Name of med

[GivenUp24]

I’ve been trying to find the name of a Jed a few people referenced start with an L. Luflamide or something.

Just got back from Johns Hopkins, nothing new except excessive hair fall out in a short period. Wants me to stay at 10 mg pred for now.

Worried the hair fallout is GCA symptom…☹️

[PMRpro Ambassador]

Leflunomide.

What medications are you on at present? Hair loss is a very common event, starting about 6 months or so after diagnosis. Some people lose hair with pred.

[GivenUp24 in reply to PMRpro]

I’m on 10 mg pred, beta blocker metropolol and famotidine. I never had any scalp pain or anything until recently and it’s also when hair started falling out…. FAST!

[PMRpro Ambassador in reply to GivenUp24]

So are you saying that scalp pain and hair loss started about the same time?

[GivenUp24 in reply to PMRpro]

Yes

[PMRpro Ambassador in reply to GivenUp24]

Have you discussed it with your doctor? Because that is concerning.

[GivenUp24 in reply to PMRpro]

I just left an appointment with my rheumatologist he told me to go to a dermatologist which I’m doing on Monday.

[PMRpro Ambassador in reply to GivenUp24]

He obviously isn't concerned then.

[piglette]

My hair fell out and the rest turned into a sort of wiry bird’s nest with pred!! It use to be straight and slightly greasy. It became frizzy and very dry.

[GivenUp24 in reply to piglette]

Mine is SUPER dry and frizzy…. What’s left of it.

[Gala123]

Did you stress to the rheumatologist that you have scalp pain? They might have just heard the part about hair loss. Worth checking again. Why are you interested in Leflunomide? Are you considering going on steroid-sparing meds? Again, there are a few and worth discussing with you rheumy. Unfortunately, many of them also have hair loss as a side-effect. Good news is that I hear hair grows back after tapering off pred, at least for some lucky people

[GivenUp24 in reply to Gala123]

Yes he knows about the pain, and I can’t take I’ve already had cancer.

[Gala123 in reply to GivenUp24]

sorry to hear that, you have been through a lot - hope you get the help you need.