I'll be seeing all of my doctors soon, it seems like. . . . I was wondering though. I was on MTX for 6 months, and switched over to leflunomide almost 2 months ago. I had noticed some slight hair loss in the summer, but when I went to the dermatologist for other skin issues, it was very slight, and she was inclined to think it was hormonal mostly. But now, 4 months later, I have realized that the hair loss is continuing. My hair is now noticeably thin on the sides in the front, but not on top on in the back. Because my hair is curly and used to be quite thick it isn't particularly noticeable to others and if my hair is loose it covers itself up.
But here's the thing. I'm 41 years old, and while I don't think of myself as particularly vain, clearly I'm feeling a bit self-conscious about my hair. I know that hair loss is listed in the side effects for both MTX and leflunomide. Has anyone experienced hair loss while on leflunomide? How bad did it get, and is there anything that can be done about it? Will it stop on it's own, or just continue?
BTW, I did find and make myself an awesome style of beret, in a few colors already. A wide headband WOULD cover up the area in the front, but I get headaches from wearing them. If anyone is interested, I can share the link for the sewing pattern.
Stoney, Iāve been on Arava for four months, and I think my hair is thinning too. You know what, though? I would gladly lose ALL my hair in return for a drug that stops my PsA. Unfortunately, I donāt think Arava is it.
Would love to know where you got your hat pattern.
If you scroll down, check out t-shirt wraps. You can find a cheap plain t-shirt and convert it. It looks pretty good, and is super easy, just cut and put on with a twist.
Oh that is really cute! When my mother had brain surgery a few years ago (at the age of 87 ) I made her some great soft and stretchy turbans from a website. Iāll see whether I can find it for you.
The t-shirt wrap is nothing short of brilliant! Love it!
Seenie
I made several of these in cotton/spandex t-shirt fabric, all different colours. They looked great, held their stretch, and washed well. When Motherās hair had grown back, she regifted them to ladies in her retirement home who had hair loss issues. Funny, she would give a person one and only one so that she could spread them around to more people. Itās a happy memory for me, thanks for that!
So I saw my rheumy today. She said the hair loss will continue as long as I am on leflunomide, but the medicine is working SO well. We are going to try to decrease to 3X per week, increase my folic acid from 1mg/day to 3mg/day, and add in biotin. Hopefully this will slow/halt the hair loss.
She offered me the alternative of injected MTX, as then I wouldn't be nauseous all of the time, but 15mg orally didn't really make a difference at all. Not really a winning deal, but I'm feeling fairly good, and the worst thing now is my wrists. those are OA.
Now I'll just be making a fashion statement. It was great. . . The doctor told me that the hair loss in the front wasn't too bad, and then proceeded to check for hair loss and get a bunch of hair out. But of course, it's not HER hair that is thinned way out on the sides and thinning a bit all around.
Hi Stoney. I saw my rheumatologist today and told her that the sulfasalazine and MTX were about as effective as candies. So she took me off of the Sulfasalazine and prescribed leflunomide. And so here I am checking out of courseā¦potential hair loss! I know this is a while back but did your hair loss get resolved and come back once you quit? Thanks
Iām actually still on leflunomide. Itās thinner that it was once upon a time, but overall itās not bad. Iāve been on it for seven years or so now. I also take folic acid with it. It drops my risk of mouth sores too.
Cynic that I am, I reckon be prepared to do your time on Leflunomide, if thatās what it takes, while frequently reminding your rheumy that actually you now qualify for biologic therapy.
My impression is that Leflunomide is more likely to be effective than Sulfasalazine. But in any case, if thereās even a whiff of side effects, get back to your rheumy, no hanging around hoping for the best with what is currently on offer. I think youāre past the stage of travelling hopefully, you now need to set your sights firmly on reaching the destination.
I had pre-existing hair loss/thinning when I started Leflunomide ā¦ it didnāt get any worse taking it although after a while it stopped helping with the PsA and going up to the higher dose caused other side effects that moved me off it and on to biologics.
Stick with it and keep asking about the bioās too.
Its been a yo-yo diagnosis. Rhuemy said, āI really expected you to be much better by now. The fact that the two Dmardās arenāt helping makes me second guess my diagnosis. Letās try Leflunomide for 3 months and then switch to a Biologicā. Then I was sent for hand and foot x-rays to look for CPPD. Which doesnāt make sense as my pain issues keep movingā¦consistently random. Really fighting a new fear of a new drug!
What do you take that to mean? If it means āmaybe you donāt have PsAā there are a few hundred people here who would beg to differ. The majority of us donāt get āmuch betterā on traditional DMARDs.
) I made her some great soft and stretchy turbans from a website. Iāll see whether I can find it for you.