autoimmune diagnosing problem

Posted by emtlisap @emtlisap, Jul 12, 2011

My 25 year old daughter has been in and out of the hospital for the past several months. Tons of tests trying to rule out lupus, with most of her symptoms matching some type of lupus or subcutaneous lupus. Her last hospitalization was for a severe full-body rash treated with very high doses of prednisone and some other extremely strong medications. The doctors in Taiwan say it is the worst case they have ever seen and are puzzled how to treat it. Last hospitalization she had a fever of 104 for 2 weeks, along with a rash. The pain all over is excruciating. Does anyone else have similar experiences? She had an episode as a teenager with Henoch Schonlein purpura, and also began taking Synthroid as a young adult for her thyroid. I am searching for any answers regarding diagnosis and treatments. Thanks!

Liked by PeterE, Deleeuw25

@cwmcdaniel

I know this has been some time ago and hope that your questions have been answered. My Mother was diagnosed with bullous pemphigoid in August. This was after many doses of antiobiotics for a bug bite and/or staph infection. Finally in August she broke out with blisters from her neck to her knees. It has been awful. She is in a lot of pain still. She has been on steriods since August and off and on antibiotics for other infections. It is believed this was caused by the antibiotics. It is closely realted to Stephens Johnsons disease. We have used neosporin today and it seems to have eased the pain. She has been going through this for 6 months. It will almost clear up and then the breakout is twice as bad. Good luck on finding something that will help.

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I am so worried for her. stevens johnsons disease is a horrid problem. Did any dr. contemplate sulfazazline for her?

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I have HSP and I still struggle with it. We found that medical socks help make the swelling and rashes go away on my legs. I’ve used them for two years and up until now they have kept things calm. They might be worth trying for you. I hate prednisone with a passion. High amounts for months.. Not fun. Dapsone is another med that seems to help with my HSP. You should ask your doctor about these things to see if they can help you as we’ll.

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@deleeuw25

I have HSP and I still struggle with it. We found that medical socks help make the swelling and rashes go away on my legs. I’ve used them for two years and up until now they have kept things calm. They might be worth trying for you. I hate prednisone with a passion. High amounts for months.. Not fun. Dapsone is another med that seems to help with my HSP. You should ask your doctor about these things to see if they can help you as we’ll.

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Thank you for your response! I will pass the info onto my daughter!!!

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@mllucas

I don’t want to discourage anyone not already diagnosed, but I’ve been working on one for nearly 40 years now. Earliest dx was MS; now working on CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). The Demyelinating part indicates a similarity to MS in that it attacks the myelin sheath and the neuropathy part is like with diabetes, but the poly part means many neuropathies. It is an autoimmune disease and my Neurologist says I have it “and something else really big” – like a connective tissue disease (lupus, scleroderma or maybe a mixed syndrome). The scary part is now it is affecting my autonomic nervous system – breathing, blood pressure, heart rate. I responded well to IV IgG or invenous immunoglobulin, but we had to change insurance companies and the new one would not pay for the treatments. My Rheumatologist is trying to help my Internist find a “bulldog” Neurologist that won’t let the insurance company push him around and fight to get the treatments I need. Who out there also has CIDP. I hear it’s pretty rare.

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After many tests including emgs, mri, blood, & spinal tap, I was dx with CIDP, put on 60mg predisone per day which did not help. Then had 9 IV IG treatments. They did not help. Went to CIDP Int. Foundation seminar & after speaking to several Dr there who reco that I get another dx. Went to Shanz Med. Ct in Gainsville, Fl., Dr. after nerve cond. test said that I did not have CIDP, but had CMT & that there was no treatment. Back to local neurologist who said I did not have CMT. thought polyneuropathy & only gave me pain killers. I will be going to Mayo next week, hopefully for some help. I have chronic pain & loss of strength in my legs & hands. Walk with cane, but concerned how much longer I will be able to walk.

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