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autoimmune diagnosing problem

Posted by @emtlisap in Autoimmune Diseases, 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!

Tags: Skin Conditions, Other, Autoimmune diseases, Lupus

Deleeuw25 and PeterE like this

Posted by @jlacek, Aug 1, 2011

Was your daughters rash vasculitis? That was my first showing of Lupus. Sounds very similar to what I went through. I had a fever, vasculitis, and extreme full body pain.They originally thought it was HSP, but turned out to be Lupus.


Posted by @emtlisap, Aug 1, 2011

I looked at a website with pictures of vasculitis, and some look like what the doctor said was HSP. This last rash had larger, raised rashes that were red circles with yellowish centers. Different from the other rash. Doctors now thinking it was a reaction to the Plaquenil they put her on. She discontinued Plaquenil and it is slowly, very slowly going away. They said Plaquenil has a long half-life. Thank you so much for replying to my post!


Posted by @sebley12, Aug 10, 2011

I too experienced a rash of red raised nodules on my legs and I also have Psoriasis and I could not walk as I too was in extreme pain. I was diagnosed with Sarcoidosis, Eyrethema Nodosum and 35 yrs after the birth of my son, I was diagnosed with Multiple Sclerosis. I am now an advocate for the AARDA.ORG association where you can go too to find over 150 Autoimmune diseases. I only wish health providers were more educated on these diseases but I guess we need to be our own advocates. Best wishes to you and your daughter. Please visit that site. Just google it. Take care.

samflan likes this

Posted by @fitnspark, Sep 6, 2011

I too had a rash and high fever leading into lack of white blood cells and platelets. It was caused by an alergic reaction to a Sulfer based drug. After discontinuing the drug it took 6 weeks for my blood work to reach the lowest levels of normal. Keep faith that your daughter will have a full recovery also. Once I was better I continued to have many other health issues and 5 years later I found out I have PID. I have been on IV Gammaglobulin ever since and am doing better, I was also diagnosised with hypothyroid when I was 16 yrs old. My symptoms also matched lupus but I'm greatful to have found a diagnosis that can be treated. Unfortuately I still have uncontrolled asthma, arteritis, GI tract issues etc. But things are better. Good luck and let us know how shes doing.

hayleesmom2005 likes this

Posted by @countrywmonan, Sep 6, 2011

hi, i have addison diease, when then found out, they try all different medication on me, and I recated to them strongely,rash hurt all overI dont know if same thing or not,but it almost kill me. I was recated to latex as well. Sorry for what you are going threw as mother. I glad that my children dont have this diease because it bad and does kill. please keep up your spirts and NEVER give up. thank you countrywoman


Posted by @countrywmonan, Oct 18, 2011

someone ask me, if i went to sm. hospital or lg. hospital, answered this way ,yes been to both. Small town , dont go there, i had bad exsperince there all most lost my life 2x . I go to Uw hospital but they dont have evrything either, i notice. lots doctors dont know how treat addison, plain and simple.. I been in hospital alot and ER just much so, yes there some doctors know how treat it,go to national addison to find go doctors, so they help.. It good to talk to others about addison, it dont easy thing to deal with. I have great husband, that know more then doctors and this point. We do keep all records at home of everything including test results so they can be compared..I did go to mayo clinic just few mth ago do see if they could help more, ,it would be nice dont go ER or hospital so much. thanks listen countrywomen


Posted by @cwmcdaniel, Oct 27, 2011

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.


Posted by @mccshar, Jun 5, 2012

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


Posted by @texasjanie, Oct 29, 2011

I had symptoms of lupus in my early 20's. Over the years I was hospitalized with many unidentified skin rashes and had 5 different positive test for lupus and was told to ignore them they were false positive. Finally (when I was nearly dead lol and probably because I am a nurse) some dr finally listened and dx properly systemic lupus. But it has so many different ways to present it is really hard to get people to listen and not label you as a hypocondriac. Don't give up!!!


Posted by @april60, Jan 12, 2012

hello, I have tested positive and negative respectively for RA arthritis and lupus. Now Dr. Says fibromyalgia. I'm confused as to what to think. Does this sound like what you went though?


Posted by @sherry8034, Mar 6, 2012

Once positive is ample evidence of the disease. Keep bugging the doctors to take you seriously. What happens sometimes is that you have more than one autoimmune disease (and many go hand in hand) and the blood tests can come up differently at any given time.


Posted by @sherry8034, Mar 6, 2012

P.S. Fibromyalgia does NOT give a positvie ANA or RA factor or positive Lupus test. It can make the sed rate and CRP high but that goes with any autoimmune disease and is non specific.


Posted by @petere, Jan 12, 2012

There has been a lot of research tying autoimmune disorders and chronic pain to severe vitamin D deficiency.

Granted, I'm not a doctor, and I cannot and will not issue medical advice. That said, you may want to check out this article on vitamin D deficiency and some of the diseases, illnesses and conditions to which it has supposedly been linked.

I'm usually pretty tentative about referring other people to internet destinations as sources of credible information, but this article is very well sourced, with each disease/condition listed in the article linked to the abstracts of numerous studies posted at sites such as that of the National Institute of Health, the Mayo Clinic, the Endocrine Society, the Vitamin D Council and other highly credible sources.

The article can be found here:

Anyway, have a look if you care to, and arrive at your own conclusion. I don't purport myself to be an expert on any of this stuff, however I found this particular site and article to be unusually well-sourced relative to most of the other health/medicine-related stuff floating around on the web.

PamEganNP and PeterE like this

Posted by @sherry8034, Mar 6, 2012

It is not always easy to diagnose Lupus. Some doctors rely too heavily on blood tests and ignore the obvious symptoms. In the end (after years of symptoms) my new doctor said there was "ample evidence" for Lupus (SLE) and started treating me. Some doctors call it "Lupus like disease". Persevere. I wish you had the opportunity to visit the Mayo Clinic. However, there ought to be someone in your area who can handle this. Just do not give up.


Posted by @css, Mar 13, 2012

Pat A .I had a lot of symptoms off and on for probably 10 years. I was tested for lupus and told I didn't have it. Had a rash just on my legs (vasculitis). Was in a lot of pain, especially in the arms. Ended up in the hospital and they thought I had leukemia. Finally was diagnosed with Churg-Strauss Syndrome which is an autoimmune disease. Have many health problems but at least I know what I have and am on the proper meds. Maybe check for that, she would have to meet 5 of 6 criteria as there is no definitive test. Good luck, don't give up!


Posted by @mllucas, Mar 24, 2012

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.


Posted by @captnick, Jul 26, 2015

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.


Posted by @deleeuw25, Nov 23, 2012

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.


Posted by @emtlisap, Nov 24, 2012

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

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