Strange rash. ANY IDEAS?: I am having this rash for... - LUPUS UK

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Strange rash. ANY IDEAS?

Feniagr profile image
6 Replies

I am having this rash for 1.5 month now. It's not itchy, not painful, not hard skin.

It suddenly appeared, remained stable and in the 5th-6the week it became more intense for 3 days being hother and textured (the photo is when it was worsen). Then, it started fading out and Within 2-3 days you could barely see it.

I had the same rash on different shape (it was a smaller and oval) on the same place 4 months ago and 1 year ago with similar behavior.

Some.more info!!!

It doesn't look to worsen on sunlight. No.other rashes on body.

Examination for autoimmune - ra and systemic lupus is negative. Also general blood testing with normal results.

If anyone has any idea what this could be please tell me. I have asked 5 dermatologists and nobody knows.

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Feniagr
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panda2 profile image
panda2

Hi Feniagr,

Did they consider/do a biopsy?

My first forearm rash, which also lasted 6 weeks looked similar but was itchy. The subsequent ones, which lasted only 1 - 3 wks, appeared with much less itch, but did the same hotter and angrier thing you mention.

I do have positive ANA and am Ro+ which makes me particularly susceptible to sun reactions. However, I am convinced the sun did not cause mine because they would happen after I had been fully covered. Eventually a biopsy was done and, though I'm still waiting on a complete follow-up histology report 4 months later, the dermatologist went over the early results with me and said it was urticaria with indication of vasculitis. At the same time he wondered about Mast Cell Activation Disorder and put me on Montelukast coupled with antihistamines and suggested my Hydroxychloroquine dosage be doubled. My Rheumatologist wouldn't double the dose of Hydroxy because of my BMI, but though it has taken these four months, after getting new rashes every couple weeks over the course of a year, I am wondering that they have stopped (for now anyway)...

So, perhaps an urticarial mast cell disorder question could be raised with one of your dermys? It is a relatively new disorder, not getting much attention until 2010. It's possible, if your dermatologists are older, they may not have much experience with this and may not think of it. My Rheumatologist was impressed with my young Dermatologist's diagnosis and told me to press on with the Montelukast and antihistamines all these 4 months. And now, at about 3 months, I have noticed the rashes have not recurred, despite sun and heat, which were the questionable culprits before.

I know this is such a disturbance and must be even more frustrating when no blood markers are getting in line with a treatment for you. With exception of the ANA+ and ENA+, my general bloods are virtually always normal too.

Wishing you all the best with this.

Panda x

Feniagr profile image
Feniagr in reply to panda2

Thank you so much for your interest and answer Panda.

The only dermatologist I trust the first time thought it was because of the fact that I had strep.throat. He prescribed me antivirus and the rash dissapeared.

Days after cleaning strep throat & stopped the antivurus it appeared again so he thought though may be skin lupus and I started using cream with cortisone. Using cortisone it dissapeared too but after some days I had stopped it, the rash appeared one more time. So I continued the cortisone but instead of dissapearing remained stable and then more intense (it is in the photo) so Ithat was like cortisone didn't work for the rash.

My dermatologist suguested stopping cortisone and take biopsy on the end of the month. So did I. But my rash dis speared.

Bad timing....

panda2 profile image
panda2 in reply to Feniagr

That is such a shame about the timing of the rash and your biopsy appointment. I know the stress of needing biopsy results and having the rash for weeks and just watching it fade by the time the next appointment arrives. Perhaps by some miracle it will come back... Awful when we think that way, isn't it. Do you know what might trigger it?

My Rheumatologist just told me to ring the Dermatology dept when my rash appeared. It was a bit of a palaver. No one was happy with me just pressing myself on them that way (and I felt like such a bother), but it was effective in the end. I was brought in for the biopsy pronto and there were results. They just deferred an actual appointment with the dermatologist until they could fit me into their schedule. Perhaps you could say something to your Dermy next time, asking if they do biopsies on the day or within a few days of you reporting a rash? Because otherwise it's just a crap shoot and I do think they know that, particularly if it's a recurring rash.

All best! x

leslieliesel profile image
leslieliesel

I am with panda2 on getting a biopsy...That is what I did ..finally...after years of rashes on and off...and tired and achy ...but I though, who isn't tired and achy...but last summer I HAD to address my rash..had a biopsy and tests and here I am..in the group!!Xx

Feniagr profile image
Feniagr in reply to leslieliesel

Hello my friend thanks for your respond. I am going to do a biopsy on the end of the month. my rash dissappeared so I do not know if I can do it now 😥

Feniagr profile image
Feniagr in reply to leslieliesel

Did you had any positive ana results before the biopsy?

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