Re: I'm back - Kathleen

[Guest guest]

" 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

[Guest guest]

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

hair

> loss?

HAIR LOSS HOW DOES A CUE BALL SOUND.HAHAHA I lost all my hair in

March of last year from Cytoxan and it is now growing back but curly

and darker. I use to have straight hair all my life and its alot

finer. But I just started back on higher doses of Cytoxan so it will

probably fall out again. I fell apart over it and cried for weeks

and then realized it was just hair but it was my hair.

Where in Texas do you live. I live between Port Arthur and Beaumont

in a town called Groves. I went to the ENT this morning wishing for

a throat infection just so he wouldnt tell me that I had still just

the RP flare. I wanted antibotics again instead of predisone but no

luck he gave me a medro pak to see if it will help. The throat is on

fire and now the other ear was jealous so it decided to turn red and

hurt also.

If you have been reading the posts the Oregeon group is getting

together for lunch and I have been so jealous. Heidi said she is

coming to Texas soon for a Dr. appointment in Plano I think and I

told her even if I have to ride 6 hrs. to see her I will. I was

going to get with the only other one I know from Texas and

see if we can all meet.

Hang in there and I will pray that your RP will go back in hiding

real soon. Hugs and prayers, also in Texas

Did you have to flee from the hurricanes also?

[Guest guest]

Kathleen,

I can relate to everything you are saying. When my dad was in ICU

and I was in the waiting room my brother yelled out across the

room " WHAT KIND OF AUTOIMMUNE DISEASE YOU ACT LIKE YOU HAVE " and

every face turned to me like I had some kind of deadly catching

disease that they might get.

Whenever someone hears that I am on a chemo drug they want to know

what kind of cancer I have and when I say I dont its and autoimmune

disease they act funny also. So you cant win for losing.

I was going to physical therapy a couple of weeks ago and my sons

girlfriends mom called looking for her and I said I was on my way to

therapy. Well she thinks now that I am in mental therapy for my

nerves She asked her daughter what was I in therapy for. So you see

no matter what I say or do I always come out on the bad end.HAHA

Oh well I just keep on laughing and go my merry way. Hugs,

[Guest guest]

> Where in Texas do you live. I live between Port Arthur and Beaumont

> in a town called Groves. I went to the ENT this morning wishing for

> a throat infection just so he wouldnt tell me that I had still just

> the RP flare. I wanted antibotics again instead of predisone but no

> luck he gave me a medro pak to see if it will help. The throat is on

> fire and now the other ear was jealous so it decided to turn red and

> hurt also.

> If you have been reading the posts the Oregeon group is getting

> together for lunch and I have been so jealous. Heidi said she is

> coming to Texas soon for a Dr. appointment in Plano I think and I

> told her even if I have to ride 6 hrs. to see her I will. I was

> going to get with the only other one I know from Texas and

> see if we can all meet.

> Hang in there and I will pray that your RP will go back in hiding

> real soon. Hugs and prayers, also in Texas

>

> Did you have to flee from the hurricanes also?

,

Hi, I am in North Texas. In fact, I live in the town right next to Plano! No

hurricanes this far north. I hope that you weren't too troubled...

Let me know about the lunch plans. That sounds like a lot of fun!

Kathleen in Texas -- I remember there was a Kathleen in NY; is she still

here?