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susieq40

Update on me

11 posts in this topic

Hey all. I went through all the breathing tests again on Tuesday. Also a catscan of the lungs. I was diagnosed with Sine Scleroderma with interstitial lung disease and pulmonary hypertension in June 2008. I started cyclophosphamide (chemo) in September 2008. And good news, I am close to the same as I was in June. So the cyclophosphamide is working at keeping me the same, no changes. :happy: I will continue on cyclophosphamide for a while, then probably move to cellcept. Anyone on cellcept? How does it make you feel, etc? Just a wondering. I am so glad I am not worse. This has been such a change in my life, and in my family's life. Just keep plugging along doing the best we can.. Thanks everyone so much for being here, and sharing you experiences and being here for support! :thank-you:

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Hi Susie, I've been on Cellcept for 7 years. with no side effects at all and in fact I can not come off it. I am in remission and have tried to stop taking it twice but the systemic sclerosis comes back in about a month. It is a great drug but not everyone can take it, some people have trouble with their liver. It takes 6 weeks for it to get fully in your system and to get the full effect. I wish you well and hope it works for you as well.

 

alice1

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Hello Susie

 

Fantastic news! Make sure you and yours do something to celebrate the good news.

 

I was on Cellcept for 10 months and up to that point had no side effects, unfortunately the headaches it gave me were unbearable so I'm now on methotrexate. It is usually well tolerated so I am sure you'll get on great with it.

 

Take care.


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)

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Susieq40, I am happy to hear you are no worse for the wear. Very happy to hear that your lungs haven't been progressing even at a very slow pace. If things are at a stand still then the medications have been doing the job like they were suppose to do. Thanks for the report.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Susieq40

 

I'm glad to hear you are holding your own and not getting worse too...such good news! :happy-day:


Sending good wishes your way!

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Hi Susieq40, glad that things seem to be going well. I was on Cellcept for about 6 months. I felt absolutely fine while taking it (unlike the Methotrexate I am now on!) and it had a good effect on my skin. I was very disappointed to have to discontinue it due to very rare side effect of oesophageal haematoma. I hope it works well for you.

 

Lizzie

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Hi SusieQ!

I've been on CellCept for 3 years now. We had to reduce my dosage a bit in order to keep my white blood cell count within acceptable (still low, though) limits, but that has been the only side effect. I'd sure hate to give it up, I think it's keeping things reasonably stable, on the whole. I hope if you transition to it from cyclophosphamide you'll have as good results as you've been having and no side effects. It's great that you are doing well.

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Susie

So glad to read that you've had a good result from the cyclophosphamidehappy-day.gif

I also had a very good response from the drug; I've never taken Cellcept but really hope that you see equally good results when you start taking it. smile.gif


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I have been on cellcept for 4.5 years with no side effects. When they switched me to generic the sclero came back with a vengeance so I am back on the name brand and back in remission. It took 5 months to get things under control.


Rosa

Diffuse Sclero

dx Jan 2006

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