The results of my CT scan shows that Scleroderma is in my lungs, affecting 3 lobes, hence the 25% loss of lung function.
With little known about this disease, the only thing my Rheumy could suggest was Cytoxan, which is a Chemo drug. Yes, it will bring all the side effects with this and … AND … no guarantees this will work on slowing down the progress in my lungs. With a possibility that it will give me cancer in another organ.
Friday, I was a mess. Yesterday I decided that the odds were NOT good and I was not going to go on this drug. If it did not work, my body would be screwed up even more than it is and my immune system would be nil, therefore, I would not be able to be around the grandkids. So …. NO …. I am NOT going to do this drug.
The other alternative he gave me was to go to UCSF for a second opinion on treatment. I’ve done my research and the clinical trial at UCSF is the Cytoxan for one group of people; the other is CellCept (another drug that will mess you up). No thanks.
I know my docs with the hippocratic oath they have taken will not like my decision, but I am searching for a more natural treatment. I know I have to be careful with herbs and things that will support my immune system, because my immune system is already working overtime attacking my body, so there is quite a bit of caution I need to heed.
Worst case scenario – whatever natural remedy I decide to do, doesn’t work, I have had a better quality of life than putting toxins in my body being isolated in bed.
Yes, somewhere down the line I will be going on oxygen, but that time is not here and I’m not going to worry about that until the time comes.
I could tell my Rheumy did not like giving me this information. He’s even surprised how rapidly this disease is growing. But, I have faith in God and I ask Him everyday to guide me in my research process.