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General health

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Original poster

methotrexate - hair loss

25 replies

sixlostmonkeys · 30/07/2007 15:04

Don't suppose anyone has any experience of methotrexate?

I've been on it for 2 weeks and woke up this morning to discover I'm losing my hair - BIG bald patch.

I'm going to see the nurse re this, but in the meantime I was wondering if anyone has suffered the same and could tell me when/if the hair grows back?

OP posts:

dissle · 30/07/2007 15:07

Think that it is a side effect, one of many unfortunately.

Its a very effective drug for psoriasis/skin conditions but has some pretty awful side effects.

HedTwig · 30/07/2007 15:10

what dosage are you on?

DH takes methotrexate but low dosage as it is to manage PsA ... he built up very very gradually and is now on 12.5mg per week

HedTwig · 30/07/2007 15:10

but it is also a cancer drug at high dosage

at low dosage you must take folic acid day after too

Original poster

sixlostmonkeys · 30/07/2007 15:11

I'm on 7.5mg per week, so low dose

OP posts:

Original poster

sixlostmonkeys · 30/07/2007 15:12

I also take folic acid every day 9apart from the methotrexate day)

OP posts:

HedTwig · 30/07/2007 15:18

well I think I'd definitely talk to the consultant because that seems rather low for such a strong side effect .. DH hasn't had any issues but does need regular blood tests

I would say he has had adverse reactions to other drugs ... and it is very much trial and error to discover which particular drug an individual will tolerate / benefit from

HTH

HedTwig · 30/07/2007 15:20

re folic acid .. DH had to get a special prescription for a 5mg dose that was not available OTC ..

is it for an arthritic condition?

Original poster

sixlostmonkeys · 30/07/2007 15:23

I too was thinking it's rather a drastic side effect - I'm still in shock to be honest.
I would have coped with thinning better that this big bald patch - thinking along the lines that thinning would be more manageable until dosage adjusted (or something)
I'm in quite a state, worrying - will it grow back? will i lose all my hair?

OP posts:

Original poster

sixlostmonkeys · 30/07/2007 15:24

it's for rheumatoid arthritis

OP posts:

HedTwig · 30/07/2007 15:27

I think losing clumps of hair is a serious side effect .. why don't you call your rheumy today?

DH tried 3 or 4 drugs before finding one that didn't give him bad side effects

seriously there are loads of different regimes to try .. you need rheumy's advice

HedTwig · 30/07/2007 15:29

sulphasalazine was great for him but he got dermatitis so had to switch

I'm sorry .. its a trial isn't it?

is this the first DMARD you've tried?

Original poster

sixlostmonkeys · 30/07/2007 15:32

I'm waiting for a call back from the nurse at the hospital - their system is that i call and leave a message and they get back to me.

I'm reading around the net now and so far I'm discovering that hair thinning is fairly common, but so far I haven't come across any mention of complete bald patch.

I'm due to take the methotrexate tomorrow - I really don't think I can contuinue with it

thanks for talking to me hedTwig

OP posts:

HedTwig · 30/07/2007 15:36

you're welcome .. others have done the same for me

are you aware of all the different DMARDs you could try? here's a list of the most common although I wouldn't expect you'd be able to get the biologicals like enbrel and remicaide (if they're on there)

Original poster

sixlostmonkeys · 30/07/2007 15:37

I've had a few 'let's try this' meds before - can't recall the names at the mo - one was a malaria treatment.
Other than that I've just been on strong pain-killers.

this is the first serious attempt really. they did all the tests prior - to which I discovered I'm bloomin healthy in every respect apart from arthritis

I'm waffling aren't I?

OP posts:

HedTwig · 30/07/2007 15:40

I have this theory that with auto-immune diseases people tend to be horrifically healthy apart from the auto-immune disease .. ie don't catch colds / viruses easily .. I think it might be because their immune system is in overdrive anyway

but that's my uneducated theory I don't know if it holds any water

Don't despair sixlostmonkeys one advantage is that its such a common disease there are many drug regimes, that have been well tested, to try

as well as alternative therapies too of course

Original poster

sixlostmonkeys · 30/07/2007 15:47

It's funny, I have the same theory. When it was all explained to me at the hospital I did comment "could this be why I never seem to get colds, flu, chest infections etc etc whilst all around me are dropping like flies?"
They didn't acknowledge this as a possible fact, but it makes you wonder.

I'll try not to get too upset - the prof I'm under appears to be one of europe's best.

The daft thing is, I think I could have coped with some of the other side effects, sickness, the runs etc, but discovering this bald patch has just knocked me for six - and lets face it, no hair isn't painful or anything, it isn't an illness that stops me from looking after ds...

OP posts:

HedTwig · 30/07/2007 17:38

don't minimise the psychological impact of living with a chronic disease, even a well-managed one (which yours isn't as yet .. but will be)

LilyLoo · 30/07/2007 17:40

my good friend takes this, recently her hair began to thin and then she got bald patches and she had to wear a wig for a short time. However it has now started to grow back. Not sure how long she has been on it, but definately years not months.

Weegle · 30/07/2007 18:49

I take methotrexate for Anklyosing Spondylitis (similar arthritic condition to RA). See what your consultant says but this drug has a very long time before it takes effect (3 months at optimum dosage) so I would think it also unlikely that such an extreme side effect could show in 2 weeks. Are you very stressed out/worried? The two may be unrelated and the hair loss is related to stress not the drug.

Original poster

sixlostmonkeys · 30/07/2007 18:54

I am very very very stressed (have been for quite some time now)

Do you think the doc would know what has caused it?

OP posts:

jules99 · 30/07/2007 19:19

This reply has been deleted

Message withdrawn at poster's request.

Weegle · 30/07/2007 20:37

Alopecia (hair loss) is not unusual when you are highly stressed at all - I'm really sorry to hear you are so stressed. I would suggest you actually pay your GP a visit. I have two friends with alopecia, both stress related. The fact you describe it as one clump rather than thinning would suggest it's not the drugs, but I'm no expert. All the best, hope the GP can give you advice.

ChorusLine · 30/07/2007 20:50

Hi Six

I took 25mg a week as had very severe psoriasis for over ten years. I too lost hair especially as I had a full scalp of psrioasis. It did grow back as soon as i realised it was disapearing - but it was also could have been beacuse I was pregnant. My mum takes it for RA too.

I have been back at specialist today as I am now on Enbrel an injection and have lost lots of hair on this - but having a pants time at the moment so the doctor said it could be coincidence.

Before I went on Methatrexate I was on Cyclosporine (sp)?. Which made me feel very sick. I agree wit your theories also HedTwig.

Chat on here six and let us know how you get on x

HedTwig · 31/07/2007 08:39

Chorusline .. you were pregnant whilst taking methotrexate? I thought one wasn't allowed to conceive whilst on methotrexate (either partner) ... did you have any issues with doctors re planned pregnancy / actual pregnancy?

Original poster

sixlostmonkeys · 31/07/2007 12:01

Thank you all You have all helped so much.
I was in quite a state yesterday, but i have calmed down a bit today.

I'm still waiting for the return call from the hospital and I shall be making a doc appt (I go for a blood test today anyway)

I'm tending to agree that it is stress rather than the meds.
Mixed feelings really - but at least if it is NOT the meds I can continue with them and hopefully attain a life of less pain.

It was only when I was asked here "am i stressed?" that the penny dropped. Really daft because I knew I was stressed but until I typed out loud I guess I hadn't acknowledged it.
It doesn't surprise me really that my body has reacted in some way to the stress - thinking about it I reckon I've (my body) has done rather well in holding up for so long.

My reaction to the hair loss has shocked me. Maybe I'm just too logical a person, but I'm telling myself that logically it's not a real problem - so why did I crumble so much?

I'm certainly going to work on ways to de-stress now - it would be nice to be happy again

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