Hi all,
I was diagnosed with Sjogren's a few years ago - doctors, for various reasons, think it's probably secondary to something else instead of primary Sjogren's. A couple of years ago my celiac testing (blood and biopsy) came back negative but "iffy." Been off of gluten since then and all symptoms except dryness have improved dramatically.
But I've been back to my old symptoms the past week - migraines every day, fatigue, dizziness. Plus something new - a crazy itchy, getting-worse-every-day, bumpy rash.
Now, I know that celiac disease is associated with an itchy rash called dermatitis herpeteformis, but I don't actually meet the diagnostic requirements for celiac disease.
But I recently read that this rash (DH) is also associated with Sjogren's. Does anyone have the skinny on this? Or had DH with a Sjogren's diagnosis? I have high co-pays and am trying to decide if there's any benefit to wasting one on this rash.
(If it is DH, it would be great to have it diagnosed so that I have more than a "weird" celiac testing results to back up my diet choices.)
I am sort of in the same boat, a few years ago all my testing came out as sjogrens, but my primary symptoms were petechiae/purpura rashes mostly on the lower legs/ankles with swelling at times which may or may not be related to sjogrens. Most of the major purpura rashes went away over time but I still get petechiae patches off and on. I find often it is seasonal too and this summer's humidity has kicked my butt! Also the skin biopsy would not even confirm a real vasculitis!
I know with celiac disease that particular rash, DH is very very common. If you are gluten free is it possible you have had gluten snuck into your diet recently or been cross contaminated?
I tried going gluten free once myself but it did nothing for my symptoms of rashes/aches etc. But for many I know gluten is a near poison for them to put into their bodies.
There are also other dietary things to look into; soy, corn, sugar etc. So much out there with diet it can make your head spin!
Best of luck. Rashes stink. :-[
I had several breakouts of rash, hives and welts all over that were ultimately diagnosed by allergist as autoimmune uticaria. The acute phase was treated with a medrol dose pack and hycosamine. Now I take two allegra a day when I feel the itch come on as recommended by the doctor. I used to use benadryl, but it makes my Isaac's and restless legs syndrome worse.
Hope it helps.
I have been developing a flat rash that is slightly itchy on my lower legs, ankles, knees and sometimes on the palms of my hands.
I have been diagnosed with primary Sjogren's since 2012 and also have severe allergies and asthma. I have been told by my rheumatologist to seek a skin biopsy by a dermatologist to rule out lupus of the skin.
I just finished a prednisone taper, which totally kept the rash at bay and I am beginning to think autoimmune.
I have taken pictures of the rash and plan on showing my dermatologist to see if she agrees that it should be biopsied.
I don't know if they will do anything different with my treatment regiment if it is in fact lupus/we'll see!
Just a thought that you may want to have a dermatologist look at it, as I have been instructed to do. Take care & good luck.
Tiff 123 - I get petechiae too! I had never heard of it until a couple of years after my diagnosis when I got them for the first time. I get it on my arms. I saw it described as a "cosmetic nuisance" and thought that was very accurate. Swelling sounds like more than a nuisance...
I did eat "unsafely" at a restaurant with a risk of cross-contamination on Sunday, and my symptoms have been worse since then. :-\
But I also am due for a postpartum symptom flare-up. I seem to have those about 8 months after giving birth. :(
Tharrell - Thanks for this! It looks like autoimmune uticaria is chronic hives? What I have actually looks a lot like hives. I didn't think of that because I've never had hives before, and I'm not allergic to anything. When I first got the rash, I thought it couldn't be hives because I hadn't been exposed to anything new - no new food, soaps, detergents, or clothes. But if they could have an autoimmune cause that puts them back on the table, I guess. If they become chronic I'll definitely get it evaluated since it looks like they can be associated with autoimmune thyroid disease.
LadyDi - I hope the dermatologist is helpful. I'm glad you've taken pictures of it - My husband just did that for me. It seems like there are so many things that "just happen" with autoimmune disease. (Last year for me it was tongue swelling!) Hopefully it's just "one of those weird AI things" and not lupus. :-\
Consider:
Mast Cell Disease 101
http://www.sneeze.com/allergy-resources/mast-cell-disease-101/
When to Suspect MCAD.
http://ohtwist.com/what-is-mcad/when-to-suspect-mcad/
Quote from: Kris29 on August 18, 2018, 07:13:41 PM
Tiff 123 - I get petechiae too! I had never heard of it until a couple of years after my diagnosis when I got them for the first time. I get it on my arms. I saw it described as a "cosmetic nuisance" and thought that was very accurate. Swelling sounds like more than a nuisance...
I did eat "unsafely" at a restaurant with a risk of cross-contamination on Sunday, and my symptoms have been worse since then. :-\
But I also am due for a postpartum symptom flare-up. I seem to have those about 8 months after giving birth. :(
Tharrell - Thanks for this! It looks like autoimmune uticaria is chronic hives? What I have actually looks a lot like hives. I didn't think of that because I've never had hives before, and I'm not allergic to anything. When I first got the rash, I thought it couldn't be hives because I hadn't been exposed to anything new - no new food, soaps, detergents, or clothes. But if they could have an autoimmune cause that puts them back on the table, I guess. If they become chronic I'll definitely get it evaluated since it looks like they can be associated with autoimmune thyroid disease.
LadyDi - I hope the dermatologist is helpful. I'm glad you've taken pictures of it - My husband just did that for me. It seems like there are so many things that "just happen" with autoimmune disease. (Last year for me it was tongue swelling!) Hopefully it's just "one of those weird AI things" and not lupus. :-\
If gluten is a big problem of yours, then yeah eating out can be really tricky. I tried going gluten free once and know how difficult it can be, it didn't do anything for my symptoms. For many though it's a God send for relief. Eat as clean as you can.....
I know with some and diet that anything considered a trigger in even a trace amount can bring on symptoms.
Oh yeah petechiae is a real hoot isn't it? :oI rarely get them on arms (mostly has been legs) but they can look awful indeed. :P
I can get a good old mix of folliculitis too on my legs/thighs which I am trying to help by purififying my pores more. I think we can even over moisturize at times and clog up those pores!
Hi :)
Have you checked all your meds for possible side effects? Just an idea.some things can build up and cause itching.
also get liver function checked out.
Hope you get answers. Nothing worse than constant itching.
Take care - Scottie :)