I also take folic acid everyday except mtx day. I did have thining of my hair but I think it has started to get back to feeling a bit fuller, think it must be the folic acid helping?
I hope you find a happy medium soon.
Sue
X
Hi Sue
Thanks for your reply.
I’m sure I will do in time. It also seems no matter what pills/injections your on.we all go through it.
I think it’s quite scary when you see your hair dropping out
I normally take everything in my stride. Don’t normally panic.
If I get side affects on any of my happy pills.
It’s good to be able to get others feedback too.
🙂
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