Vasculitis?

[123MrsG]

I’m interested to learn more about Vasculitis and lupus. I have been getting this rash in the same place on and off for about a year. I’ve only just been diagnosed with SLE and I’m told the rash is linked. My understanding is that it is small vessel Vasculitis and is not causing any harm. My rheumatologist was not concerned by it. There is no suggestion that I have any problems with larger vessels or internal organs. I don’t feel unwell when I get the rash, it’s just a little irritating and itchy. But I can’t help but get a bit anxious when it appears because it is a visual reminder that something isn’t right. Does anyone else get anything similar? Is it anything to worry about? What might be causing it?

[honeybug]

xxx

[Boudica1]

Yes I have a vasculitis rash diagnosed with a biopsy. It seems to me that if your blood test is negative for C-ANCA or p-anca then they class it skin related only and therefore not much to worry about.

Mine is mainly on my back plus they are now also thinking Jessners lymphocytic infiltration.

[Boudica1 in reply to Boudica1]

Tried to add photo's of my back but for some reason can't.

[pmrkitty]

I had a rash like this, it itched and started on my ankles then went on my legs, arms,my back and chest. It did not go to my face or neck. The doctors never diagnosed, just put me on 7 days of prednisone. It took over a month to go away then in February 2017 I became ill with pain all over, my muscles are pretty much gone and was diagnosed with PMR/Fibromyalgia. Now I'm wondering if the rash was the beginning of SLE? I really would like to know. If anyone has any answers for me I would appreciate it. I told the doctors at the beginning of February I thought the rash was the beginning and they pretty much poo pooed it.

[123MrsG in reply to pmrkitty]

I’ve only just been diagnosed with SLE although I’ve been having symptoms for 25 years. The Vasculitis is relatively new to me though and for me I wouldn’t say it was the start of lupus. But I really don’t know for sure because I hadn’t had any tests for lupus until the Vasculitis actually started.

[pmrkitty in reply to 123MrsG]

Thank you. Hope you are getting all the help you need. Hugs to you!

[EOLHPC]

Great photo!

Yes...my small vessel vasculitis manifests in several ways, and one way is rashes more or less like yours on my extremities: face, arms, wrists, hands, legs, ankles feet...

my version of these rashes tends to appear on the areas where flesh is thinest with skin running close over bone eg elbows, wrists, shins, top of the arch...this doesn’t “ itch” it kind of “prickels” in a really nasty way and just plain hurts...i really don’t like these rashes...they are nasty!

In my case these rashes appear a lot less now i’m more adequately medicated thanks to adding myco + pred on top of daily hydroxy etc. When i do get these rashes, i have the strongest version of the topical steroid betnovate on prescription which helps to damp them down.

🍀🍀🍀🍀 Coco

[Boudica1 in reply to EOLHPC]

Mine runs down the spine, I know when a new crop are coming by the prickly feeling. I can also understand exactly what you are saying about the pain if you accidentally scratch it. I have a very strong steroid cream as well to use when it raises it's head, otherwise it can last for months. I just count myself lucky that I can at least cover it up.

[EOLHPC in reply to Boudica1]

Glad of your reply boudica! So it’s more or less SNAP for us! Am glad of your validation! My GP & rheumy agree with this diagnosis, but i always wonder....

Sometimes i use the stronger prescrip topical steroid dermovate...is this your stronger type? My impression is that dermovate is the strongest available, but if there is a stronger one i’d love to know about it!

[Boudica1 in reply to EOLHPC]

Hi sorry to say I'm almost glad it's not just me but I wouldn't wish it on anyone.

At the moment I have Elocon, a cream that comes under the "potent corticosteroid" group.

I also have another dermatologist who says I have a second skin condition called Jessners lymphocytic infiltration going on as well.

Plus until my blood tests are 100o/o proves Lupus, SS and systemic all my symptoms are having to be treated as a separate entity so no one is heading up or taking the lead as far as medications are concerned. Had one dermatologist trying to push me into taking Dapsone totally ignoring the fact I have lung disease's of emphasima, bronchiectasis and some fibrosis throw in for good measure.

Still waiting for nephrology to get their a#@* into gear. It seems that a eGFR of 68 and repeated blood in pee and pain in the kidney area is of no concern at the moment as they don't get involved until you get to stage 3 CKD. Crazy.

[EOLHPC in reply to Boudica1]

Thanks!

This coordinating is SUCH HARD WORK...never ending. Crazy is right!

In my early days of these rashes, i used to miss them starting up and didn’t notice them until they were widespread & quite severe...which helped the drs diagnose them! Now i make sure i catch them super early and i get the steroid topical in action super fast...sometimes i have to use a fungicide topical on them too - due to my PID predisposition to all types of infection, fungus takes advantage and joins the party!

[Boudica1 in reply to EOLHPC]

Yes fungal infections are a nightmare at times. When my rash first raised it's ugly head GPs thought the same as me, fungal so treated as such and when it wouldn't go prescribed betnovate it still stayed so referred me to dermatology. They thought it was an allergy so put me on fexofenadine 180mg once a day. Then they increased it to 2 a day, haha still there so not a number allergy. Finally had the biopsy which showed vasculitis, not fungal or allergy.

The place I can and do get the fungal infections is the oesophagus and lungs thanks to the build up of mucous oh and a side effect of the inhalers I have to have

Can't win can you.

X

[EOLHPC in reply to Boudica1]

Gosh we do have similarities...my things evolved similarly, except no actual lab tests other than bloods...otherwise diagnosed based on history & physical exam & pos response to certain types of medication...even my bronchiectasis...i feel i’ve had this relatively “easier” than you B...am on daily antibiotics permanently for the chronic bacterial infections, but so far no sign fungi infect me anywhere but skin and that’s only been when a vascular rash was in action...you're right: we can’t win outright...our victories are all minis along the way, & on & on...

[123MrsG in reply to EOLHPC]

Thanks for that. I’m going to ask for some stronger steroid cream as hydrocortisone doesn’t do anything for it.

[Bessy01]

Yes I have it on the bottom of my feet ankles and legs, for me it seems To be heat related. It was that bad some years ago the GP thought I had meningitis.

[Hidden]

Me too - I posted about a similar ankle rash recently. Small vessel Vasculitis has been mentioned but they don’t seem very concerned. I have Sjögren’s rather than Lupus. I notice my spots and rashes most when I have UTI symptoms ie +3 blood in my pee which makes me think they are related.

[Lupiknits]

My feet look just like that. It’s worse when I get out of the shower, and I put heavy duty cream on it, then cotton socks. I have to confess that scrubbing at them with a stiff nailbrush last thing before getting out of the shower helps me.I haven’t mentioned it because I only have it in that spot on each foot.

[Crazy_Cat_Woman]

I have what looks like Vasculitis sores on my ankles, legs, bum and back. They still haven’t diagnosed my autoimmune disease (been a year now since first referred to Rheumatology). They itch like crazy and end up open painful sores. Having a skin biopsy next month.

[123MrsG in reply to Crazy_Cat_Woman]

Really hope you get some answers. It sounds really unpleasant.

[Boudica1 in reply to Crazy_Cat_Woman]

Hi, good luck with the biopsy it's good to know just what the rash is.

[KittyJones]

Hi, I have autoimmune thrombocytopenia and lupus. I get the same rash on my feet and legs, sometimes it seems random, other times it's happened after sun exposure. I always get it where the sun hits my feet in summer, even with my trusty sunblock. You can see it come up especially I wear sandals or shoes that expose any part of my upper foot. I get something similar over my knees, more recently. Not yet had a discussion with my rheumatologist about that.

[Brychni]

Hi there - I get this (much smaller spots/flecks) on the backs of my hands. Also, single purple spots/patches and spontaneous bruises. Sometimes I get perfectly defined blood spots on the ends of my fingers and toes which look like blood blisters but aren't. I have a diagnosis of mixed connective tissue with lupus originally undifferntiated inflammatory arthritis.

My rheumatologist is brilliant and very thorough but a bit slim on explanations unless I ask but I'm pretty certain she has told me these things are all associated with the underlying issues.

The spots are associated with all sorts of underlying conditions but rheumy doesn't seem to be concerned that they mean anything is getting out of control. I worry because I have leukaemia and blood disorders in my immediate family. Interestingly when I mentioned that it was the only thign that causes me concern she said that it was another good reason for being on hydroxychloroquine. Can't remember why exactly but it something to do with autimmune blood conditions which, I suppose respond to hydroxyc. or perhaps nip them in the bud.

Trouble is I go into these appointments full of questions, photos etc and then forget everything she tells me!!

Anyway, hope that helps a bit.

[MusicalFurbaby]

Hello, yes I have small vessel vasculitis as well. Mine was causing all sorts of strange sores and rashes, everything from hive-type splotches to spotty rashes to red burning hands to chillblain-like sores on my feet. Thankfully, hydroxy has cleared up 90% of the rashes. I still get the occasional breakthrough sore, but it’s way better than it used to be! As you say, it’s no cause for concern. My doctors are far more concerned about my clotting antibodies. Vasculities just seems to be a pain in the proverbial, more than anything.