Has anyone experienced a major increase in hair loss from taking azathioprine?

[Mishycake]

I’m on 50 mg of azathioprine and 10 mg of prednisone. Am I to blame azathioprine alone or the combination?

[Foggyme]

Hi Mishycake. Yes. I suffered burning scalp and dreadful hair loss when I first started Azathioprine. (GP prescribed Betacap for scalp).

It kicked in when I increased the dose to 50mg twice daily. On advice from rheumatology helpline, went back to 50mg for a further two weeks until the burning scalp settled, then increased to 50mg twice daily again. The burning scalp didn’t return and the hair loss gradually settled down once my body learned to tolerate the Aza.

It you're worried, might be worth speaking to a helpline rheumy nurse (if you have one), or checking in with your rheumatologist (if you're able to do so - some fare better than others with these kind of contact arrangements). Or your GP if it gets worse or you have any other unpleasant side effects.

Pharmacists are also a very useful source of information and support if you get struck for advice.

Hope things settle down for you 👍

[Fighting]

I have never taken azathioprine. I have hair loss but it occurred primarily when the diagnosis was discoid lupus. It fell out in clumps. Then I started wearing hats to avoid exposure to the sun. The saga goes on and on.

[Eternity6]

Without a doubt yes. I used to have very thick hair since taking azathrioprine plus pred my hair is frazzled I get so upset about it. As it’s just another thing to contend with. To me it doesn’t seem like hair it’s just a thin mess. I’ve tried every product you can think of to try n sort this out n make it appear to look thicker. But to no avail. I’m on 50mg Aza n 5 mg pred. Have been for many years. Started first on Aza 75 mg

[Mishycake in reply to Eternity6]

You and me both sister. What I have found that helps me regrow hair is using the Nioxin shampoo and conditioner. I use the number 4 and have been for a few years. It’s been great at helping me when my disease finally went into remission last year and I wasn’t on anything my hair grew back down to my back.

[Eternity6]

Wow really my hair is like a frazzled mess hate it so much do you get this on amazon

[Mishycake in reply to Eternity6]

Yes I went to a salon a few years back and talked about my hair thinning due to medications and the stylist told me about it and I never used anything else since then it’s been really helpful in my journey through all of this. They have some deals on amazon for it let me find you the link!

So nioxin has 6 different systems which just means for 6 different types of hair. The one I use is #4 because my hair is color treated and progressively thinning. If your hair isn’t color treated then you’d pick a different system.

Hope this helps!

amazon.com/dp/B078YGKR6S/re...

[Eternity6 in reply to Mishycake]

Thankyou so much, do you suffer from nausea from azathrioprine n prednisone I’m so fed up of having nausea with these tabs

[Mishycake in reply to Eternity6]

So I started the azathioprine back up in March because my symptoms came back and all of a sudden started losing all my hair again (the reason for this post) which I was so proud to have grown back.

I love my hair too much and was literally depressed to see it go like this so I stopped the azathioprine since three weeks now, really no withdrawal or anything from that... but yeah when on it I wouldn’t feel great. Once I read it was a cancer medicine I started getting more upset about every single tab I’d put in my mouth. Ughhhh these medicines suck.

But I have managed to come down to 5mg of prednisone since and I feel fine. Phew. Pred gives me tons of insomnia and anxiety though. And my mom says it makes me mean

[Eternity6 in reply to Mishycake]

Totally agree I’ve been on aza for years I’ve come down from 75mg to 50 mg but feel so nauseas yes heard used to be used as cancer drug, I hate pred too but every time I taper down to under 5 mg I have flare

[Mishycake in reply to Eternity6]

I feel your pain there are definitely days where I feel sick to my stomach. My doc once had me taper from 5 to 0 and this was in the beginning when I didn’t know anything about my disease and flare ups. I flared so badly and had to start over and I didn’t even realize I had to taper much much much more slowly (especially when you’re in the single digits) until much later because of course doctors don’t admit their mistakes. I feel like so many years of my autoimmune issues have been spent on a learning curve.

[Eternity6 in reply to Mishycake]

Yes that’s true,I’m forever learning