Hair Falling Out

[Eve]

Not sure if anyone can help but I went back onto methotrexate after a few months off due to elevated liver enzymes. They are now back to normal and I did a 15mg injection on Thursday evening.

Today I've noticed that my hair seems to be falling a lot, not clumps or anything but I just keep finding hairs which have come out without anything that would seem to cause it, one or two mainly and a strand or two seems to come out if I run my fingers through it - have left it alone since.

Could this happen so soon after re-starting methotrexate? I can't remember it happening before and I was on 25mg injections for a while.

I have been quite stressed recently but nothing major, more struggling and looking to cut down my work hours and such. Maybe that hasn't helped.

Bednobs, or others on RA drugs, I've got my consultant appointment brought forward to a few weeks time and they have said about looking at biologics if you have any advice. I've heard on a forum about some people being given a choice.

Thanks for any help.

[friedgreentomato]

That sounds like normal hair loss tbh, it happens to me all the time - hubby calls it moulting!!!!

[Eve]

I'm hoping it's just a random thing or I've noticed it more. I have very fine hair and it does seem to come out on brushes and clogging the drain in the bath (wash it every day). It was a bit weird, was just sat reading a book and kept noticing hairs which seems to have fallen out, was worrying me a bit.

I asked the chemist when I went to pick up a prescription and she said it can happen given the type of drug, makes sense as it's used in much high doses for treating some cancers. She wasn't sure if it could happen so soon though. Thought Sqad or some of the other RA people on here may have an idea.

[friedgreentomato]

Well I can only go on my own hair loss of course as I am not an expert - and whilst I am on some medication my hair has always fallen out in these high amounts.

[Eve]

I'm going to keep an eye on it, just the last thing I need to have more issues with these drugs, just need to get settled on something that helps without too many problems.

I'm hoping I'm overreacting.

[Tilly2]

I think it's a seasonal thing. My hair seems to fall out more in autumn.

[Eve]

Ah, maybe, I've never noticed but sounds a better reason to me :)

I know it has had an effect before as my hair growth slowed down all over when I was on it before which, although I'm trying to grow my hair out from a shorter style I had, was nicer elsewhere!

[bednobs]

regarding the biologics you need to think about how they are given - if they offer you an infusion, how often will it be? will you be able to get to the hospital when they want you to go? if they offer you injections you get at home, will you be in to accept delivery?
i am not a doctor but with your health woes, i have long thought you should be offered biologics. Just wanted to remind you about asking about pregnancy if that is a concern to you.

[Eve]

Thanks bednobs. I've always had a strong maternal streak but it is though I'm getting to the point where I'm less and less sure whether I'll ever get to some kind of level of normal that I could even consider pregnancy (let along getting out to actually meet someone). I'm struggling to look after myself at the moment, let alone anyone else. Are there any drugs you can take safely through pregnancy? I know methotrexate is one you have to stop for a long while before trying to conceive.

At the moment I just seem to be trying to get through work a day at a time and struggling big time. Got another OH review pending.

I'm really hoping whatever biologic I end up on makes a difference. It's all been a bit one step forward, two steps back. They've brought my appointment forward though which I'm grateful for as the last steroid injection I had has worn off.

Delivery is a definite factor, especially with the building I work in. It was a big deal to get my methotrexate delivered last time by courier, going up and up managers. I don't think it would work with anything which needed storage in a fridge.

[tamborine]

Long hair fall out shows more than short in plugholes. If your hair feels less try cod liver oil capsules, ie 3pweek.

[Eve]

Thanks for that, I'll pick some up if I keep noticing it or my hair feels thinner. It's so fine anyway.

[bednobs]

my GP surgery used to accept my deliveries and refrigerate them for me (but then i don't know if you will be able to get to your GP surgery to pick them up of course!). One of the companies used to offer a service where they had your key and would come and put them in your fridge for you if you were out when they delivered. Not ideal, but perhaps an option?

Leflunomide was the drug i was thinking about regarding pregnancy. I think you are supposed to be off it for 2 years before conceiving. About 2/3 of women get some sort of remission of symptoms during pregnancy, although the downside of that is that symptoms come back with a vengance afterwards. All drugs during pregnancy are a case of weighing things up, but there are several it's ok to take. I took pred all through all of my pregnancies, and if i hadn't had them all so early (!) i would probably have taken azothiaprine in the third trimester. Don't close the door - you probably have at least 10 years of childbearing left! i wondered how i would cope, but we do, we just do. things are not ideal, they never are but we are managing

[bednobs]

as a plus side, when i started biologics, i was suddenly able to things i hadn't been able to do for years, and felt so fantastic. The one i'm currently on has made my blood result fabulous, buthasn't made me feel so super wonderful as when i started infliximab or enbrel

[Eve]

Ooh that's a great idea, hadn't even considered my GP surgery! They have been fantastic so I'll sound them out.

I think I'd lean towards something which is more frequent in case of problems, I'd worry more about less regular infusions as it's in your system for longer (I assume) though I may be a little too jaded with the issues I've had on the DMARDs.

I'd like to leave my options open for pregnancy. I know that was a factor in them weighing up whether to put me on methotrexate, saying as I was so young, had no family etc...

I had heard of one of them being used in trials for Sjogrens and wonder if that would help with the problems I get with dry eyes and mouth. My eyes have been really bad lately, I think made worse by central heating and people having more windows shut at work. I have wondered whether adding hydroxychloroquine back in would help.

[Eve]

Sorry, phone rang, damn sales call!

Was taken off it when I started getting blurred vision but if it's the arthritis and wasn't the drug then maybe scope for that as it's meant to help those kinds of symptoms I think. I don't have Sjogrens, don't have the antibodies, but told the sicca syndrome is similar.

That's encouraging about pregnancy. Physio is helping me get some strength back round my knees and hips so hopefully that will help with walking better.

I just pray something will help with the fatigue, it's a bit overwhelming at the moment.

[bednobs]

hey i'd love to chat with you away from here - do you have a throwaway you've used before?

[Eve]

I did have one but not sure if it's still working, hang on, will check...

[Eve]

It's: [email protected]

[anneasquith]

its heartening to observe abers helping each other ;)

[Eve]

It is :) It's a godsend being able to speak to someone who knows what it's like.

Well, the hair loss has continued today, especially when washing my hair even though I tried not to rub it to much. Bought some cod liver oil tablets so will see how they go and keep monitoring it. Got a GP appointment on Friday anyway so can mention it then if still happening.