Autoimmune rash

Posted by killme1980 @killme1980, Nov 28, 2019

I have been getting a rash covering most of my body every time I get the slightest bit sick over the past 10 years. I have been told it was autoimmune and probably cause from when I got a almost deadly case of the bird flu. I don’t have any itching with it it just makes me look like I have the plague when it’s active. It effects everything except my face so that’s a plus but I’m beginning to wonder if it’s really that or maybe something else. The doctors never did any test when it’s active they just shrugged it off as autoimmune and that’s all.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Hello @killme1980, Welcome to Connect. I'm sure it must be frustrating to have a rash that comes and goes and not be able to find out what's causing the rash. You mentioned the doctors shrugged it off and didn't bother to do any testing while the rash was active. Have you throught about getting a second opinion?

Medical News Today has an article that may provide some helpful information -- Skin rash: 68 pictures, causes, and treatments
-- https://www.medicalnewstoday.com/articles/317999.php

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@killme1980 Hello. I really agree with @johnbishop about getting a second opinion. You said the rash doesn’t itch, thank heavens! Do you get a warning that it’s coming? Does it come often? You might try keeping a log each time you get a rash. Include how you felt, any fever, cold symptoms, how long it lasted, etc. You might also try unscented laundry and personal soaps. Many people develop allergies to all these commercial scents. When will you be able to see your doctor again?

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@killme1980 Yes last month l had a rash and itching l went to my internist and she didn't know what it was. l was concerned because l thought it was shingles. Since l had it when l first got married in 1978 but it was under my eyes. So my doctor wanted to send me to the dermatologist. And the rash was all around my neck, arms, back, legs. I had my own dermatologist so when l went to her by than it was healing so it could have been a medication or something going on in the hospital because l was a patient in the ER for a couple a day until a bed came open. But she recommended an over the counter lotion because with autoimmune disease you seem to be highly allergic to things. Good Luck and God bless

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@killme1980 I’ve been wondering about your rash. Has it changed at all? Have you seen any new doctors and what do they say? Just concerned

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@techi

@killme1980 Yes last month l had a rash and itching l went to my internist and she didn't know what it was. l was concerned because l thought it was shingles. Since l had it when l first got married in 1978 but it was under my eyes. So my doctor wanted to send me to the dermatologist. And the rash was all around my neck, arms, back, legs. I had my own dermatologist so when l went to her by than it was healing so it could have been a medication or something going on in the hospital because l was a patient in the ER for a couple a day until a bed came open. But she recommended an over the counter lotion because with autoimmune disease you seem to be highly allergic to things. Good Luck and God bless

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This is similiar to grovers disease. Have ou heard of it?

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@df3

This is similiar to grovers disease. Have ou heard of it?

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Hello @df3, welcome to Connect. Thank you for sharing your post. Do you have Grover's Disease?

@df3, @techi and @killme1980, there is another discussion on Grover's Disease if you have additional thoughts or questions.

> Groups > Skin Health > Grover's disease
-- https://connect.mayoclinic.org/discussion/grovers-disease-247ffc/

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@johnbishop

Hello @df3, welcome to Connect. Thank you for sharing your post. Do you have Grover's Disease?

@df3, @techi and @killme1980, there is another discussion on Grover's Disease if you have additional thoughts or questions.

> Groups > Skin Health > Grover's disease
-- https://connect.mayoclinic.org/discussion/grovers-disease-247ffc/

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Thanks for the info. My wife has been diagnosed with grovers dsease through biopsy. Thjere does not seem to be much relief.

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Killme1980- This rash looks nothing like the severe symptoms most of us with GD have. Go to dermnetnz.org and look up GD; lots of photos to give you the general idea. Yes GD can affect the neck area, but more commonly it is limited to torso areas. I have never heard of anyone with GD not having itching to some extent. For most it is severe for other's less so, but itching still exists.
The New Zealand Derm site is excellent, more extensive than the the NEA's. Doctor's have hundreds of skin diseases to consider and educating myself helped me diagnosis one of my forms of eczema. This NZ site covers all skin diseases, not simply eczema, and you can search for a disease with symptoms like yours and the photos are most helpful.
Eczema is an autoimmune disease. Once we get one autoimmune disease we often develop others; I know first hand.

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I woke up a few weeks ago with rash, looked like hives. Blotches under the skin. Went to Internist, he sent me to Dermatologist, then saw the rheumatologist. Finally, I saw my Hematologist. Thinking I had a reaction to my IVIG med. I was on Gamunex for years. Due to the backorder for the med, they changed me to Gammaguard. I receive infusions every 3 weeks. Since starting Gammaguard I had to add a steroid along with other pre-meds. Still have itching. The last infusion was Dec 26.

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I know this post was made several years ago, but I get the same rash, anytime I get sick, any virus, any vaccine. It goes away within 12 to 24 hours and it does NOT itch. It almost feels like a sunburn. I’ve always wondered about it. Recently, I was told that I tested positive for Lupus, and I’m wondering if the rash was related to it. But the Lupus rash itches, and it’s not the same. They still don’t know why I get such an extreme rash. Let me know if you learn anything. I’ve had this reaction all my life, and I’m assuming it’s some sort of undiagnosed autoimmune disorder. Still trying to figure it out

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