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Research Study - Survey Regarding Discontinuing Immune Suppression in ANCA Vasculitis

Discontinuing Immune Suppression in ANCA Vasculitis

Suppression of the body’s immune system is at the heart of modern treatment for ANCA vasculitis. But whereas stopping treatment carries the risk of relapse, being immune suppressed carries the risk of infection and other problems. In cases where there are no symptoms and ANCA levels are very low, doctors are still not sure when it is safe to stop the immune suppressing drugs as there is no available evidence.

Professors Lorraine Harper and Alan Salama are planning to carry out a research study to provide that evidence. They need to know how to structure the study and if vasculitis patients will be willing to take part. If you have ANCA vasculitis, please join in this very short survey to help in planning the research. This will not commit you to taking part in the actual study, they just want your opinion. Please follow this link to take part in the survey.

vasculitis.org.uk/news/rese...

Thank you

John Mills.

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A very simple survey and a very worthwhile study. Only takes a couple of minutes, so would encourage everyone in UK to participate.

I declare an interest: Alan Salama is my consultant and he and his colleagues have done me proud over the four years since diagnosis.

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Hi jgold,

I'm AAV patient with impaired kidney. I fall exactly in the condition mentioned here wherein the patient is on low maintenance dose and low ANCA trite of about 4. I was diagnosed with Vasculitis 2 yrs ago and the disease was controlled with in 3/4 months. Thereafter I'm on low maintenance dose. However the maintenance dose has its side effects like fungal/bacterial infection to my nails, skin lesions resulting in excision. My consultant is deliberating on reduction of steroid but ANCA remains low. I'm meeting the doctors on Wednesday. Any idea what has been the follow up by Alan Samana. It will help me to discuss my case better .

Regards

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Sorry for delay in replying, but I have only just seen this.

I don't know where Alan Salama has got to with this. As the survey we were asked to complete was only to see if patients might be willing to participate in a study, and to help structure a study, I assume it will many months - possibly years - before there are any results.

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Hi Jgold,

Many thnx for your response.I think this is the disease,where most of the time, both patients and doctors find themselves on the same side of the fence struggling to understand and manage the disease

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Please keep the surveys coming and thank you to all those who have completed them up to date

Susan

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Done but not sure if it was taken in as when I finished there was a sign in & I believe this should be done prior to taking the survey. Do you think my replies would have gone through please ?

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