Posted 18 July 2007 - 12:26 AM
I have Difuse Systemic Scleroderma, Pulmonary Fibrosis 48% capacity.
Posted 18 July 2007 - 01:03 AM
Hi, Lynda. I share your reservations about the strong drugs often used as treatments, though you should exercise caution with alternative therapies as well. Here is our page on Scleroderma and Alternative Therapies for your research. Even without drug therapy, there are many treatments and behavioural practices which will help you fight the disease. I also include links on Scleroderma Clinical Trials and Pulmonary Fibrosis.
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host
International Scleroderma Network (ISN)
Posted 18 July 2007 - 04:39 AM
I guess it would depend on how fast you're progressing. I'd be nervous because you only have one set of lungs. Holistic medicines have yet to be researched and may produce questionable results, or none at all. It may take a few months to get an accurate reading on if the holistic treatment is working... and if it doesn't work you've lost precious lung capacity.
For me, losing lung capacity scares me more than the scary effects of the meds I take to control my lung progression. But we each have to come to our own decision.
I hope that which every you choose brings you health,
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 18 July 2007 - 05:29 AM
I can understand your concern about medications, I feel the same as you. I'm very alternative medication oriented, but really feel plaquenil is a good one for scleo/lupus patients.
Maybe you can discuss that with your doctor.