kellyA

Unsure of Cellcept.

5 posts in this topic

I was reading the eairler post about cellcept.

 

Can someone please tell me, Im so confused. Last time I went to see the pulmonary dr, she told me she would like to start me on cellcept as a maintenance to cytoxian (which I finised 9 treatments).

 

I told her I would do some research and get back to her, Is cellcept for your lungs or the skin? I heard really bad things about it and Im leaning towards telling her no thanks..

 

Please advise?

 

KellyA

Share this post


Link to post
Share on other sites

Hi Kelly, i just started taking Cellcept 3 weeks ago. I too was uncertain about taking it (I had read the FDA warning) so discussed it with my rheumatologist. He said that he would be happy to take Cellcept, so I decided to go for it. In my case I am taking it to try and stop skin progression. Its too early to say if it is having any effect - I was told it would be three months before saw any results. To date I have had very little in the way of side effects.

 

Lizzie

Share this post


Link to post
Share on other sites

Hello Kelly

 

I have been on Cellcept since Oct 07, I was given it as it is considered to be the most well tolerated of the immunosupressants.

 

To date I can't hang any particular side effect on it and according to my sclero nurse I would have had them by now if they were coming.

 

It has most certainly improved my skin tightening, it's still not like normal but any improvement means you feel better. As a result my mobility is better, although I still need walking aids/wheelchair but I don't look like Frankenstein's Bride when I walk anymore.

 

I have just had a flare up in which joints became more stiff and skin tightened again, how much worse would it have been without the Cellcept.

 

As far as I am aware I have no internal involvement apart from bowel issues so I assume the Cellcept is protecting my lungs etc as well.

 

I had wanted to stop all meds, due to migraines, but did not because of how much worse I would be without the meds.

 

It is a personal choice but remember that of the people that died from a brain infection whilst on Cellcept, none had sclero, they were transplant patients or lupus patients so would also have been on many other meds, their diseases had different courses and they had different factors in effect to what we have.

 

Many people thrive on Cellcept, I believe I am one of them.

 

I hope you make the right decision for you.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Kelly ~

 

Cellcept is an immunosuppressant which works to sort of balance out our over-active immune systems and put any progression of scleroderma in check. It is effective for both skin and lungs.

 

I have been on 2000mgs Cellcept since Feb. 06. I have tolerated it very well and it has worked to stabilize my lungs and soften my skin. I am also convinced that without it, I would be much less mobile. My rheumatologist agrees and wants me to stay the course.

 

Good luck to you,


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Kelly,
I've been on cellceptsince April, 07 with no side effects other than a stable to mildly improved lung function. If you've been on cyclophosphamide, you'll find cellcept a piece of cake. As Barefut mentions, it has been shown to improve both lung function and skin fibrosis. I don't have skin involvement so I can only personally speak for the lungs.

Good luck with whatever you decide.

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now