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Anyone else with Churg-Strauss or EPGA?

Autoimmune Diseases | Last Active: May 4 2:41pm | Replies (29)

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Roxy1954.. My treatment plan is simple. My meds and other forms of treatment focus primarily on overall systemic issues such as cardiovascular, Gelsolin, diabetes, pulmonary, encephalopathy, leukemias, pain. EOS is part of a few of these, including Gelsolin. So I take things like Methotrexate, Nitroglycerine, Imdur, levothyroxine, Tylenol, Novolin, aspirin, furosemide, Prazosin, Omeprazole. I also have the genes for both obstructive and central sleep apnea, so I use a BiPAP.. I have hereditary cryosensitive purpura, so I keep my face covered with Gold Bond psoriatic cream with aspirin, or Noxema, or Clobetasol. For excess mucus flow from EOS I use Walmart Mucus Relief tabs. Very cheap, and terrific. I also have an Abbott Glucose Monitor to track my response to diabetes. Right now, my big worry is my legs and belly. The muscular dystrophy is eating away at my muscles, turning them to fat. I walk as much as I can, but this only makes the muscles weaker. My kidneys are failing, I am on the edge of stage 4. My Cardio system is failing, Pulmonary, spleen, liver, adrenals, all failing. I have disappearing white matter encephalopathy in my cerebrum. My wrists and ankles are rapidly becoming just floppy. My eyes have ptosis and purpura, on the eyelids, which hurts terribly at times, so I use the Gold Bond stuff to ease the pain. Well, that is most of the treatment. Oh, yes, my fingers on both hands have Zinc Finger trigger finger, like arthritis.my skin is now involved in macular skin over most of my body. I go from constipation to diarrhea every 3-4 days, then back again. My shoulders, upper back and upper arms are covered with welts from the Fukutin LGMD (FKRP). My teeth and finger/toe nails are breaking up from the Gelsolin. Every valve in my body, from my nasal passages to my esophageal valves to larynx to Barrett's to gall bladder to urinary tract and cardiovascular system are becoming stiff, leatherized and unable to work properly. And I am a survivor of both systemic and localized cancers everywhere. Anyway, occasionally one of my treatments is a dud or a danger, and I have to change something, or have something cut out. If you look at OMIM under Gelsolin and Fukutin and Cardiomyopathy, you will see just how many issues we have to deal with, just to stay alive.

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Replies to "Roxy1954.. My treatment plan is simple. My meds and other forms of treatment focus primarily on..."

Well, that does not sound like a simple treatment plan at all. It sounds like you have covered most areas of your body but treatment isn't progressing as hoped. That has to be physically and mentally draining and I am very sorry you are still having all those issues. You will be in my thoughts and prayers and hope that you will find more relief soon. I was reading your response to Becky and it sounds like you have kept your sense of humor. I may want the phone # for your witch doctor.

My goodness, oldkarl. i'm praying for your comfort and amazed at your knowledge, stamina and strength! Blessings to you! Elizabeth