dry and thinning hair: hello , i have been taking... - NRAS

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dry and thinning hair

lorrain profile image
40 Replies

hello , i have been taking methotrexate , 15mg weekly , hydroxychloroquine 2 tablets daily and 1 folic acid tablet weekly which have helped me greatly my problem is now iv got thin and very dry hair and was wondering as anybody got any advice to help me with this problem

thank you

Lorraine

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lorrain
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40 Replies
Hobbles profile image
Hobbles

Hi there,

My hair was exactly the same when I was on methotrexate :-(

My rheumy nurse increased my frolic acid dosage and it helped a little. My hair dresser tried different treatments, I even had my hair cut short but nothing really worked long term. For me the side effects lessened as time went on and my hair improved.

Unfortunately (for me) it wasn't until I came off metho that my hair returned to normal.

But remember that everybody is different.

I hope you find something that works for you, good luck

lorrain profile image
lorrain in reply to Hobbles

Thank you for replying to me iv told my nurse if it don't stop I will come off methotrex at the moment tho I'm trying all kinds of hair treatment see if anything works some seem to but only for first couple of washes then it dries up again

allanah profile image
allanah

I had the same problem but found it improved after a little while xxx

lorrain profile image
lorrain in reply to allanah

Thank you I hope mine does also

Ronnie63 profile image
Ronnie63

Hi Lorraine

I'm still on Methotrexate and Hydroxy, 18 months now. I felt my hair was thinning for about 6 months or so, I remember having to clear out the shower plug hole basket thing virtually every time I washed my hair, plus saw hairs accumulating on my pillow, which had never happened before. Of course I worried enormously as our hair is a massive thing and something I'd always liked about myself. Looking back, My worrying was making it worse and it was all mixed up with how I felt about the diagnosis, the future etc. when I relaxed more about the diagnosis and disease I didn't scrutinise my hair as much then one day realised it felt thicker again. Having not long changed hair dressers before diagnosis (mine of 10 years jacked it in after a sudden mid life crisis and told no one!) I couldn't really rely on what my new hair dresser thought, I did ask him eventually and he told me I have more than enough hair and he hadn't noticed any difference

So the moral of the story is it probably is a temporary thing and will settle when you yourself do, if that makes sense? Either that or I'm talking complete rubbish so ignore me :-) xx

P

lorrain profile image
lorrain in reply to Ronnie63

Thank you no you are not talking rubbish as I have had the same thoughts and I'm also trying not to think about my nurse has said it might settle down I hope they are right

wiliby profile image
wiliby

Hi Lorrain,

I should really be doing some work but and am far too easily distracted! (this explains a quick reply!)

When this happened to me I did some research into this and wrote a blog on previous site, I have since lost old account otherwise I'd re-post. So, what you need to avoid is anything that will boost hair growth as this will have a negative effect due to our immune system, taking suppressants, cell re-generation and lots of other zzzzzzzzzzzzzzzz considerations! :)

What would help is any treatment shampoo that helps re-build hair or adds body. Matrix do a fortifying Shampoo and conditioner which is exactly the sort of thing that helps as it prevent the hair from breaking of. (which is happening rather than fall out from root apparently) The hair is very fragile and you should avoid harsh colouring such as bleaching constant use of straighteners. Always brush hair when dry and never brush wet, always use a large tooth comb to avoid hair snapping. If you do straighten hair always use a heat protector (pail Mitchell 'The Heat' is the best I've used)

There are many salons offering organic colours now which are much better for your hair.

haha this was meant to be quick!

Some salons would recommend a range called Nioxin and may claim this is okay to use with MXT but it is not (because of cell regeneration)

Hope this helps and isn't too preachy!

(I work in Hair, beauty comp college dept)

and, sorry meant to say, it did settle down with me but my dose is very low. My hair is almost as it was :)

lorrain profile image
lorrain in reply to wiliby

Awe thank you that is so useful and in the morning I will be looking where to get some of the shampoos n conditioner my hair does appear to be breaking I do use. A wide tooth comb but do comb it while it's wet but I won't be doin that no more ha ha I av tried nioxin and it don't work for me either it dried it out more lol I will take ur advice and let u know how I get on in the future thank you very much

Angela123 profile image
Angela123 in reply to wiliby

Hi. Could I just ask as you know about hair products if Redken Intraforce is ok. I have the shampoo conditioner and a serum concentrate you apply before drying. Thanks.

emma36 profile image
emma36

Gosh, I start on methotrexate next week, no-one warned me about this side effect. My hair is probably the thing I like best about myself so a little worried now!! I have no advice as I know nothing about this, but really hope that your hair improves and is looking lovely again soon xxxx

helixhelix profile image
helixhelix in reply to emma36

Only happens to some, not everybody. So think positive. It happened to me for first few months, but ok now and I'm still on MTX.

lorrain profile image
lorrain in reply to emma36

Awe I'm so sorry I didn't mean to worry you I was worried about starting methotrexate to but I got to tell you it as helped with the pain lots I could hardly move let alone walk about due to the pain I was in but since iv been on medication I feel lots better and can walk n move and I'm also told it doesn't appen to everyone and it is hopefully for me temp and after awhile will settle down so please don't let my post worry you also ther as been some useful advice of other people that I'm gonna be trying so fingers crossed

emma36 profile image
emma36 in reply to lorrain

tbh, I would much rather be fore warned. My Dr is great but wouldn't talk about these kind of issues, he is very medical. Glad you brought it to my attention as I can now talk to my hairdresser and prepare just in case xxxx

sciqueen profile image
sciqueen

Hi

I remember Wiliby' s blog, because at the time I was going through the same thing. Only my hair loss started immediately after I took my first dose and every time I increases the doseage, until I got to 20mg oral. I would loose more hair. The loss slowed down when I started injectable mtx and this went on for a few months.

I cut my hair to a short bob, did protein treatments and bought quality shampoo & conditioner. The loss did stop, but my hair has regrown now to almost it's original length, but it is much finer now.I do not have any chemical treatment so no dyeing it now. Most peeps who come of mtx, say that the hair does regrow back. Since I'm still on mtx ( nearly 2 yrs now), that has not happened for me. I should say, that I have increases and decreased injectable doseage and I've not noticed any difference to my hair since the first few months of being on oral mtx.

Hence it will get better.

Good luck Joanne x

lorrain profile image
lorrain in reply to sciqueen

Thank you for replying I'm so glad I posted and asked for advice I feel more optimistic now so hopefully that's a gud sign

Ronnie63 profile image
Ronnie63

Should have finished by saying mine is definitely back to how it was before so try not to worry too much, it looks lovely in your pic xx

lorrain profile image
lorrain in reply to Ronnie63

Ha ha thank you I'm do glad there is some hope mine will be ok eventually lol

sylvi profile image
sylvi

Here is my effort to this Question. I dye my hair and i am on 20mgs of mtx and i haven't noticed any difference to my hair. The dye i use on my hair is illumin and the colour holds well. You can see by my photo that i have a good head of hair. There is hope out there and i hope you hair soon settles down.xxx

Ronnie63 profile image
Ronnie63 in reply to sylvi

You can't beat advice from an Oscar winning hair and make up artist now can you!! :-) xx

sylvi profile image
sylvi in reply to Ronnie63

Oh i love your sense of humour and so very true.xxxxx

Prairie profile image
Prairie

Hi Lorraine after reading these posts I must share what I did and really regret it now. I was on methotrexate at the time and my hair was thinning out and very dry...I mentioned all this to my hairdresser who very kindly gave me lots of help with different shampoo conditions lots of trims, still wasn't happy and then my hair was ok condition looking shiny but still thin but not bad..I was still taking methotrexate and fancied a change in style...anyway got so fed up I asked my hairdresser to give me a body perm...which she wasn't too happy about it explained it would dry my hair out but if I really wanted it she would do it. I now have this perm..which has given me lots of body what I wanted but very dry hair..split ends. I just wish I had listened to a lot of people and said no to a perm and its harder to manage with theses arthritic hands :( anyway good luck your hair looks fab...big hugs Nicola :-) x

Blackwitch profile image
Blackwitch

Try African Black Soap from Akamuti. I buy it online to use occasionally but my husband uses it every day. It feels strange at first but you can soon get used to it. I now use Faith in Nature shampoos and conditioners which are really gentle. There's a broad range to choose from and you avoid all the rubbish in ordinary shampoos. You could also try leaving coconut oil on it. The Coconut Oil Company does a brilliant oil in 500ml tubs which is also (in my opinion) the best tasting. A tablespoon a day will also help condition hair and skin. I use it as a body lotion - alternating with Shea Butter and Olive Butter. Akamuti and Aloma are brilliant websites. The prices may look high but when you compare them to some of the overpriced, chemical ridden concoctions available they work out lots cheaper. Another tip - try Walnut Butter as a day cream if you have a dry complexion. Brilliant.

rattusrattus profile image
rattusrattus

my hair thinned a far bit on mtx but ironically i didnt mind because its so thick that it has me around the bend! unfortuntly it was thinning more at the top than the back though and that was a bit annoying!

i've dyed my hair darker since i was 13 and never had problems but when i got diagnosed with arthritis i happened to want to bleach it and i was warned not to but i did it anyway - luckily it didnt snap or become too brittle because i love putting colour onto it - it cheers me up!

there is an amazing argan oil range of shampoo and conditioners available - its in a brown bottle with gold and green writing - i get mine from b&m or savers (on of the pound shops has it too) and its a bargin at 99p! it makes your hair as soft as chinchilla fur! lol.

i choose to risk damaging my hair with the colouring but i didn't use my beloved crimpers or tongs while on mtx - i tried using the tongs once (i wanted ringlets!) and got a huge shock - my hair felt like it was going to break so be very careful if you use ANY heat on your hair! i very rarley use hair dryers and if i do i never use the heat setting - so maybe hairdryers could be a problem too so be very careful with them.

i'm not on mtx anymore and my hair is back to being so thick that i have to buy extra hair colour - while on mtx one pack was enough but now i'm stuggling to dye it with two!

Angela123 profile image
Angela123 in reply to rattusrattus

Hi. Could I just ask how long it was after stopping the MTX that your hair loss stopped and how long before you noticed some growth?

rattusrattus profile image
rattusrattus in reply to Angela123

i think it was around 3 months. it takes a while for mtx to get into your system and it also takes a while for it to get out. it wasn't thinning hair which bothered me - i was being sick quite a lot and i worried more about taking the enamal off my teeth! :(

Angela123 profile image
Angela123 in reply to rattusrattus

Three months sounds like a long time. I might need a wig before then. I was lucky in that I never had sickness or anything else but this.

lorrain profile image
lorrain in reply to Angela123

hi angela my hair stopped falling out as soon as I stopped taking MTX I had to have it cut short but it is coming on ok now it is almost touching my shoulders although I do have some of it playing catch up as in some parts you could see my scalp its taken all this time but im feeling more like my old self now I only take hydroxy now and if im in pain I find that sulphadine max helps me so guess im lucky as I am not to bad at this time although I know this might not last it seems to be working for me now maybe I just needed the help at the time but I know I wont take mtx again that's for sure x I also go swimming and I find this as helped me a great lot I still remember back when I became ill I cud hardly get in or out of the bath and I was like that for about 3 - 4 months so I feel good that im able to go swimming and im enjoying it while I can because as they say about this dam RA ya just never know

Take Care

Lorraine x

Angela123 profile image
Angela123 in reply to lorrain

Hi Lorraine it's so nice to hear from you after all this time and to find out how you got on with the hair loss. I'm so glad your hair has recovered and you are doing well with the RA, Hydtoxy and Sulpha. I stopped taking MTX in August 2013 but after a horrible time with Sulphasalazine which my body wouldn't tolerate, I decided to be brave and give MTX another try in March 2014 after my hair had also recovered. This time my hair thinned quite a bit as before, but then within a couple of months it started re growing underneath with a vengeance, eventually going back to normal even though I was still taking MTX. My RA seems well controlled too. It just shows, what happens the first time doesn't necessarily happen again. Let's hope we both continue as we are for as long as possible. As you say, you never quite know what's in store in the future. Swimming is good - I keep promising myself to take some swimming lessons as I never learnt. Keep up the good work! Angela.

lorrain profile image
lorrain in reply to Angela123

we im really glad your doing well also lets enjoy these good times while we can it takes quite a lot away from us I know it did me I had absolutely no confidence at all but I do try to take better care of myself now and I hope to continue x

take care x

gradyjackjacob profile image
gradyjackjacob

I was taking 15mg of mtx a week and was told to take folic acid everyday except the i took the mtx my hair was still falling out and i developed rheumatoid nodules on both thumbs and nearly every finger.I saw my consultant last friday and was told not to take any of those tablets again.

Angela123 profile image
Angela123

Hi Lorraine. Just to tell you my experience - I was diagnosed in May this year and put on MTX 15mg weekly with folic acid 3 days later. After 8 weeks I noticed the same as you but my hair is naturally fine so it soon became very noticeable. My consultant assured me it would settle down. Two weeks later it started coming out all over my hands when washing and styling. Six weeks later I now have severe hair loss from hairline and sides. The back is thickest but has lost at least half it's volume. I'm a mess and very upset. My consultant said he's never seen anything like this before and it's very rare. I am off the MTX but still shedding hair all over the place. So depressing and it hardly grows either. What little growth I can see is white and baby fine. The doctor says it will be two months before recovery starts. I feel like I'm in a bad dream. Can't wait for it to end. I am trying Redken Intraforce shampoo conditioner and a special spray. Also a multivitamin and increase my intake of fruit and veg. Bought a tangle- tease brush to help with wet hair. I do hope your hair settles down Lorraine. If nothing else, it's good to know you're not alone.

lorrain profile image
lorrain in reply to Angela123

awe angela that must be awful for you i have brought some clip inn hair extentions and my hair dreseser has coloured them so they match my own hair better so i can leave my own hair to dry naturally and im not messing with it with heat and such i use a wide tooth comb and my hair dryer on low i have stopped useing my streightners trying to protect what iv got but iv only just started doing this so i have no idea if its going to work it took me ages to ask on here bout my problem and i am pleasently surprised ant the nice comments i have recieved and find them very reasuring and helpful as i do realise people are far worse than me as i have not had no other side effects and im no were near as in pain as i was so yes i guess i do have alot to be thankfull for i do wish my hair settles tho x and yours does to x

Angela123 profile image
Angela123 in reply to lorrain

Thanks Lorraine. Yes I should be thankful too as I have no pain at present and am in early stage of RA. You have some good suggestions here. Will try turning my hair dryer down for one. Good luck with your hair - let us know how you get on. I was like you - I thought it was just me with this problem but you had quite a few replies so far and they are all helpful.

lorrain profile image
lorrain in reply to Angela123

yes i will let you know how i get on im glad i found this site tho i dont right alot on it i do read alot of posts on here and have found them usefull

Ronnie63 profile image
Ronnie63

Hi again

Re reading your blog and some of the replies I thought I'd share the shampoo brand I now use (since I changed hairdresser) also would mention I have my hair dyed by my hairdresser my hair every 6 weeks and have done for years. I use Kevin Murphy shampoo and conditioner, it's an Australian brand, I'd never heard of it, Kyle Minogue uses it and used a specific called Angel Wash when she lost her hair following chemo, she still uses it and look how her hair recovered. You mainly buy it online, I do, although my hairdresser stocks it. To be honest I never thought of stopping dying when I started MTX, but I have never ever used bleach on my hair. You can buy sample sizes which is handy

All the best

Ronnie x

Angela123 profile image
Angela123 in reply to Ronnie63

Very helpful Ronnie. Will look up the shampoo. I also have my roots redone every 6 weeks and am worried about stopping that. Will check with my hairdresser if there's any bleach involved. Angela.

lorrain profile image
lorrain in reply to Ronnie63

thank you this past week iv been useing lisse design keratin tharapy not sure yet if it works tho yet x

Loulou75 profile image
Loulou75

Hi, I've been on mtx many years now and being totally honest I loathe it. I've lost my hair, got nodules on my elbows which look awful and lost time from work through being sick and fainting. Ive been told I have to stay on it in order to remain on my rituximab infusion. Ive had the tablets and injection and im desperate to come off it. All these hair treatments I have to be sceptical it's s massive cost if and if they do work. I wish u luck. The only thing I will say is that I've had this awful disease for 21 years now and my joints are pretty good now to be honest. ...so its either hair or walking. ...that's my choice x

Helenmetcalfe profile image
Helenmetcalfe

Hi my name is Helen and I am on 10mgs methotrexate and folic acid everyday after I take methotrexate once a week.I have Rheumatoid arthritis and Osteoarthritis and also Physoritic arthritis,I find the methotrexate is really helping with the pain a lot but the downfall is my hair is terrible,its really dry and is much thinner and I am really tired a lot of the time but I suppose I have to put up with that to be pain free,I am needing to get my hair coloured as I am a bit grey and I have a wedding in 2 weeks, is there anyone who can tell me if its ok to colour my hair while on these tablets as I am a bit worried about the outcome, I would really appreciate it.

lorrain profile image
lorrain

hi Helen I came off mtx when I wrote this post and im not doing to bad now but my hairdresser wouldn't colour my hair as my hair what was left of it was to weak xxx

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