Hairloss advice needed please

Has anyone had to come off methotrexate due to hairloss. Every time I wash my hair Im losing handfulls. This is making me feel very upset now. I use good salon shampoo, take vitamins and folic acid 6 times a week. Don't know what to do but its really making me depressed.

[becky26]

I am on MTX and have had severe side effects although hair loss is not one of them (yet) but i wold go back to ur rheumatoid nurse and they will be able to change your medication for u

[Freesia]

Hi

I started on MTX before Christmas last year and I also suffered hair loss almost straight away which I was really upset about. I called my rheumatoid nurse and saw my doctor and stopped taking them and then I saw the consultant and was prescribed leflunomide which I have been taking ever since and have had no side effects.

I knew it was the MTX because as soon as I stopped the hair loss became less and less and then stopped. I understand how upsetting this is.

[sallyeb in reply to Freesia]

This is exactly my experience - although I continued with mtx for years before anyone listened. I was told it was my age !!!!! I too am now on lefluomide with no reoccurance

[Hidden]

Hi Paula,

Sorry you are feeling so down, I can understand why though. I've had a little more hair come out when I wash it but nothing like you are experiencing. We are all different and maybe the MTX is gonna react with you in this way, shame really because you seemed to be getting on with it well apart from the hair loss. Hopefully they will be able to give you something different to the MTX that won't have the same side effect. The last thing you need is to get depressed from the side effects, the disease is bad enough on its own without anything else.

Let us know eat you Rheummy comes up with.

Sending you hugs

Mary x

[Hidden]

Hi Paulywoo, Whislt I took MTX I had the same happen to me, since on Leflunomide and Embrel I am not loosing anymore. Although still quite thin on the top, my hairdresser has recommended some new shampoo and conditioner which is designed for people like us and it is making a difference, in that it 'pumps' up the hair when blow dried.

[Hidden]

Thank you for all your replies, I really appreciate your advice. I'm going to think on it overnight and probably call the rheumy nurse tomorrow and discuss a possible switch. I've struggled with this decision because other than the hairloss I've responded really well to the mtx. I've tried to ignore the loss but I'm looking really patchy at the temples and when I look in the mirror I see light through my hair as it's become so fine. I've asked my husband what he thinks but to be honest I don't think he wants to upset me by saying my hair looks thin. Thanks again

Paula x

[helixhelix]

Hi there, I did start to lose hair when I first started on MTX but it settled down after a few months and is now as good as it was before I started (or maybe as bad, as never had brilliant hair). I can't remember how long you've been on it, but if only a short time then may stop. But if you've been on it for a while then there are other drugs around so might be worth a switch. Polly

[Hidden in reply to helixhelix]

Thanks Polly, I've been on mtx since May. I did wonder if the loss could be linked to the period before my folic acid was increased so I've stuck with it. It's a big decision to come off a drug which helps x

[Hidden]

I've just sat with my husband and he has agreed my hair is seriously thinning, especially at the hairline so I'm definitely calling the rheumy clinic tomorrow. I've had a look at the information on leflunomide and there appears to be no difference in it's effectiveness compared to methotrexate so I'll ask about giving it a try x x

[claireyj]

Oh Paula I really feel bad or you and can really understand how distressing it must be ...it really is my dread and its so odd how some people are effected and others are not ...I thought its usually people NOT taking 6 folic a week that get effected ?! I have only been taking methx for 8 weeks so early days for me , If it continues maybe you can ask to lower your dose of Methx or change your meds.... Really hope it gets sorted for you poor thing ...thinking of you Claire x

[sciqueen]

Hi Paula

you are not alone, I suffered hair loss immediately when I first started to take mtx. Switch to injectable mtx, for some reason i've never suffered hairloss when taking injectable only on the oral. Perhaps others could confirm this?

You can also suffer hairloss with lef, but I think its more common witth mtx.

Good luck hun & I feel it for you, Hopefully the hair loss will slow down for you

Joanne x

[2plus2]

Hi Paula,

Three months after stopping mtx my hair is still falling out and my hairdresser can't see any new growth. I came off mtx after three months because of my hair. Tried sulphasalazine but no luck there so now on enberel. Leflunomide was discussed but with my hair problem rheumatologist decided it wasn't worth the risk. My hair is very thin people don't notice but I certainly do, I took in a bag of what I loss in a day to show how much was falling out.

Hope you get it sorted soon putting up with RA should be enough for anyone.

[Hidden]

Thanks everyone, as usual all your problems have been treated differently with varying results. It just makes the decision on what to do so hard. I suppose what I've decided is not to continue pretending everything is ok. I've mentioned hairloss at my last two appointments but felt it was brushed aside...pardon the pun. Anyway I think the time has come to ask for answers. I'll let you know how it goes. x x

[helixhelix]

I've found that my rheumy is really focused on the condition of my joints, and how I'm feeling emotionally and things like being worried about my hair are just not on her radar! So unless you jump up and down and make it very clear that this is just too much for you they'll probably try to ignore it - especially if your rheumy is an older and already bald man perhaps? At my last appt when I was moaning about side effects the rheumy basically shrugged and said "but your joints feel better".... Px

[Hidden]

Hi Paula

So sorry about your current problem, it's absolutely devastating isn't it. Mine was so bad my rheumy took me straight off MTX and had high daily steroid for a month as a bridge, and now I'm on sulfa with celecoxib and seem to be doing ok. Hair not growing back yet but not shedding as bad. I seem to remember that I was told the MTX can take up to 3 months to get in your system and up to 3 months to come out. Good luck and fingers crossed you sort it out. Liz x

[Giggle]

Hi yes I had the same problem with methotrexate. My hair was coming out after I started the inj. I actually had a patch on the side of my head that was really noticeable. It was distressing at the time and id only been diagnosed with RA for four months. So I spoke to my consultant and actually stated i wanted to come off it. I was also experiencing other side effects from it My hairs fine now though, it did grow back. I hope you manage to get your views across. Lyndsey x

[Hidden]

Hi , I was on mtx then sulfa, then Leflunomide- be warned with leflunomide, My hairloss was worse I actually stopped taking it yesterday due to breathing difficulties.

I went to see a dermatologist last week who told me that the DMARDs were known for hairloss, and it was a toss between theses or joint pain. She reccomended Regain 5%. you can order online its cheaper- buy the mens tho, cos its stronger.

Also try taking Sillica from Holland and Barratt, it could help.

All the best x