Advice please

[Georgie-girl]

Hi,

I'm hoping someone can help me here. I have sjogrens and PMR but have always had feelings of blood flow issues. My mother had this also. I have recently been diagnosed with air trapping in my lungs due to small vessel inflammation. I also developed a rash on my legs but my rheumatologist put this down to varicose vein issues. This soon cleared up though as I'm taking prednisolone 10mg daily and mtx 15 weekly since my last sjogrens flare. My last ANCA test was negative.

My problem is that I am now showing all the signs of a certain vasculitis with chest, stomach, sinus, eye and ear problems and am in some considerable stomach and chest pain, but my GP keeps telling me to wait till i see my rheumy next which is in April. I have been reading about vasculitis and learned that it can be fatal and treatment needs to start quickly.

Do I wait to see my rheumy in April? Is there something I can do to get my GP to take this seriously? Should I perhaps go to A+E? Can they do anything? Can you be ANCA negative and still have churg strauss or wegeners?

Any advice would be greatly appreciated. Thank you.

[Katie18]

Hi Georgie- girl I would go back to your GP and say you need to see someone sooner. I’d ring the rheumatologist secretary & explain your symptoms are getting worse. I’d try the 111 helpline and if all that fails yes I’d go to A&E. You are right you need to get treated sooner rather than later as Vasculitis can do lots of damage. Ring the VasculitisUK helpine to talk it through with them too. Good luck

[Chris-Bromsgrove]

Hi Georgie-girl, You can be ANCA negative and have ANCA associated Vasculitis, particularly in the case of Churg Straus, although your symptoms sound more like Wegeners (GPA), not that I'm saying it is definitely either. Positive diagnosis is normally through a biopsy of affected tissue. I would certainly press for an earlier appointment but more importantly whoever you see needs to have experience in Vasculitis. Some rheumatologists do treat vasculitis but not all have experience in that field. The Vasculitis help line will give you names of hospitals in your locality that have expertise in this disease. Hope you get it sorted. Chris

[Georgie-girl]

Thank you both very much for your helpful information. I have an app with my GP later today and have left a message with the helpline for a call back. Hopefully I will get something sorted and move forward. Thanks again. X

[Paprika60]

Hi, I do hope you have found a solution by now but if not, you must (!) go to A&E if your GP keeps you waiting. I totally agree that you need to find a Vasculitis specialist. If you don't have one in your local hospital, do travel and go to one nearest to you. It will save you much time and effort to go directly to the specialist. Otherwise they will keep referring you to someone else and etc and months will pass by while you are suffering. The sooner you have it sorted with a right doctor, the better! Good Luck!!!

[Georgie-girl in reply to Paprika60]

Thank you Paprika.

[2534]

Hi there

I certainly concur that you need to go urgently to a Vasculitis specialist. I know Prof David Jayne at Addenbrooke’s is the tops and,as I do not live near, he recommended ( therefore good recommendation Oliver Flossman at Reading or Raaschid Luqmani at Oxford. I chose to stick with Prof Jayneand have been very grateful to have found him.

Blessing on you at this difficult time. A