Re: well more bad news todays from rhuemy

[Guest guest]

,

This is wonderful news. It sounds like you're finally in the hands of someone that will treat your sarcoidosis with the seriousness you deserve.

Cellcept is like the Enbrel or Humira or Remicade. It is a BRM-- Biological Response Modifier, and helps to stop the production of TNF-B-- the one we produce too much of. It is more specific in that it only stops the production of this, instead of blowing out the whole immune system-- so it's a better choice.

I was surprised that they hadn't had you stop the Imuran when you hit such a low WBC--

so, this week, visualize your white cell count coming back up, and know that you are on the right track.

Take care,

Tracie

NS Co-owner/moderator

Subject: well more bad news todays from rhuemyTo: neurosarcoidosis Date: Tuesday, April 7, 2009, 3:28 PM

I had a wonderful visit with the rheumy but not so good news .. my wbc is ever lower than 1.0 since 1 and half weeks ago.

she stoped the Imuran right away and is starting to wean the steriods already. she gave me a script for Cellcept. She said she wants a wash of the Imuran for one week than start the Cellcept. She said wear the mask when i go out .. she said if i start to feel sick to call asap. and i will have to go on iv antibodics.

She said the progression of the NS is no longer stable with the Imuran so she said now onto more powerful drugs. As i heard with cellcept is very risky.

but agreed to the drug.

i have to have xrays of my arms and hands and feet and legs. she is very smart when it comes to NS. she has been treating it for 4 years in this office with my neuro. so made me feel so comfortable and took all my concerns to heart and said when NS progresses to the point you get it in your muscles it can be rough hard road upward. she said so many of her NS patients complain of the arm and leg pain and weakness at this point. she is also concerned about kidney problmes . she is running some kind of blood test that has to do with the mucles. i had the blood work done there so she said she will call me with all the results soon as they come in.

other than my Neuro i'v not seen a dr who new so much about NS.

I will keep intouch with all the results as they come in and when i start the cellcept. and if anyone out there who had cellcept please give me some input. or if you tracie know about cellcept.

I hope this letter finds everyone a pain free day and love to you all

Many Blessings A.

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