Really bad hair loss PLEASE HELP

Lauraalice

I am 15 and last month was diagnosed with JIA

I take 30mg of steriods every day and 9 methatroxate tablets every week, but I have a really bad side effect of hair loss. I am blessed with really thick hair, but since september 1st when I started my treatment I have lost about 2/3 of my hair and though there are no bald patches yet at the rate I am shedding there will be by christmas. Please help me, is there anything I can do? I am so unbelievably depressed by it, The hair sheds all over my clothes and I can pull out clumps. I already take folic acid - is there anthing else???

I was seriously ill over the summer. As well as JIA I was diagnosed with HLH (a disease in which my body started to destroy itself starting with the bloods.) So I had no iron intake for a while and that could also be a cause, plus it was very stressful and I know it takes two months after a big streefull event before hair loss starts and that would mean the beginning of october, but its now Mid October, i hate life because of these tablets PLEASE HELP.

barbara12

Oh my love I do wish I could offer some help, but I am glad you have found us lot to talk to, and I do hope someone comes forward very soon with some advice....saying that its is usually quite here on a Sunday.
I really do wish you well with everything ((((()))) xx

stickywicket

You have had a terrible few months, Lauraalice, and I can't even begin to imagine how Devastated and stressed you must feel having suddenly acquired two serious diseases almost simultaneously. You must be very strong mentally to be coping as well as you appear to be doing.

I take meth too but I've never had the hair problems though I know it can be a side-effect. If it is the meth that is causing yours, you could ask if you can increase your folic acid uptake. The level prescribed seems to vary enormously - I take two weekly and always have done but some take it every day except meth day.

You say, however, that it could be caused by your lack of iron. I also wonder if it is perhaps caused by, or worsened by, the stress you must be under.

Whatever the cause, Lauraalice, I think you need to talk to your medical professionals to find an answer. Perhaps you could start by ringing your rheumatology helpline tomorrow. Your GP might also be able to offer some advice and/or whoever you see for the HLH.

I'm so sorry I can't suggest anything more sure and certain than that. Like Barbara, I really feel for you and I do hope the docs can come up with something quickly.

salamander

Hi Lauraalice, It's horrible to lose hair as I know. I'm on steroids (no methotrexate) and have lost hair. Mine is fine to start off with and I have tried all kinds of hair products but think it will only stop when I come off the steroids. I tend to wear it tied back most of the time.

You could do something trendy with hats/headgear etc. especially now winter is coming along. The other thing you could do, but you may not like my suggestion but it is only a suggestion is to go really, really short and funky for a while. A good look on someone of your age!

Maybe you could also talk to your doctors as there maybe something they can do to help minimise the side effects of your drugs.

Let us know how you get on and best of luck. I hope someone has some other suggestions for you.
xx

dreamdaisy

Ye gods, what a stinker. Arthritis is a harsh disease and as such requires harsh meds and the whole thing is so bl**dy unfair; as for the other I have no idea what to say to help or comfort. I think your starting point is your rheumatologist - I wonder if there is any way that the high dose of steroids could be reduced? Steroids are a lovely but deceptive drug - as for the meth what is the total intake of your nine tablets? There has to be way to solve this and I hope you can find it. Hang on in there girl, none of us know what the future holds and it may well be better than you think. Take care, keep in touch and I wish you well. DD

villier

Awe sweetheart as if you haven't got enough to contend with, try and get an app with your rheumatologist asap, there must be some other meds or combinations that they can try to stop the hair loss surely, I have hereditary hair loss so know how you feel, hope you can get some answers soon..........tc......Marie xx ((((())))

bubbadog

Hi Lauraalice, Firstly welcome to Arthritis Care forum, Now this is something I can help with! I have always had a thick head of hair and I always have the samething said to me by hairdressers 'you have the most beautiful thick hair'. I get it from my Indian side of the family. But since my health has gone down hill I have started to loose so much hair! As you it comes out in chunks when I'm having a shower and I mean when I'm shampooing my hair chunks come away! And the shower plug hole gets blocked up by it! And we have cream coloured carpet throughout the house and it needs to be hoovered every other day because it goes black with my hair falling out all the time! I have to warn hairdressers when I start with a new one about how much hair they will find coming out when washing it and it's nothing they have done! I've even been asked on several occasions if I'm having chemo! I've asked my G.P about it and if anything is causing it and she told me it's a side effect of the mixture of meds I'm taking and she has promised me I will not have bald patches or loose all my hair which I'm glad about as my hair is my fav part of me! So don't worry lauraalice your not the only one suffering with it, but I do know how it feels! having to clean it up after brushing your hair it drives me nutty!

mmarshall

Hello Lauraalice

The same thing happened to me years ago before I was diagnosed with RA.
I had been feeling really tierd and eveything was a struggle as I had no energy and my hair was starting to fall out. I went to the docs and they done blood tests and it came back that I had a problem with my blood and had to go on a high quantity of Iron tablets. My hair was still falling out when I washed it or ran my fingers through it. What happened in my case was due to the shortage of Iron in my blood, my hair had stopped growing and basiclly died for a while and then the new hair started to come though and pushed out the rest of the old hair. I also had no bald patches and looked as though I had gone through Cemo.
I eventually had to get my hair all cut off not shaved but really really short and my hair did grow back in curley and grey. I was evetually sent to see a dermatologist who examined my head and said that I was lucky that there were no bald patches and it was a this was a good sign. I had dark hair before it fell out and the new hair eventually started to come though dark again but I could not get over how curley it was.
When I first went on MTX after being diagnosed with RA I noticed my hair getting thin but thankfully it is now okay.
I hope telling this helps you, I know how bad it feels when you loss any hair and at that time I cried but things will get better.
Thinking of you
Mary

fowls48

Laura alice


I do wish you well looks like you have had some good advice and Bubba having the same problem must help .Sorry i am not of any use .But i do wish you well .And welcome to the forum .


Fowls xx

knuckleduster

Hello Lauraalice

Regret to say I can't offer any advice, apart from talk to your doctor and perhaps ask to see a specialist about your hair loss, but I just wanted to say how sorry I am to read how you are suffering and hope things turn around for you very, very soon.

Keep in touch with us and many best wishes.

Janet xx

lozzC

Hi Lauraalice.

Firstly I am sorry you are going through such a bad time at the moment, but you have defiantly come to the right place. There are some fantastic people on here who have some great advice and really know their stuff!!
They have helped me through some difficult times.

I am also (pretty recently) on the same dose of Meth as you (by the sound's of it) and I am also having problems with a lot of hair loss (from having really thick hair).
Like other people, I have to warn hairdressers about the amount of hair that comes out and we find it all over the house... and all over work!!!

Like other people I have been told that I 'shouldn't' loose all of my hair, it might just keep getting thin. A friend has also recommended to me that I start taking 'sea kelp'. I have only just started take this supplement, so I can't really tell you if it is helping or not.... but my friend really believes in natural remedies so I thought it is worth trying.
I would be happy to let you know if it works..... although I am a little bit cynical!

I totally related to feeling low about the hair... but the one thing I have learnt since my diagnosis with RA, relativity young at 23 (which might sound old to you ), is that arthritis is such a rubbish disease and I have decided that I need to laugh.... else I would spend my life crying!

chin up love remember how amazing you are, your JIA doesn't define you! xx

Milly8

I am sorry you are so young and having to deal with such a crappy condition and I am so sorry about your hair .i am afraid I can't offer any help but would like to now that I am thinking of you and this site is a great help and support .
Bye for now
Milly

Loulou11

Defo see if you can up your folic acid it stopped my hair loss quite a bit, and keep your chin up, this condition can be a b****** but you can get through this and things will settle down xx


Take care xxxxx

Lauraalice

Thankyou everyone for the comments they did help

On an update about me, I am now on a new drug, The name is something like tropzcill (Given by drip, really expensive) as methotrexate does not work effectively for me - though I still have to take it

The hair loss stopped, it was because I was really ill during the summer it was a knock on effect I also take biotin which helped lots

I have another question, Today is xmas and I have had 5 glasses of champagne, Mum has shouted at me and I have drank a lot of water afterwards my last glass was at 6pm and its now 1am and nothing has happened - will I be ok? It is my first drink since on Methatrexate, was I wrong to do so ad should I tell my doctor for immediately or wait until my next visit (which is in two days)

Thanks, Laura x

Loulou11

Dont panic your be fine you can't live like a nun forever, as long as it was a very rare occasion and you diluted the alcohol with pints of water don't stress about it and enjoy xxxx

valval

i have lost my hair but it because am on chemo and to be honest love it so easy to look after do not wear wig often scarfs hats do job well yesterday it was santa hat today got to take wig for dad to see lol he not seen it yet. it will grow back when you are doing better. drink well i on chemo and morf and had glass of bubbles yesterday you will be ok and will have helped you destress so do not panic if you not drinking all the time a one off will be ok for you have lovely day val

Corrig

Hi,

I'm on methotrexate and steroids too, and had a quite alarming hair loss initially, but it does seem to slow down and get better, so don't despair.

Having your hair a bit longer helps, and my hairdresser is helpful.

Talk to your specialist, he may be able to suggest additions to your diet. Lots of green vegetables are never a bad thing.

Chin up

Good luck

stickywicket

Hello Corrig. I just wanted to say welcome to the forum. That's a reassuring first post as I know a lot of people are concerned about hair loss with meth. I don't find mine drops out to any noticeable extent.

Hayley1968

Hi I'm a hairdresser but I specialise in hair lose I'm a strength in style consultant and a hair in recovery expert which means I've worked and trained with Macmillan and tricologists and an expert in extensions for hair lose and wigs. So if ican be of help to anyone just let me know even though I cannot cut hair as I've had 3 op due to arthertis in my hand just out of a cast from trapezectomy I have a lot of knowledge I've also posted on work matters forum as worried about pressure to sell my business if anyone old help me thank you