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Hi everyone,

I just talked to a bit ago and wanted to let you

know how she is.

She said that she had seen a doctor almost every day

this week. Yesterday her rheumy from Houston came to

her town so she was able to see him. He had never

actually seen her with an ear flare before...but he

did this time. She said her ear is purple at this

point and the dose pak does not seem to be working.

Anyway her rheumy said he thinks it is RP affecting

her shoulder and her jaw, besides her ear.

The ear is so bad inside and out he is worried about

her losing her hearing. He does not want her on

prednisone because of the high blood pressure problems

and high blood sugars that she has been bothered with

since the prednisone pulse last year. He will

re-evaluate her after she finishes the pak and perhaps

put her on a low dose of pred.

What he has already done is to triple her dose of

cytoxan. said she had a real pity party

yesterday....told her she should have invited

me....but she is feeling better emotionally today,

although it is hard. To think of how sick she was on

1/3 the dose, plus losing her hair again.....just

hard!

Please, if you pray, do it for ! She hasn't been

reading many of the posts this week, so maybe someone

would like to snail mail her a card.

Take care! Love, squeek

=====

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