Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


SCOT Study

  • Please log in to reply
11 replies to this topic

#1 Bird Lady

Bird Lady

    Silver Member

  • Members
  • PipPipPipPip
  • 118 posts
  • Location:Southport NC

Posted 04 April 2008 - 06:20 AM

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!!!
Hugs for All,

Julie (Bird Lady)

#2 Karenlee


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 380 posts
  • Location:Long Island, New York USA

Posted 04 April 2008 - 06:32 AM


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.

#3 Peggy


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 633 posts
  • Location:Minnesota

Posted 04 April 2008 - 06:47 AM

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.


#4 GocartMoz


    Silver Member

  • Members
  • PipPipPipPip
  • 164 posts
  • Location:Florida

Posted 04 April 2008 - 08:47 AM


I am so glad to hear your husband is doing better. I wish you continued success.


#5 LisaBulman


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,133 posts
  • Location:Massachusetts

Posted 04 April 2008 - 08:48 AM

Sorry I can't help with what comes next but I did want to wish him continued improvement!!

Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#6 jefa


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,284 posts
  • Location:Scotland

Posted 04 April 2008 - 10:07 AM

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,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#7 kellyA


    Senior Bronze Member

  • Members
  • PipPipPip
  • 73 posts

Posted 04 April 2008 - 02:58 PM

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..


#8 janey


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,113 posts
  • Location:New Mexico

Posted 04 April 2008 - 03:30 PM

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)

#9 peanut


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 737 posts

Posted 04 April 2008 - 04:05 PM

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,

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#10 epasen


    Silver Member

  • Members
  • PipPipPipPip
  • 233 posts

Posted 04 April 2008 - 10:28 PM

Hei BMW and Bird Man, glad to hear that you are seing some kind of improvement :) I hope that you'll see more in the future! Emmi

#11 Snowbird


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,007 posts
  • Location:Canada

Posted 05 April 2008 - 04:04 AM

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

#12 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,624 posts
  • Location:(United States)

Posted 05 April 2008 - 04:39 PM

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 w/ 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)