beanie

A Little Good News?

6 posts in this topic

Hi! I have been worrying and dreading starting on the Cytoxin when I go in to see my rheumatologist next week. I saw my pulmonary doctor this week and he repeated the part of the PFTs that were so "low" last month. The numbers were consistent with last months. But the nurse, bless her heart, was looking through my cart and looked to last years PFTs and the numbers were comparable to what I just had. Evidentally last month when I had my PFT and doctor compared it to the one right previously before, the previosly one 6 months ago must have been a fluke. Those numbers were just too high to be real. This months and last years 2 other ones were "normal" for me. Good thing nurse saw that, otherwise it had looked like a decrease of 25% in 6 months, which sent everyone into a panic, thus the talk of starting the Cytoxin. Still will talk to my rheumatologist next week and get her input when I go in to see what the results of my Holter monitor showed. My report says this: TLC is 54% - moderate restrictive lung disease, DLco is 44% - moderate reduction in diffusion capacity, FVC is 62% - moderate restrictive disease and no clear improvement with bronchodilator. How do these numbers compare with yours? Anyway, I was relieved. The numbers are not good, but normal for me and had not decreased like first thought. Will see what my rheumatologist says.

 

Thanks

Michelle

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Hi Michelle,
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.
Take Care,
Jen

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Jen,

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?

 

Thanks

Michelle

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Michelle,
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.

Big Hugs,


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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Michelle,

 

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

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Michelle,
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 there’s some truth in saying there's no proven treatment, but that’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 I’m getting around & with exercise. My rheumatologist went the route of 6 months IV cytoxan then 6 months Imuran. Imuran didn’t work I was given the option: cyclophosphamide, stem cell or cellcept…. I went for cyclophosphamide again while researching stem cell.

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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