Re: Re: I'm back - Kathleen

October 7, 2002

> " Anyway, I do have a question. Do any of you have trouble with hair

> loss? I know that MTX causes hair loss, but I haven't taken that. My

> hairdresser said that my hair is very thin and not all well. I

> stopped taking the pred in June, after tapering -- not cold turkey.

> Could that be affecting me in Sept./Oct.? It's like the hair shaft

> itself has thinned. I also am having scalp pain and the little sores

> seem to be coming back. Any comments, advice? "

>

> Hi Kathleen!

> I have a struggle with hair loss. Now it is related to the hair

> loss, but before, Dr. Buckner told me that it is common for people to

> lose hair when they are really sick. Before all of my meds kicked

> in, that was me and my hair, which is unusually thick, really thinned

> out! The " texture " of it has also changed a great deal. I hope this

> experience is helpful.

> Take care and it's good to hear from you, although I wish your wish

> that you didn't need us because you didn't have RP would be true!!

> Take care,

> M

,

I am afraid that going off the steroids has made me sicker maybe than

before... I sure feel lousy.

Thanks for sharing this. I am concerned and so was my hairdresser. Although

I wish I could replay the conversation I had with her! I told her that I had

been taking steroids, maybe that is why my hair is so ill? And she says why

were you taking steroids. I told her I had an autoimmune disease and she

just says, " oh " . Now I am thinking she thinks I have AIDS!!!!! She didn't

say another word and AutoImmune does start with AI and add disease and you

have AID! YIKES!! I wish I had said RP. Have you guys had this problem?

People probably don't know what autoimmune means, do they? Now I'm afraid

when I call to make another apptment, she is going to be VERY busy. LOL.

Kathleen in TX

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