New here - could this be Uticarial Vasculitis?

Hi - I'm new on here but not new to HU because I have Rheumatoid Arthritis and autoimmune Hypothyroidism.

I'm hoping someone can help me here. I came off injectable Methotrexate four months ago because I had widespread parasthesia (pins and needles, numbness and icy cold, wet sensation) which no one could explain. I was also suffering from mildly dry eyes, circulation issues and spots on my face which were itchy and sometimes landed inside my nose, causing nosebleeds. These spots have been an issue for me for 2 years - arriving around the time I started on Methotrexate. I would only have one or two at a time and they were like bites and I assumed the MTX was the cause. Then my scalp started to itch during a time when I came off the Methotrexate and Hydroxichloraquine which had been added in. I started again because my RA flared up and my ESR rose high again. I stopped four months ago because of various symptoms, some of which were intolerable and others which the GP thought might be serious but rare side effect to my peripheral nervous system.

I ended up taking Prednisolone for a month because my feet were sore with RA inflammation, and then, as I tapered off in time to see my rheumatologist last week, the spots on my face became bigger and itchier. Last week they multiplied into a red, raised rash on my forehead and my face and mouth were swollen and itchy. I am now on antihistamine and also taking Hydroxichloraquine again. The spots have gone down but I have a bit of scaring on my forehead and new spots are arising elsewhere on my face and neck. My blood markers (Rheumatoid Factor and ANA) are currently negative and I believe Rheumatoid Vasculitis only occurs with advanced and sero positive RA so I don't think it can be that.

But I was interested to read tonight about Uticaria Vasculitis and wondered if my symptoms appear to tarry with this condition? I had little joint pain or swelling at the time my rheumatologist said we should buy some time with Hydroxichloraquine and see how I got on over the next few months. He noted with interest the hives and the Raynauds/ Sjogrens type symptoms but didn't suggest a cause. The more acute outbreak of hives came a few days after this consultation and I've been feeling exhausted and today the joint pain is returning but once again it feels very flu-like and systemic. I still have the parasthesia and circulation issues in my legs and feet. My full blood count of two weeks revealed nothing apart from low Basophils, a high PVC and a raised ESR of 52.

[Lupylass]

Hi there and sorry to hear you're having a rough time of it.

It's difficult to comment on your rash and I'd suggest a referral to a detmatologist for diagnosis. My urticarial vasculitis was diagnosed on biopsy, although they suspected it visually and based on my symptoms.

One of the key questions I recall them asking was whether the rash was itchy, and mine wasn't. It was painful, like sunburn. My understanding is that this is typical of urticarial vasculitis. The hives also last more than 24 hours in each location.

[Hidden]

Thanks Lupylass. I will push the GP tomorrow for a dermatology referral. My hives are only in my face and neck and are itchy rather than burning. They do last longer than 24 hours and do leave little scars and scabs sometimes. I had read this too can go with UV.

Last time my whole face and lips swelled with it so its getting worse - but the antihistamine is so far keeping it in check to an extent.

I would discount Vasculitis from my journey but for the parasthesia in my legs and the fact that I have RA and Hypothyroidism - which mean that all autoimmunity is in the frame. But I don't think mine can be UV unless its the milder version I read about.

RArebird

[AndrewT]

Dear RArebird (what a great name!)

As was said above, sorry that you are suffering- I do hope 'they' can sort you out, to some extent anyway! Regarding you symptoms- I don't know exactly, that's the 'trouble', with vasculitis/auto-immune conditions, I also have Rheumatoid Arthritis along with 'uncategorised' vasculitis (about five different strains, is estimated). The important thing is that 'they' find the right treatment, for you, and yes this may well take both time and a lot of 'adjusting', to achieve the right result. I have recently, four months ago, had a kidney transplant; having been on dialysis, for about four years- the vasculitis attacked the kidneys (along with other 'bits').

I hope that the above is of some help, to you, please feel free to contact this 'forum' again, should you need to- they don't bite! (well not hard anyway)

Kind regards

AndrewT

[Hidden]

Thanks a lot AndrewT. Poor you re the RA with five different strains of vasculitis.

Everything with me is just so vague currently including the RA. Hence the name because I don't seem to fit criteria for anything but I'm obviously just not very well.

I asked GP this morning if she thought my problems (hives are really bad on face again today) could be Vasculitis and she said she certainly wouldn't rule it out. She didn't refer me to a dermatologist as she felt she needed to rule more obvious causes out first took a full blood count plus extra tests for allergic responses. She said my rheumy is aware and concerned about the skin issues and other connective tissue stuff too but my ANA is negative so not Lupus.

I don't think my kidney function flagged up ever - unlike my liver, when I was on injectable methotrexate for 19 months. But when I had an ultrasound scan the radiographer became preoccupied with a large kidney cyst that was just about within normal range (took her an hour plus a colleague to decide this!). She did say that kidney problems don't always show up in blood or urine tests.

Other than this and a high ESR nothing much is clearcut with me - rare combinations, rare side effects to drugs, rare inability to let things drop, hence my HU name!