hair loss?

[GinnyMa]

My diagnosis with MPA was confirmed in January 2022. In March I had 4 infusions of Truxima, and have been tapering prednisone from 60mg to 5 mg. Sleeping better now and prednisone brain has disappeared. BUT, now my worry is hair loss!! My rheumatologist said this can occur with a systemic disease, but will improve. Has anyone had experience with this?

[Grizzly-bear]

So I had hair loss on my head with Prednisolone and hair growth on my face. I’m a 32 year old woman and don’t usually have a moustache. I’m very thankful for Prednisolone but I do call them my grinch pills because that’s exactly what I feel they’ve made me look like. Odd weight distribution, thinned hair on head, hair growth on face. Delightful.

My hair was very thick to start with so quite lucky in that sense but I’d say it’s literally about 40-50% thinner than it was before Prednisolone.

I’m also on rituximab but I know that Prednisolone is the thing that can affect hair growth and thinning rather than rituximab.

I’m guessing after a while on lower doses it could come back to it was before (or maybe this is it now), but I get a huge hit of methylPrednisolone every 6 months for my

Rituximab infusion and then have to taper back down again so don’t feel like I’m ever going to be on a low dose long enough to see if the appearance issues can resolve. Every day I can pick up hair from my floor that looks like a birds nest or a large hedgehog.

If I’ve got to look like the grinch to be alive then I guess I’ll take it!

[alybill in reply to Grizzly-bear]

I experienced hair thinning and loss, my hairdresser was the first to let me know. In my case the hair loss was due to low level of zinc. I doubled my vitamins and bought shampoo and conditioner especially to combat hair loss. I now have little tuffs of hair growing but it remains thinner but I’m ok with that.

[irishponies in reply to alybill]

Hi, please see my message to Grizzly-Bear.

[irishponies in reply to irishponies]

Hmm, I wrote a few comments but they are gone...

[citygirl1234]

Hi GinnaMa, glad to hear you are sleeping better and the pred brain has gone. I have GPA and have hair loss / thinning. My rheumatologist said uncontrolled vasculitis was likely the cause, but that the medication to treat it can also make it worse initially (so basically take it on the chin for a bit). It was hard to come to terms with initially but I have found that the hair thinning / loss has improved as my vasculitis has, it takes some time though (~6 months). My hairdresser was actually the first to notice it was improving as she spotted lots of “new growth” hair after I got it cut. I found changing my hairstyle helped hide it. You can also try supplements like biotin or folic acid to help with regrowth (check with your doctor first in case it interacts with your meds) and there are some shampoos that can make it look thicker. Hope this helps.

[LoveInTheMist]

Hi Ginny, I have also experienced this.In 2018, I had GPA and I had IV Cyclophosamide, followed by oral tablets.

A lot of my hair fell out but at the time I was so ill I did not care.

When I came off Cyclophosamide, the hair gradually grew back and it is as thick as before.

Mary Baker

[DorsetLady]

Hi,

I posted this on the PMRGCAuk forum some time ago, which I know you were on, not sure if you still are, but easy enough to access -

healthunlocked.com/pmrgcauk...

Also from FAQs on that forum more discussion (including above) -

healthunlocked.com/pmrgcauk...

[PMRpro]

It is very common for hairloss to follow severe systemic illness - and it often takes up to 6 month to become noticeable.