Research Study - Survey Regarding Discontinu... - Vasculitis UK

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Research Study - Survey Regarding Discontinuing Immune Suppression in ANCA Vasculitis

John_Mills profile image

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.

Thank you

John Mills.

9 Replies

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.

xz3sgn profile image
xz3sgn in reply to jgold

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 .


jgold profile image
jgold in reply to xz3sgn

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.

xz3sgn profile image
xz3sgn in reply to jgold

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

Suzym2u profile image

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


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 ?

Dear John,

First of all Happy New Year, to you both. Secondly I have 'Filled in', this survey, bearing in mind I have had a Kidney Transplant, and thereby require Immune Suppression in case of Rejection- Potentially Lethal. (I have made these points.) A few years ago a New Consultant, I can't remember his name now, wanted to stop my Immune Medications

IF this can work then I will be happy for others but upset in my treatment as I am now facing losing my teeth & being referred to the dental hospital. I’ve suffered in silence, tried to stay dignified but this hurts. I will update when I know more but the x rays showed teeth looking empty on the inside. I am hoping for better news but preparing for the worst.

I hope this may save new cases from all the things I’ve gone through due to prednisolone plus Valois other of the immunosuppressive drugs. Please do update on the research.


There is a 2017 article written by Dr. Das Gupta and colleagues which suggests that Methotrexate should only be prescribed after a second relapse in PMR. It would be interesting to know the outcome. I don't know if the article applies outside of PMR. I live in the US, so I cannot participate.

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