I have MPA and take MMF daily and have done now for 5 years, currently have reduced my dosage down to one and half gr a day. All the advice out there for vulnerable people over 70 is never about Vasculitis conditions. I would like to know that If I were to have the start of symptoms should I then stop or reduce the Mycophenolate in order to give my immune system a chance to fight off the virus?
What would you do considering that its really difficult to get hold of the usual doctor you see?
This is a question that I would like answered too. The obvious answer is to ask your specialist. The problem is I can't get through to them.
My situation is that I have GPA and a kidney transplant (1st year anniversary tomorrow!). I also have low level antibodies against the donor kidney, so I am on 3 immunosuppressive drugs (inc. Mycophenolate).
Happy anniversary to your kidney, I don't know the answer to the question tho
The advice from doctors is not to stop your medication without medical advice. It can be hard to get through to the hospital by phone, so maybe email them.
There is advice on the vasculitis UK website if you need more information.
Yes I am doing just that isolating myself and now my wife is also doing the same as she said she would hate to be the one who passes covid 19 on to me, we met when she was just 15 years old have 4 children and 13 grandchildren, got married when she was 18, We are now doing our shopping on line, something we have never done before and we will sort something out for our meds plus my lovely daughter and our older grandchildren will help so hopefully we can get through this difficult time, Hope you all get the help we all should have , wash hands, keep safe and be positive, 🙏😊👍🤞
Hi
You need to speak to your consultant. I got through to mine I have Wegners Granulamotosis I was told to self isolate and if I do get Covid-19 I had to stop taking my azathioprine until I feel better! However they said my best option was not to catch it!
Thanks
I have seen this advice from one of the Vasculitis consultants at Addenbrookes.
From a practical perspective we are advising most patients that develop Coronovirus or any severe infection, to temporarily stop their immunosuppressive medications (but not their steroids), to assist with quicker recovery from the virus. Some patients on low dose steroids may require a temporary increase in their steroids if they are hypoadrenal or suspected to be hypoadrenal. If patients need advice on whether to stop immunosuppressive medications they can call the vasculitis office.
For all other advice on precautions re catching COVID19 and management of symptoms of COVID19 patients should refer to government guidelines and NHS 111.
I hope this is helpful but obviously you should take advice from your own doctors if you can get through. Stay safe everyone.
Thank you for your post Mooka that's good to know. I hope of course that none of us need to consider going this far.
The British Society of Rheumatology also says the general advice is to temporarily stop immune suppressants, but of course to check with your consultant. I’ve printed that out, and the advice above from Addenbrookes, in case I need a decision made by someone other than my consultant. Sadly, in my experience, so few doctors really know about vasculitis, I plan to take these documents with me if I need treatment. I also wear a medical alert bracelet with my diagnosis and medications, especially for the steroids which must be continued. Here’s hoping I and all of you never need to use any of these preparations we’re taking. Take care everyone 🤞👍
negative results for inflammation on blood tests
Covid jab
Help needed!
PET-CT Scan for LVV
