Rashes and Vasculitis

[panda2]

Ah! An answer -- almost...

Recently I had communicated with a few of you in different posts about sun reactions and rashes. I ended up getting another itchy-come-burny rash a few weeks ago up both my forearms, uncertain whether it was caused by heat or uv rays.

At my first Rheumatology appointment last summer regarding the whole sh-bang of connective tissue disease, a biopsy was arranged with Dermatology for the crops of urticaria I was getting on a regular basis. This result was just straight urticaria. I had been told by my Rheumatologist to ring Dermatology again if the florid rash reappeared and get it biopsied too. When the rash returned this time and I rang, I got a disgruntled doctor's message that he didn't appreciate the way I just rang them. He said I had urticaria, nothing else. He would need me to get my Rheumatologist to ok any biopsy. So I did. Several days went by while they sorted this out between them, all the while my rash was beginning to peter-out and of course I was feeling like a bother again. Suddenly -- reluctantly -- yes -- biopsy today. The doctor was still disgruntled. On first glance he said it was straight urticaria. It wasn't vasculitis, as my Rheumatologist was wanting to either uncover or not. He said this would draw a line under it. He left me with the nurses and said he'd see me for biopsy results, again making me feel like a bother, though I was able to shrug off the feeling. I knew I needed this biopsy.

Fast forward to yesterday's appointment. I was ushered in by this same Dermatologist. He wanted to know everything now. So I started my speel at break-neck speed, telling my story from start to finish for the umpteenth time, pictures, show-and-tell objects, omitting what didn't seem relevant to that dept to keep up the pace. Because he didn't offer the biopsy results straight away I assumed it was straight urticaria again, but when he sat back for his speel, he told me the report said there actually was vasculitis... (though he needed to speak to pathology because the obvious markers weren't there and he had questions); there were also clear patterns to show autoimmunity because I had perivascular lymphocytic inflammation... Suddenly he was urgent and gave me 2 new prescriptions to lessen the histamine response (I thought I had tried them all) and said he was sure that my Rheumy was going to agree with him that my Hydorxychloroquine should be doubled immediately. He would like me to consider going for light testing in Cardiff, the nearest centre some 4 hours away. He gave me pages on solar urticaria, but entertained the thought with me that the flares could be caused by heat.

When I told him the sunlight/uv problems had utterly changed my life for the worse, a flash of emotion filled my eyes which I was embarrassed about and quickly pushed away. But I realise in retrospect it was essential. He was kinder then as well as urgent. He said he would be leaving the hospital in the summer, but he would make very clear and careful notes so that I didn't have to go through it all again with the next doctor. He would write to my Rheumatologist right way and pass this information and his suggestions on.

As it always seems to paradoxically happen, I find I'm quite happy for the diagnosis (or sort of diagnosis). But now I've got a whole heck of a lot to learn about urticarial vasculitis, possibly small cell immune dependent vasculitis? How many of us could be doctors by now....?!

Thanks for reading. : )

Panda x

[Hidden]

Oh there’s so much in this post of yours that strikes a cord with me Panda. I’m glad you are getting somewhere at last and also glad that you clearly penetrated the brisk exterior of this compassion fatigued dermatologist. Shame he’s off to pastures new - hopefully having learnt something from your case first- but it sounds as if he’s at last fighting your corner too now and that’s a big hurdle overcome I think.

Best of luck with your research. I too have been looking at various forms of ANCA negative vasculitis for some years. I think vasculitis is the one area of rheumatology that could account for my most systemic signs and symptoms - and perhaps, at last, my doctors are starting to track it down. For me Hydroxy actually caused Urticaria but that’s another story. Xx

[panda2 in reply to Hidden]

Hi Twitchytoes,

Ever so grateful for this reply. I remember reading about vasculitis in some of your posts. I will probably have some questions for you down the road, if you might indulge me. It's good to read that your doctors have your number on this now and interesting about your thoughts that the vasculitis is causing the systemic symptoms. I am also thinking that.

My ANCA was negative too. It was the first thing tested after ANA (+) and ENA (SSA antiRo+). The Neurologist ordered it after saying, with a great sweeping gesture, that there was definitely something wrong with me and what I had was either SLE or Vasculitis, or both. I guess the vasculitis idea went back off the table at the negative ANCA point. Until now.

Yes, I am feeling a bit of regret that this 'compassion fatigued' (I like that!) Dermatologist will now be exiting my case, but I'm also feeling hopeful that there will be some more suitable answers coming eventually. And I'm getting a tougher skin regarding all the doctor interactions. Recovering from appointments is getting quicker and easier. : )

Thanks again. xx

[Lisalou19]

Hello Panda2,

Would you be able to share a photo of your rash with me. This disease has been put on my list of possibilities.

The rash I get is sometimes not consistent. It really ranges in severity. Most recently my hands have become affected. Constant red appearance under the skin on my palms, numbness and stiff. Do you have any of these symptoms too?

I’m glad you are finally on the road to possible victory. I’m tired now of being made out to be a mental case with symptoms in my head Evan though I have a library of photos!!!!!!

I’ve got an appointment on 6th June. Trying really hard to keep it together

X

[panda2]

Hi Lisalou19,

Just added a pic for you. It was on both arms and nearly meeting on the inside. Backs of hands severely affected. It started out with extreme itching before I could even see the rash. Then whoosh! All red and spreading for about 2 weeks, when it started to calm down again.

I've gone back and read your posts to see where you're at and, my, you seem to really be having a tough time. And 3 kids to boot all on your own??? Many of us can relate to the fact that people don't understand. They do seem interested in the rashes (because you can see them), but then they just think -- well it's just a rash for goodness sake. Not helpful! You've come to the right place. This forum has been a godsend for me, just reading how others are doing and coping with the day to day, the diagnosis or lack of, different medications, little tidbits of medical news, the various consultant interactions and just knowing that we all have various consultants!

You must be so glad to have that Rheumatology appt in a few weeks time. Definitely take pictures of your rashes and and notes (and pics where possible) of your oral issues (dry mouth, gum disease), the nose ulcers and the fatigue. What I couldn't get from your posts (or perhaps missed?) is if you've had the ANA/ENA testing yet? One would hope the Rheum would have done that at the first meeting. These results can take months, so even if it has felt like a looooong wait, no one can do anything appropriate for you until the results are in. Even then you might not get a diagnosis because blood results then have to be matched with symptoms and sometimes blood results neg or positive will mean that you have to get more bloods done. If there is no diagnosis this visit, please don't worry, you will be treated when they get the information they need. Meantime, there is always the pool of GPs who will prescribe relief in some form or other.

I would suspect they would want to biopsy your rash. You would need to have it done during a flare. (I was told by the dermatologist that vasculitis will be present in the skin for 2 wks after, but during an established rash is definitely best.) Do be prepared for the rigamarole I just went through, where one department needs the ok from the other. Your Rheum would be the one who will lead the hunt and medications and hopefully will put in a call to Derm so they are ready and have you on file. Last year I waited anxiously through a 6 week rash for Rheumatology to set things up. My GP told me to send pics to my Rheumatologist's secretary, but by the time they got this in order the rash was long gone. I had to wait until I got an urticarial flare for my first biopsy, which were spots and were just urticaria. They were trying to say I had contact dermatitis, but I knew this to be untrue. Thankfully you've had all the testing for that so they can't slough you off. This second biopsy seems an important key for me to unlock what my developing diagnosis will be.

You asked about my hands. Not numb or stiff (though my fingers were horribly stiff and two were slightly swollen before Hydroxychloroquine, fine now). But my palms are crazy itchy in the evenings. They are less so, but still so in the day times. I haven't got the blotchy pattern..yet.

Wishing you all the best through your journey here. Let us know what happens after your appt in June.

Panda x