Re: Cellcept for pulmonary fibrosis

[Guest guest]

Sandy,

I do know that DR Whitman prescribes photopheresis....My friend had PF and

with photopheresis, it never worsened. You can get photopheresis at numerous

centers around the country...DR W prescribed it for me..for a different lung

issue, but it stopped by lung issue in its tracks..and 2 yrs off of it, the lung

issue is still not rearing its head..I have Scleroderma and RA...The issue is

ins...what type do you have? Medicare will not cover photopheresis...but private

ins will...It is not poison...but rather washing your blood, I did quite well on

it...2 days in a row every 2 weeks to start out...and then you SLOWLY spread out

your txs....I was up to every 10 weeks when I lost private ins...it does

work...proven tx...the photopheresis dept at Yale could give you more info and

give you copies of studies..they have used photopheresis extensively for PF and

SD and other lung conditions...if you are interested I could give you their

email and contact info...they are veryyy helpful....and since photopheresis was

developed there....veryyyy knowledgeable...Keep us posted. Debb

rheumatic Cellcept for pulmonary fibrosis

if anyone has tried above I would like to hear about your experience.

I've been on AP for ten years, with mctd, (sclero prevailing) and diagnosed

with pf 8 years ago but the pf is getting worse quickly.

thanks for your time

Sandy

Beaumont, CA

[Guest guest]

Sandy,

be careful what you take with Cellcept. I was also taking Enbrel and Prednison

and ended up with some severe eye problems. I e-mail Roche` since I didn't see

my problem listed on the printout you get from the pharmacy. Here is this info:

Your Response from Roche

Friday, July 27, 2007 10:08 AM

From:

" Medinfo, Nutley " <nutley.medinfo@...>View contact details

To:

holloway-eva@...

Thank you for the opportunity to respond to your inquiry. In our

clinical trials patients who were treated with CELLCEPT ®

(mycophenolate mofetil combined with cyclosporine and corticosteroids

reported the following side effects related to the eyes: abnormal

vision, amblyopia (also called lazy eye), cataract, conjunctivitis, eye

hemorrhage, lacrimation (tear production) disorder. Please report any

side effects you are experiencing to you physician.

Your email has been forwarded to the Roche Drug Safety Department. This

department is responsible for collecting data on side effects

experienced by patients while taking a Roche drug. They may contact you

for additional information.

http://www.rocheusa.com/products/cellcept

Sincerely,

Hobmeier RN, BSN

Professional Information Consultant

Roche

800-526-6367

RE: Vantive Case # 824645

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rheumatic Cellcept for pulmonary fibrosis

rheumatic

Date: Sunday, January 23, 2011, 10:21 AM

 

if anyone has tried above I would like to hear about your experience.

I've been on AP for ten years, with mctd, (sclero prevailing) and diagnosed with

pf 8 years ago but the pf is getting worse quickly.

thanks for your time

Sandy

Beaumont, CA