New to Vasculitis: Hi, I am on here to see if... - Vasculitis UK

Vasculitis UK

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New to Vasculitis

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Hi, I am on here to see if anyone can share their knowledge for Rheumatoid vasculitis, the Dr reckons this is something that I may have and I am seeing a rheumatologist at the end of July, so any help is gratefully received :-)

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Hello, Rheumatoid Vasculitis (RV) is a serious complication of rheumatoid arthritis (RA) where there is inflammation of the blood vessels. It commonly affects the skin causing rash and ulcers and the nerves causing loss of sensation although any part of the body may be involved. Have you ever been diagnosed with RA, maybe when you see the Rheumatologist they will test for that first. I have had RA for over 30 year, and diagnosed with RV in 2014. For more information about Rheumatoid Vasculitis, visit vasculitis.org.uk/about-vas...

in reply to

Hello Poemsgalore1, thank you for your kind reply. I am at a loss at the moment with everything going on. I have had RA for a very long time, but I have never suffered much with it, it is something that we have in the family and I have learnt to live with it. Fours years ago I suffered with my first HA and then two years ago I suffered mt 2nd one, and it is since then that I have had problems with my liver, loss of sensation in my toes along with tingles. My legs have had a red rash under the skin and it keeps coming and going, it is only these last few months that it has become increasingly worse and now it comes and stays, legs look horrendous, they got so bad that I went to the A&E to be told thankfully that I don't have meningitis or Sepsis, that's how bad the rash looks. I keep getting chest pains, but I have now seen that is a side affect, along with lots of other little ailments that I have. I have to wait to see a NHS Dr, although I have to say the appointment only took 1 day to come through and now need to wait until the end of July to see a Dr of Rheumatology who deals with the whole realm of RA.

Thank you once again for your lovely answer it has certainly helped me, it is good to have a forum to talk about it. Wishing every when well, as well as we can be expected.

in reply to

I'm very happy I could help a little. There haven't been too many with RV post on here. The website of Vasculitis UK is amazing, no paid staff at all, as the members are so knowledgeble about their own particular variety of this disease, and John and Susan Mills are so helpful and man the helpline along with others. I agree with you about the rash, although I had a punch biopsy at the Dermatology department which showed it to be Nodular Prurigo, but he wouldn't treat me systemically as I had just finished cancer treatment. So I showed it my rheumy and she said Vasculitis, and started treatment immediately. My feet are 'dead' and al the stated symptoms are present, although my rash is now minimal. Two HA's my goodness, I also have Costochondritis, and as my pain is mostly on the right I usually put it down to that. Please let us know how you get on at the Rheumy appointment.

By the way, I've had sepsis (shudder). :-O

in reply to

Thank you for your reply, it is nice to know there is a forum with lovely helpful people, especially when you are at a loss as to what is going on, I am hanging on this appointment and it can't come quick enough, although my GP has started me on steroids as that is the route that he said the Rheumy will go down. Golly, Sepsis, when I went to A&E last week the first thing the E Dr was to rule out Sepsis and meningitis, which kind of blew me away as it didn't even come on my radar :-( I just googled Costochondritis, I have a lot of chest pains with this and even went to the A&E a couple of months ago thinking it was a HA and of course it must have been RV. My toes are tingling and part are a little numb but of course none of this occurs to you until you start reading about it and then if becomes very scary.

Thanks for chatting, it has certainly helped me :-)

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