Posted 11/27/2013 2:28 AM (GMT -6)
Birt, Welcome To Healing Well! I am not familar with Eosinophillic Fasciitis, so I used google. From the sounds of it, but do please correct me if I am wrong, it is an autoimmune disease that causes inflammation. Treatment happens to be chemotherapic agent medications (autoimmune suppressants) from what I see too. I don't have this particular problem, however, I have necrotizing gramultous inflammation pseudotumor and Wegener's Disease.
When I first got sick, I was treated agressive. I was on long-term high dosages of prednisone, given radiation and put on chemotherapy agent medications. I surely understand your frustration and why it gets depressing. I had and still do have so many mixed emotions about it. The prednisone was extremely hard on my body, as it is a medication that should not be used long term actually. I went from 238 lbs to 340 lbs, developed purple strea (sp), hot flashes, moon face, muscle cramps, muscle spasms, glucose readings (bloodsugars, as I am diabetic) went haywire including having to be put on insulin, extreme fatigue. The bright side is when I got off prednisone all those side effects went away, and I went from the 340 lbs to 210 lbs.
From reading on medicine cabinet, it looks like the treatment is extremely similar to mine. Right now I am being treated with Methotrexate Injections, Folic Acid, Flexiril, Gabapentin, Morphine, Percocet. I feel like I could open a pharmacy with all the crap I have to take!
Has the DR suggested radiation to help shrink the inflammation? You can get only so much radiation in your body, so they use a term called "life-time". My location is behind my left eye. They gave me life time radiation of left eye. It just means I can't radiate more on my eye. I do not know if it will help you, but it helped me a lot. Do you go to a specialist? I am very interested in hearing about this disease you have. If you don't have a specialist, I always suggest teaching hospitals. For example, I go to OHSU, Oregon Health and Sciences University. I have found teaching hospitals have more specialists, newer medical equipment, newer testing, state of art medical training, the current medical training, and if you can't pay for it the hospital usually writes it off if you can't even do a payment arrangement. I signed a waiver for my doctor stating he can bring in interns, other doctors, visiting doctors, out of country doctors and so on. I decided because I am 1 of 500,000 people to get this problem if I could at least help one patient to not be the guinea pig I am, it is worth it. The drs will know how to treat it then.
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