Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.



  • Please log in to reply
3 replies to this topic

#1 Lynda


    Bronze Member

  • Members
  • PipPip
  • 17 posts
  • Location:Ontario, Canada

Posted 18 July 2007 - 12:26 AM

I am not taking any drugs yet, too scared of them especially Prednisone. I am considering alternative meds like holistic. Would like some feed back.

I have Difuse Systemic Scleroderma, Pulmonary Fibrosis 48% capacity.


#2 jefa


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,284 posts
  • Location:Scotland

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.

Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 peanut


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 737 posts

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...

#4 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,895 posts

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.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)