Good evening, I need to rant really I started meds almost year ago December, I started methotrexate first but due to the awful side effects they swapped me onto leflunomide, dare I say anymore but the hair loss had been tremendous I mean I stopped taking any since December as the consultant told me that’s the reason I had hair loss but it’s coming out even more than before. I started sulfasalazine in January.
Hello Paula, I'm sorry you're going through this. I already had quite significant hair loss (likely autoimmune connected) before I started treatment and although it has progressed in the last four years I really can't say that I can relate it to mtx, lef or ssz ... although I can attribute many other things to them! LOL.
What immediately comes to mind is that if you had two DMARDS and had to stop because of side effects (or inefficacy) you are part way to qualifiying under the NICE guidelines to starting a biologic. Has your rheumy talked to you about this? You also have to have a certain number of swollen and tender joints but if your PsA is active or you have bad psoriasis this generally isn't too much of an issue. I don't recall ever having read or heard about bio's contributing to hairloss.
To come back to the hairloss, what I do know is that the hairgrowth cycle is such that hair loss is the reponse to something which can have happened several weeks or months previously so it could be that this shedding will slow down and then once the folicles have gone through their resting stage will regrow strong new hair.
Something else to check with your GP (I assume they do your monthly blood tests?) is that you have got good ferritin levels. This is your stored iron level and in pre-menopausal women is notoriously low even when it is still clinically within 'normal' levels. If you're at the low end of the range it might be worth asking if they would consider giving you a supplement for a couple of months because of your hairloss. Or (but check with your doc before taking) a good OTC alternative is Floradix Multivitamin Liquid with Iron.
Having been through all this I have loads of practical experience with all kinds of products etc but it's way too much to type out here so if you want to ask about anything or just talk through some of the cosmetic disguise options then feel free to message me and I'd be delighted to help you. JulesG
Thank you so much for the advice I suppose I will have to get used to it but before I started any treatment I had thick hair so it’s come as I shock to be having such thin bad condition hair. I’ve been having it cut regular to help it look better. When I’ve washed my hair strands just come out and it happens during the day as well.
I have my bloods done every two weeks so they can check the levels doctor said the last lot were low on the iron but not enough for tablets but I will ask again as it doesn’t seem right to me.
It's horrible losing hair. Last year I lost a lot of hair due to psoriasis (though other causes were considered before coming to that conclusion). I had completely bald patches, big ones, some on the top of my head. It really got to me. My rheumy had a hunch that the all-over psoriasis flare & therefore the hairloss was actually due to stopping Mtx and that proved to be correct because at the magic 6 - 8 week period after re-starting Mtx my psoriasis cleared up very quickly and my hair grew back thicker than ever.
A different tale from yours but what I do know is that when you lose hair you feel as if it'll never come back, but it can. As Jules says, as Mtx leaves your system there is likely to be a time lag before you will know whether your hair will recover, so fingers crossed for you. If it begins to look as if Lef and or Sulfa have had the same effect then perhaps a biologic would be considered. My rheumy, somewhat to my surprise, said that he considers significant hairloss in women to be a serious matter so do emphasise to yours just how much it upsets you.
Incidentally, I have 'heard' (i.e. online) quite a few women say that they lost hair initially on Mtx (not so sure about Leflunomide or Sulfasalazine) but that over time their hair grew back even though they stayed on the drug.
Thank you it’s not right as I can just pull loads of hair out by putting my hands through it, I’m going to ring rhemy first thing and pop to my doctors as I cannot face loosing all my hair I’m hoping it’s not caused by sulfasalazine ad rhemy nurse said she didn’t think I would still suffer.
I had what I considered significant hair loss on mtx. I talked about it with my doc and she put me on a biologic and decreased my mtx. It has been a month since the change and I now have regrowth in the thin spots I was getting. At my appt on Tuesday she told me the goal would be to eventually get off the mtx completely.
Thank you, yes I only stopped mtx in September and Leflumonide in December so I know I can’t expect full growth yet but certainly gets me down. I won’t qualify for biolics as I need two or more swollen joints, nurse explained last time and said I will just have to take paracetamol and regular injections into the joint.
Aha, you're in the UK. Blasted NICE guidelines! I guess not having two or more swollen joints has got to be a good thing, at least. There again, although this isn't exactly the main point of your discussion, how joints are assessed does vary. I can't remember how many swollen joints I had when assessed for biologics but the rheumy nurse found quite a few more than my rheumy did and he'd already found more than I thought I had!
I guess you're going to have a bit of a wait & see with your hair. But then if, in time, you feel you've exhausted all the DMARD possibilities and aren't where you want & need to be perhaps a referral to one of the UK centres of excellence for PsA might be in order ..... swollen joints don't necessarily have to be big and obvious to be swollen & a really expert eye might just see more.
paula said:
Thank you, yes I only stopped mtx in September and Leflumonide in December so I know I can't expect full growth yet but certainly gets me down. I won't qualify for biolics as I need two or more swollen joints, nurse explained last time and said I will just have to take paracetamol and regular injections into the joint.