I've being on methatexate 5 weeks with a week off as hair loss is bad and completely freaking me out !! Folic acid 5mg a day !! But today I've found a patch and all I've done is cry !!
Anyone any tips or advice ! My consultant and nurse are terrible never phone you back or get in touch when you email !! Not sure what's next to do !!! I feel like I'm getting down last thing I need X !!!! Xx thanks Katie
So sorry to hear about your hair, i had mine all cut off last week because of it. Devastating as i have always had long hair so i do understand :-(
Unfortunately i do not have any suggestions and nor did my consultant when i saw him on Friday.
Being a former hairdresser all i can suggest is make sure you use treatments and try and stay away from heat as much as possible to save it going through any further damage xx
I am a hairdresser too , and I'm losing all my confidence day by day !!
How much did or are u losing ?? My nurse advised me to stop taking methatexate for the time being !! I wish this night mare would go away !! I've started taking sea kelp too !! Not sure but worth a try !!
Hope your ok liking your new hair and it feels better ! Xx
I have heard Biotin supplements help.mught be worth a try.
Good luck
Aw thanks never heard of this I'll google !
Alot! Much more so since being on the injections! I don't have any bald patches (yet) just massively thinning. And fed up of people telling me it could be worse blah blah blah! Hair is important to self esteem!
I wish i could say i do but i HATE it and have pretty much had it up since!
What is sea kelp supposed to do??
Really I'm only on the tablets !
I know how u feel I'm 29 I wanna feel nice and want be me ! I like to look nice always have always will , being poorly all this year has taken all that away and now this but I feel the hospital don't really care and nurse was so rude when I was getting upset about it !!
It's soposse to help with skin and hair etc so I thought worth a try not sure it's doing much but I will try anything !!!!
Aw no ! It makes you feel down doesn't it !! Try to keep smiling x
Similar then, i'm 28, got diagnosed in October last year and from then till now i just feel bloody awful! My biggest problem atm is the fatigue. Do you get that? Sometimes its a struggle to do anything which is not really an option when i still have a year of my degree left and being a single mum to a 4 year old!
No i get that, people don't understand - professionals or not and it is harder because for us its so real.
I have found some great people on this site though that are very supportive and don't moan at you for moaning!
Oh really, let me know if it helps i'll try anything!
Am due to start hydroxychloroquine in a couple of days also and app a side effect of that can be hair loss too! ðŸ˜
Thanks for your replies xx
Pretty much same ! I had my own hairdresser had to give up got a 3 year old daughter some days I can't get up the stairs when I'm really bad !!
No one understand that I wanna go out still enjoying myself!!
I feel people don't understand and don't know the exsent of it ! I came on here to just to speak to others who are in similar situations!
No I'm ok on fatigue !
The nurse mentioned that to me the other day on the phone but don't think it's as strong of I've got the correct medication ! Is there anything that doesn't cause hair loss !!! I feel like stopping everything ! I'm on steroids too weaning myself of them !! X
Good luck and thanks for replying too
i think it is just so different for everyone as i've come across alot of people that don't suffer from hairloss! same with the medication, everyone is on such different doses and shame there isnt just a 'one size fits all!'
Well i understand - and yoi can always send me a message anytime if you just want to talk, or rant or moan or cry lol.
yeah it does get like that, and we are so young its not fair! and i worry about well what is it gonna be in another few years!
I sincerely hope the sea kelp works for you and that you start to feel better - but remember you are never alone here xx
Thanks Hunnie ! Nice talking to you !!
And same to you !!!
Stay strong !!!!
Xxx
I will take u up on messaging so can moan or cry lol !!! Xx
no problem, support is key! you stay strong too! We CAN fight this! xx
You poor things! I put a discussion on here a few weeks ago when I was feeling similarly, my hair falling out heaps due to methotrexate. I am a mum and teach 5 year olds and I so get it, losing your hair is a whole different thing to all the pain and disability. Such a part of your identity. RA has got my voice at the moment too! (CAn you believe it, there's a joint near your voice box and some RA sufferers lose their voices when inflammation not under control) :-( that's my identity too.
Anyway I do just want to say that when I told my Rheumatologist it was happening he increased my folic acid from 5mg a week to 5 mg a day. When I posted my discussion this was making no difference (after two weeks of increased folic), but now the hair loss is definitely decreasing. It is still more than usual, but less than half of what it was. Have you been on 5mg folic a day this whole 5 weeks? The other possibility I think could be my body getting used to mtx, but my other side effects (nausea, sleeping heavily for more than 12 hours after having it) are not less. I am also hitting the fish oil hard two caps at every meal now. Someone suggested biotin (vitamin b?) to me so I'm going to ask the doc about that when I see him next. Anyway, I did want to pass on that little bit of hope.
You know what else made me feel better was looking at chemo head scarves on the internet. Gosh! But there are some nice ones, honestly. The thing about chemo is that it has an end point, and we are supposed to stay on mtx, but my Rheumatologist hinted that he might take me off mtx if my hair got too bad. The other horrible thing for me and maybe you too as it's only been 5 weeks, is that the mtx isn't even working for the pain yet, so all this crap for nothing so far.
Everyone says it just takes time to work it all out and almost everybody seems to end up on a good combo that works for them, in the end. I feel so sorry for you two with younger children, that must be tough tough tough. I am 39 and mine are bigger and my teenage daughter said 'a wig would be cool, you could have any type of hair you want!' :-) :-( !!
Hi Katie.
im so sorry to hear about your hair. The methotrexate can affect your hair of course though I've heard different people say different things with some affected and others not so. It's rotten if your doctor and nurse are not responding too. Re hair, my advice is to take extra care of what hair you have. My mums hairdresser has been very good, helping her with different cuts and styles which isn't easy for an 84 year old who has had a lifelong perm and traditional weekly set and had thin hair anyway! She now has no perm, ever thinning hair and has bought herself a couple of trendy wigs which she sometimes wears. I hope things go well for you. Best wishes.
paula
Hua katielou so sad to hear your story I have had very bad hair loss after starting mex injections. It's so depressing to deal with that, weight gain and no energy. I feel like a different person outside and in. I have been on them for about 4 months and now the hair loss has stopped. I take biotin and my hair has improved. I also had to cut my hair it was so striggy and thin. It does improve if that helps you, so my advice is to hang In there and keep tying the different medications to deal with the fatigue. Of everything this horrible disease give us the fatigue is the worst! Take care I wish we could all meet up for coffee!
Hi Sonya,
Thank you for including me in that post too. I am so sorry to hear about your voice, what a sucky thing to happen! I hope that it is under control and back for you soon!
Thank you for the advice of fish oil and biotin, i will look into them. I had to decrease my folic acid back to once or twice a week as that also makes me sick!
Your message has helped and i hope we all manage to get the good combos soon!
Take care, and your daughter is right about wigs, i've always wanted an alter ego 😉
We so should lol
I live in NSW Australia, happy to meet up!
Haha I am near London, not quite around the corner!!
What a shame I think we could really help each other. In the mean time I get a kick from this forum each morning and it pumps me up for the day ahead! Take care you are not alone