Hello, my husband is waiting for his first consultant appointment so it just at the GP diagnosed stage with Vasculitis. At the moment his biggest problem is a rash that started just after Christmas on his legs and is now spreading: it covers most of his body. It is incredibly itchy and sore - like burning itchy sunburn he describes it as. It is definitely worse at night, so much so that he is hardly sleeping, which is just making everything worse understandably. We have tried Sudacrem, DoubleBase and a hydro-cortisone, all of which work for a few minutes but then it gets worse again. His skin is red, sore, and feels like it is burning, it has raised pimples also.
Has anyone else experienced this and if so, do you have any advice or treatment that worked for you?
Thank you for anything you can say to help us, at this stage we are so in the dark, but he needs help and we cannot wait for the consultant's appointment to come through.
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When I was holidays in Sweden I came up in a rash like the one you are describing for your husband. I was crying with the burning itching and had lumps all over my legs. Unfortunately none of the creams worked but evenly the rash did reduce and even fade. I later ( a lot later unfortunately) realised it was caused by the vasculitis.
I suggest you go back to the GP and ask him to what can be done to get the hospital to move faster. Once my GP through I had a problem he sent top the local hospitals day case ward to have tests over a period of two days to confirm his thoughts and once the test results were through I was sent to the approprtaie hospital and they started my treatment the following day.
I was first given the diagnosis of ANAC associated Vasculitis. This was because the blood test had shown one of my antibodies (ANAC) was out of control. ANAC can be associated with about three different types of Vasculitis. However because the treatment is more or less the same for the people at my stage regardless of the individual condition I was started on treatment before they knew exactly what of vasculitis it was .
The treatment initially given was high doses of steroids (prednisolone) given intravenously at first and later on in tablet form. I was also started on cyclophosphamide also given intravenously. After my first treatment I was scheduled as a day case for a kidney biopsy. By looking a type of damage that had been done to my kidneys they were able to say I had Wegener’s Granulomatosis . This condition has recently been renamed as Granulomatosis with Polyangiitis.
However a number of vasculitis conditions have symptoms in common so your husband my not have the same condition as me. He may require different treatment. What is important that is if he has been diagnosed with vasculitis he gets treatment was soon as possible.
Jann is absolutely right; getting swift treatment following diagnosis is very important. You are clearly already suffering with your skin rash but typically vasculitis also damages internal organs such as the kidneys. My first consultant was fantastic; he diagnosed me in the morning, following blood results which showed high levels of the ANCA antibody. By the afternoon he had found be a bed in the renal ward and I had a kidney biopsy the next morning. I had my first infusion of prednisolone that evening. It’s worth pushing this with your GP and ensuring you get a consultant who is fully familiar with vasculitis.
Thank you Chris - he has had some bloods done with the GP but we are waiting on more results which they said can take up to two weeks, the same time in fact as we can apparently wait for an appointment with a consultant. We are only in Bewdley and if your online name is the clue, you are not far away. If it is not too personal, or not forbidden on this forum, can I ask who your consultant is and where you see them? Thank you for your words, we really do appreciate them at this worrying time. Michelle
All of these posts sound very similar to what my friend is suffering. The problem is her doctor is saying there is no cure and she just needs to let the rash disappear but it is getting worse. The doctor did confirm she has vasculitis and that it was likely caused by a kidney infection. She tells me she has awful pain and to start with the rash was not sore or itchy but it is now very itchy. She doesnt know where to turn
I have been experiencing the same issues. I was diagnosed with leukocytoclastic vasculitis. I have had a complete blood panel, ANA, urinalysis, and skin biopsy. Nothing is showing to be the cause or underlying factor. My primary doctor did not want to give me a referral and told me it was because I am overweight. The odd thing about that, I saw him originally before it had gotten much worse and he nevered weight as an issue. I have the referral now, and am hoping to see the rheumatologist soon. Has anyone else had weight mentioned? With ALL my research, I was not able to find anything that supports his claim.
Get an oatmeal bath. Although it may sound weird it works. My friend had a rash from her big toe all the way up to her stomach so I told her to get an oatmeal bath and it worked.
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