A Little Good News?
Posted 08 December 2007 - 02:07 AM
Posted 08 December 2007 - 05:08 PM
I am glad to hear that the first numbers were possibly just a fluke.
Your numbers sound about like mine. My DLCO is slightly higher than yours but not much.
Have you and your dr discussed anything about what treatment you'll be on now, since it won't be cyclophosphamide?
Yay, I am sure that was a big relief for you.
Posted 09 December 2007 - 12:49 PM
Thanks for responding. Actually, my pulmonary doctor says there is no proven treatment to help the interstial lung disease associated with the scleroderma. What do you take? I am on Advair, but that is it. Have had several rounds of Prednisone. My rheumatologist is actually the one who wanted to start the Cytoxin and I see her this week. Since our numbers are around the same, how do you feel lung wise? Do you get short of breath easy or do you need nighttime suppliment oxigen?
Posted 09 December 2007 - 04:20 PM
Glad to see that things are not getting worse! With scleroderma, stability is a good thing! Looks you, Jen, and I have about the same numbers. I do get very short of breath with any level of exertion and my O2 sat drops into the 80s and 70s. So I'm on supplemental oxygen when I do chores or exercise and when I sleep. I was put on oral cyclophosphamide but couldn't handle it. I've been on cellcept since last spring and my last pft showed my DLCO and TLC increase by a few points. The first "increase" in 3 years so I was thrilled. Both my pulmonologist and rheumotologist said that inhalers and things like Advair were useless for ILD due to scleroderma and that there's nothing that will "cure it". However, a "few" studies have shown that cyclophosphamide and cellcept could help stabilize it. So please have a serious discussion with both your doctors. If your tests are stable and you don't show any symptoms like shortness of breath, then starting a new medication might not be worth it.
Please let us know how you are doing and how your appointments go.
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Posted 04 January 2008 - 01:30 PM
Im currently on IV cytoxian treatments, they are very difficult. around the 3 rd day I feel as thought I have the flu, today is my second day and I ache all over, did you take oral or IV?
Kelly A in NJ
Posted 04 January 2008 - 11:49 PM
Hum... I guess I say hum... cause I'm not so sure about your doctor saying there is no proven treatment to help the interstitial lung disease associated with the scleroderma. I guess thereâ€™s some truth in saying there's no proven treatment, but thatâ€™s a technicality. The problem is very few people have scleroderma and fewer participate in studies so getting good numbers to show a treatment is viable and proven is very difficult.
That being said... I have a low TLC & DLCO. I use oxygen all the time but only really need it when Iâ€™m getting around & with exercise. My rheumatologist went the route of 6 months IV cytoxan then 6 months Imuran. Imuran didnâ€™t work I was given the option: cyclophosphamide, stem cell or cellceptâ€¦. I went for cyclophosphamide again while researching stem cell.
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...