What meds are you on for your lung involvement? I developed lung problems 4 years ago, and was put on both Cytoxan and Prednisone for about 9 months. They would have kept me on longer except by then my liver enzymes were too high, now I have liver problems. The Cytoxan and Prednisone did help with my breathing problems.

I am on prednisone, plaquenil and I was on imuran. I just stopped the imuran to start cyclophosphimide. My lungs aren't getting worse but they are not getting any better either.

Damage to lung tissue is generally not reversible. But the whole point of these immunosuppressants is to try to prevent more damage. Hang in there!

I have both lung and heart involvement now.. Have to go repeat pulmonary function tests again in april and see lung dr. Those breathing tests where hard this month and not looking forward to repeating them. So far not on meds. ActuLLY TAPERING PREDNISONE AS HAD BAD REACTION TO THEM. No fun eh brunob!!!! Hoping I will be able to go on the cytoxin after testing. Hugs Marilyn

the cyclophosphimide (cytoxin) seems to be helping, My pft's weren't any better but I feel like I am breathing easier. I don't have any heart involvement I had an echo done a few months ago along with a barium swallow (that was fun) to make sure my eosophogas was okay.
My only side effect was some nausea if I took more than one pill. I had to split the dose over the day and so far I have been fine. I hope you have good results with it.
I really hate the pft's thay give me such a headache and then i have an hour long drive home....makes it such a fun drive! NOT
Hugs
Beth

I also have lung involvement. I took cyclophosphamide for 8 mos along with a tapering dose of prednisone. I became very weak with joint and muscle pain. My wbc count went below 3,000 and my docs decided to stop the cyclophosphamide since my lungs weren't getting any better....however, they didn't get worse either! I've been off the chemo for 3 weeks and just now am getting some strength back. I am discouraged about going through chemo-induced menopause at my age with limited benefits to my lungs. I am now on Cellcept which is promising to maintain the lung function I do have now.
Keep your hopes up...I am!

Yes we all have to keep up our hopes. My pulmonary tests took a real drop in one year but don't know the numbers just how short of breath I am. I had no heart problems a year ago either. scary. Hope they give me something to help when I see therm on the 12th. I aaam just starting 2.5 pred today so getting down there. First day of taper the worst. ugh. hugs marilyn

chemo induced menopause!!!! They didn't mention it as a possibility, and I mentioned the sweating and spotting. Once you stop taking it does the menopause stop? I had my regular doc check my hormone levels because I thought I was on the young side for it to be starting. I am kind of pissed about this, there isn't any mentioned on the websites as a side effect.

dear brunob,
My pulmonologist at Cleveland Clinic asked me over and over again if I was done having children since the cyclophosphamide would make me sterile. I had my estradiol (form of active estrogen in the body) checked about a month later and it was undetectable.
The hot flashes and sweating came on very suddenly but over the counter black cohosh did help (my pharmacist recommended Remifemin as the best studied brand of black cohosh).
Overall, I'm adjusting very well to menopause :) even if it didn't come at my own body's "timing".

I'm not worried about kids, been there done that...lol. It would have been nice if someone had mentioned it was a possibility so I would have been prepared for it. I don't have my blood work back yet (sometime this week) so I will know bwtter then. Thanks for the info.

Well I went and had my cat scan of lungs and seen respirologist. I have to go back for a heart catherization. Thats a bit scary. Seen Rhuemy afterwards. To get off prednisone and did not replace with anything else. Have heard any results from ct scan or blood work. Flaring pretty bad right now. hugs M

I had to have a right heart cath also after my pulmonologist saw my CT scan and PFTs. Relax, as much as you can, it wasn't too bad and only took about 15 minutes. Are they concerned about pulmonary hypertension? Hugs to you!

Yes they have diagnosed me with PAH. They are doing both sides of my heart. Thanks I hope I can relax a bit about it. hugs Marilyn

After my scleroderma specialist ordered an echocardiogram which showed a restrictive cardiomyopathy, I went to a cardiologist who ran a metabolic stress test on me. He found my heart-lung function to be reduced by about 36% from what it should be for my age and sex. Now the docs are trying to sort out whether the restrictive cardiomyopathy is due to the scleroderma, or to Fabry's Disease, or to amyloidois. I seem to have inherited some unknown familial thing which is known to exist in my family, and may turn out to be either Fabry's or amyloidoisis. But it could also be my hugely positive anticentromere B antibodies (associated with limited systemic scleroderma) doing it. So they are sending me to a Genetic center for testing to try to sort it all out. I eventually may need to have a catheterization with heart biopsy to finish clarifying it. Not looking forward to that! I agree with Maztaz that it's scary. The idea of their possibly poking a hole in the heart with the biopsy procedure is even scarier, and that risk does exist!