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Is anyone else diagnosed with this disease?
Hello @roxy1954, Welcome to Mayo Clinic Connect. @juanito started another discussion on Difficulty breathing and neuropathy. There was a link in the discussion to the Churg-Strauss Syndrome (eosinophilic granulomatosis with polyangiitis or EGPA) as having similar symptoms of breathing difficulties and neuropathy. @jaunito may be able to share what they learned helps them.
Mayo Clinic has some information on treatments and lifestyle and home remedies here:
Has your doctor or care team started you on or suggested any treatments after being diagnosed?
Thank you John. I do have a care team and have just finished 6 mo of Nucala which has helped a lot and kept me off of Prednisone. They are continuing on for another 6 mo. since it seems to be working on my breathing. They admit that they just don't know alot about Churg Straus and we are figuring it out together. There are many other things that pop up at different times with my body and so I thought I would check with others to see if I can learn anything on my own. I am due for more blood work and maybe CT or XRAYS to check progress there.
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Have you ever used Google Scholar (https://scholar.google.com/) to find medical research information? What's nice about it is the sort by year function for the search results to get the latest research information on treatments being used. I did a search for EGPA and it came up with a good sized list:
@roxy1954 Yes, Roxy, I have been diagnosed with CS. but no one has suggested any treatment. They all agree that my package of AI stuff is so all-encompassing that it is probably safer to just live as long as I can with these diseases and disorders. I am 80, so I don't have much longer, anyway. I and the docs just try to do the palliative treatments that come up, and not worry about the rest. I have a bucket full of lung, cardiac, nerve and other organ diseases, so I agree, palliative seems the best route. And by far the least expensive. Tylenol, methotrexate, Novolin, Levothyroxine, psoriatic cream, Noxema, Nitro, vitamins,BiPAP, etc, seem the best route for me..
Well, I am not a Dr. but it sounds like all the things you have falls under the CS category so not sure why they don't treat you for that and maybe it would take care of some of it. Are your EOS elevated? The treatment can be expensive but it looks like you are spending a lot on all the other medications. 80 is the new 70 so don't give up. How long have you been ill?
Thank you John. I will check it out.
Roxy1954, Yes, I do have CS, as part of my total package. I am not sure how one sorts one out when the whole package of dna includes so many that fit in one, such as CS. Anyway, OMIM says CS is included, so I just accept that and watch to be sure I am treating for that as much as for any of the others.
What kind of treatment plan are you on?
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.
Oldkarl, you truly have my deepest sympathies for all of your medical problems. I have never heard of one person having so many health issues. Perhaps your post will help some of the Connect members with their issues. You certainly have learned what to do and take for your problems. It was very thoughtful of you to post. Perhaps you will help someone. Peace, @joybringer1
@roxy1954 Hello. In additions to @johnbishop great ideas, you might also look into American Autoimmune Related Diseases Association, AARDA. They have lots of good information. I, too, have an unheard of autoimmune disease, Clippers. There are very few of us around. But we do have a Facebook page for sharing information. You might also check to see if there is a page for Churg-Strauss.
As I have found out, you have to become a researcher, a question-asker, and advocate! And try to establish a good, friendly relationship with your doctor. BTW, what kind of doctor are you seeing?
Becky, thanks for the note. I see a general PA, a cardiologist, pulmonologist, a urologist, an endocrinologist, a rheumatologist who only deals with arthritis, a geneticist, an ophthalmologist, a kidney man, a hematologist, an oncologist and a few more that I cannot remember their titles right now. And whoever is on at the ER. and the guy who does colonoscopies. And the dentist. And the anesthesiologist. And the dermatologist. And, oh, yes, a shaman and a witch doctor and a faith healer and the tooth fairy. And one more. "Sassy" for my frequent cat scan.😉
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