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Methotrexate Hair Loss Options
Angela123
#1 Posted : Tuesday, August 20, 2013 1:14:37 PM Quote
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Location: Chelmsford
Hi, I am new to this site. I'm 60 years old, still working, and was diagnosed with RA in May this year.
I've been on MTX for 12 weeks now (15mg weekly) with Folic Acid 3 days later.
I've been doing well with just a bit of indigestion and tinnitus which doesn't bother me too much, but in June my hair started to thin, and during the last 2 weeks it's become very noticible. At first it was a few hairs in my hands when touching wet hair, drying etc, but now it's a lot, especially the day after I take the MTX when I get 2 handfuls.
The sides are extremely thin and my hairline has receded a lot. When my hair's wet and brushed back I look practically bald.
I can still style my hair by brushing a lot more forward, and strangely people don't seem to notice anything different, but of course I know what's underneath. My hair was very fine to start with, but it's turning white and dropping out. The hair that's left is extremely fine. I'd like to hear from anyone who has experienced this and what happened next. My consultant says it will 'gradually settle down' but I am distraught and can't sleep for the worry of what I will soon look like. Has anyone had to come off MTX because of hair loss - if so, what are they taking now? This worries me as a lot of the other meds have bad side effects.
Many thanks, Angela
claire-l
#2 Posted : Wednesday, August 21, 2013 12:16:03 PM Quote
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Dear Angela
Hair loss with Methotrexate was not mentioned out loud when Methotrexate was prescibed for me only in a leaflet. I experienced upsetting hair loss after six weeks and I was taking only two folic acid tablets per week. When I explained how I was feeling on 15mg and 2 Folic acid Tablets ie very tired as well and feeling all the time that I had bad cold, the folic acid was increased to 5 per week. Eventually the 5 made me feel a tiny bit better with the hair loss more managable. I hope that some-one will help you soon as I know this is a very upsetting side effect. Our bodies are very sensitive. I now take 6 folic Acid a week and do not feel so tired after taking the dreaded Methotrexate and my hair is behaving better now. This medication is very very stong but at least it is once a week. I have had R A for 3 years and had this medication for 2 and half years. I found this Medication seemed to be having a positive effect after about ten months.

Claire
Dorothy-W
#3 Posted : Wednesday, August 21, 2013 1:02:17 PM Quote
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Location: east anglia
hi angela,been on mtx 5+yrs, i am on 25mg inj now and yes hair loss is on the cards,i was tablet first still 25mg and nothing,had a good mane of hair and long but when i went onto injections it did start to fall out i am still on mtx 25mg and take foilc 6 days not on mtx day,my hair has settled down still comes out but if i get stressed or over tired boy its handfulls but i have now got it shorter and layered to give a full bodied look,have a chat with the nurses it will help you feel better,it does all settle down in time,i am not one to get worried about anything so hair loss didnt bother me too much but yes it is unplesant,like every other side effect it is only when it happens to you it gets talked about,i too got a leaflet when started mtx and told this is what you do,how to do it doc see you at clinic and off i went,now i have tinitus,hair loss,sensitive to sun and headaches,etc etc,aint it a b---h,all a learning prosses they say.....,dorothy
Louisa
#4 Posted : Wednesday, August 21, 2013 7:17:01 PM Quote
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Location: Suffolk.
You might find you need a higher dose of folic acid.

I lost a lot of hair on another drug called sulphasalazine. It finally all came back after I came off the drug, but it took a long time.

Angela123
#5 Posted : Thursday, September 19, 2013 5:38:01 PM Quote
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Joined: 8/20/2013
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Location: Chelmsford
Thanks for all the replies.
I have been taken off the Methotrexate.
Four weeks have passed and I'm still losing hair, but my doctor said it could be 2 months before this stops.
I feel a lot better in myself - I didn't realise just how tired I was feeling on the tablets and have my energy back.
The pain has returned to my feet and wrists but paracetamol is helping.
My doctor says it may be possible to try the MTX again at a later date with a smaller dose (??)
I'm worried about what happens next, as everything seems to cause hair loss.
I've lost more than half of mine, scalp is showing through all over. Can't wait for it to start growing.
Paul Barrett
#6 Posted : Thursday, September 19, 2013 10:40:04 PM Quote
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Joined: 4/24/2013
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Location: Hexham
Angela123 wrote:
Thanks for all the replies.

My doctor says it may be possible to try the MTX again at a later date with a smaller dose (??)



Hi Angela,

When you say 'my doctor' do you mean GP or Rheumy? If this is coming from your GP I would ask to see a rheumy to get their opinion. The problem is going to be that a dose low enough to avoid hair loss may be too small to have any therapeutic effect. There are plenty of other meds that can be tried. Have you tried anything else yet?

MTX is one of a group of drugs called DMARD (disease modifying anti rheumatic drugs) which also includes sulphasalazine and azathioprine. These medications have the merit of being cheap and in some cases very old drugs. That does not mean that they are not good treatments, I'm just making a statement of fact.

You may have seen mention of anti-TNF or biologic drugs on this forum. These are a fairly recent innovation and they come at a very high cost (£9000 a year is typical). That being the case the criteria under which they are offered to patients are strict and they include the fact that the patient must have tried and failed on two DMARD's.

What constitutes failure? Clearly, failure to treat the underlying symptoms would be one definition. Another is a set of side effects that are unacceptable to the patient. In other words, if you say no, that is 'failure.'

What I am actually saying is that any decision to use a lower dose of MTX is, effectively, yours; don't let yourself be pressured into a course of action that you are not happy with.

I had a very bad adverse reaction to MTX. That hasn't stopped it being mentioned a couple of times. My very firm no has been all that has been required to see those suggestions off.
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
LynW
#7 Posted : Sunday, September 22, 2013 8:24:43 PM Quote
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Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
Hi Angela

Methotrexate can have some very worrying side effects which are not always fully explained to patients. Unfortunately controlling disease has to be paramount as joint damage caused by uncontrolled disease can only be corrected with surgery such as joint fusions or replacements. Surgery is a route that is not particularly pleasant and is not always successful. While loss of hair is distressing it is actually a small price to pay for holding back a serious joint destroying disease that can also affect vital organs such as the heart and lungs. Other drugs do, in some patients, have similar side effects.

Your rheumatologist needs to look for the most suitable drug to match your disease pattern and act on side effects as a separate issue, such as increasing folic acid to 6 days a week. Taking pain relief does NOT control the damaging effects of the disease. Saying "NO" does not constitute failure in the eyes of the NHS! Failure is an "intolerance to the drug". It is also best to try the least harmful drugs first and there are plenty out there such as Hydroxychloroquine, Azathioprine or Sulfasalazine. That said Methotrexate is the gold standard drug used in the treatment of RA, so do consider a lower dose if that is offered. DMards can stay in the system for up to 4 months so please be patient for hair recovery!

All the best for a positive outlook

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

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