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I just finished my 8th cytoxan treatment, 1 more to go, althought I noticed im out of breath alot more lately (my dr did a scan and said the intersittal lung disease stayed the same as when I started) I was rather depressed to hear that, she said she was hoping to keep it at bay, I thought the treatments would get rid of it. This last treatment really took me down, I called out of work 2 days this week, sick all day and very tired....


Can someone e-mail me that has gone through this, is this normal to be more out of breath?


Why should I have 1 more, I feel horrible on the third day, anyone else miss work cause of this



Kelly A

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Hey Kelly,

I don't know about being short of breath. I do know that with every treatment the next becomes harder on your body. Maybe you're coming down with something or spring asthma?


ILD is a mix of inflammation and scar tissue in your lungs. X-rays and CT scans cannot differentiate between the two so its impossible to tell how much of each you have in your lungs. Inflammation can go away where scar tissue is permanent damage. The hope is that it is mostly inflammation and that with treatment the inflammation will dissipate.


When I was working I called in the next day after my cytoxan whether I needed it or not just so I could stay in good health. But each of our bodies are different and we all process this awful chemical differently. Maybe yours needs rest.


Take care,


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Thanks for your advice, my dr. told me I have no scar tissue at all, just inflammation. She said it was minimal and wanted to be aggressive with the treatments to see if it will go away...

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Hi Kelly,

I went through 5 cytoxan treatments. I had to stop short because my liver couldn't handle it. I was under the impression that the cytoxan would not improve my lungs but hold it steady. It did, for about a year and a half then my symptoms really came back and I was in the hospital for a few days because I could barely take a breath. Hopefully the cytoxan will help your lungs from getting worse.




Lisa Bulman

(Retired) ISN/SCTC List Coordinator

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International Scleroderma Network (ISN)

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I had six cytoxan treatments. I made sure to get 2 days rest the day after the treatment. I also drank plenty of water for the first 2 weeks -- 8 or 10 huge glasses a day. And during days 14 through 17, I made sure that I got plenty of rest -- didn't push myself too much. I didn't have many problems following this scenario. Best of luck. Gidget

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