Bird Lady

SCOT Study

12 posts in this topic

Birdman just finished his 12th cytoxan infusion, His breathing and skin is better but we don't know what to expect now. Has anyone else been through this? and what treatments did you recieve after the cytoxan?

Thanks in advance!!!

BMW


Hugs for All,

 

Julie (Bird Lady)

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Hi BMW,

 

No, I have no personal experience with it but that's great that he's seeing improvement. Keep us posted on his progress and good luck.

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I had cytoxan for only 5 months and then it started attacking my bladder so I had to quit it. I noticed a softening of my skin after about a month but now it's been 4 months of not being on it and any improvement I had has long disappeared. Maybe it was because I wasn't lucky enough to be on it longer. I hope you have great results. I only wish I had maybe drank more water when I was on it and then it wouldn't have went after my bladder.

 

Good luck.

 

Peggy

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I'm sure you and Birdman are both glad to have the infusions behind you. I do hope that there is enough improvement to have made it all worthwhile. Hugs to both of you.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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I finish my 9th treatment next month, I also am wondering what t0o expect, I just started back at the gym and Im able to do 45 min of the treadmill, beofre the treatments I could not even do 5 min..I do feel better..

 

KellyA+

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HEY BMW,

So great to hear that the birdman is showing improvement! I wish I could answer your question, but I've had no luck finding the answer to "what's next?" I can say that when I was on oral cytoxan the plan was to keep me on it for a then switch to cellcept. Unfortunately I didn't make it through the first month of oral cytoxan without having to stop it. What comes after IV cytoxan, I have no idea. What are his doctors telling him?

 

I hope the improvements continue.

 

Big hugs to you both,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hey Kelly A, Birdman, & Julie:

I finished my 13th cytoxan treatment mid March. It's my understanding that eventually when your rheumatologist feels you're "stable" you're put on a less toxic immunosupressant to maintain you stablity, like Imuran or Cellcept. My rheumatologist tried this with me after my 6th treatment. Unfortunately it didn't work for me but it has worked for many others.

 

This is just my experience.

Take care,

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Me too, best wishes Bird Man with continued success! That's good news!


Sending good wishes your way!

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BMW and Birdman,

 

I'm glad to read that there has been improvement with regard to the cytoxan infusions.

I've not had any experience with them, but I'm so glad they're helpful.

 

Please stay in touch and let us know how you both are doing.

 

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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