How strange.......
When I was 21 yrs old I was diagnosed with PAN (kidneys affected) full remission after 5 years the when I was 51yrs old I was diagnosed with GPA Lungs affected with coin lesions).
What are the odds of this happening and has anyone else had this happen to them or am I a good case study ?
Sorry to hear that 
The first thought that occurs to me though is to question whether the first diagnosis was right. Is it possible that you had the same vasculitis process running throughout? I'm sure others will be more qualified than me to comment (Lynn maybe?) but I have heard before of misdiagnosis with one type of vasculitis being later changed to another.
Are you getting adequate treatment for the GPA? Best wishes anyway.
i agree with your thoughts my first diagnosis for PAN (1981) and dont have any records for that time .....however I wondered whether it was connected with GPA (2013).
What i am trying to understand is whether when I had PAN in the early days, is related to 30 yrs later with GPA has anyone done experiences or done studies on this ?
Well my question was really about wondering if you didn't have PAN back then, but rather something like GPA, which was misdiagnosed. Then treated, went into remission, but relapsed decades later, as can happen. These are very rare diseases, and I wonder if that might be a more likely explanation than 2 different vasculites.
Of course you could just have been the very unlucky one to have both 
I don't know of any studies into this. Sorry. Hopefully others can help!
Yes, since I have had this before I know the signs, I am in Madrid working at the moment and am being managed by a Dr here.......they really dont have much experience, it was me who suggested another dose of Rituximab to get my steroids down and into remission......as last year I relapsed and had to go back to 20mgs (Dec 2016). I am currently down to 12.5mgs and intend to stay at this level until end of the year. Sometimes the Dr's want to rush you off the steroids and I understand why, but GPA has a high % of relapse.
I was diagnosed with cutaneous PAN aged 26 after a similar time to you I had full remission and it became just an odd addition to my medical history that most Drs I came across just ignored. Then aged 48yrs I was diagnosed with ANCA Vasculitis MPO positive. My consultant said then that I was probably a relapse of my original illness and as medicine had now moved on they were better able to distinguish MPA from what had previously been thought to be PAN. I am now 52 and unfortunately don't feel as close to full remission again as I would like, but I'm older and have developed other medical issues so I suppose good health is not so likely anymore.
I think our stories are quite familiar so I guess it can happen, best wishes
While it's theoretically possible to develop more than 1 Vasculitis variant it would be rare. I suspect that your original diagnosis of PAN may have been wrong as its one of the rarer Vasculitis varsints.
Have you asked your Consultant for their opinion?
Hi
I think the main difference for me as I understand that when I had GPA (lately) my ANCE was positive and not the case with PAN
I don't think that's a definitive measure though. People's ANCA readings can IMHO change over time. So I'm afraid it's still possible - and far more likely - that you were misdiagnosed originally, and have the same disease process throughout.
Just to let you know I am being looked after ok but since I have had this before I know the signs, I am currently working in Madrid working at the moment and am being managed by a Dr here.......they really dont have much experience, it was me who suggested another dose of Rituximab to get my steroids down and into remission......as last year I relapsed and had to go back to 20mgs (Dec 2016). I am currently down to 12.5mgs and intend to stay at this level until end of the year. Sometimes the Dr's want to rush you off the steroids and I understand why, but GPA has a high % of relapse.
I wonder if it would be worth you contacting the Vasculitis UK helpline for more advice re your case, and to make sure you are getting the best treatment? You can contact them by email - see
Also some of the UK specialists will liaise with other doctors re advice.
Glad you suggested Rituximab I know the feeling. I insisted on trying Cyclophosphamide, after years of my consultant ruling it out for fertility + bladder incontinence (mine is dire cos of brain damage - he didn't want to make it worse) concerns. It's good when patients can be confident enough to speak up. But we shouldn't have to!
Good luck!
I ve was diagnosed in 2013 when I was working in Qatar and the Dr there was Sudanese and he was very good......I had Rituximab x3 times with him, once per year.......and this July it had been over 18mths so I thought I had better suggest it as the Dr's aren't really up on vasculits
I will check out the helpline many thanks......I have an open appointment with a Specialist in teh UK and was supposed to see him in Nov but I will not be in teh UK so I may have to postpone it until March 2018.......but I really want to get medicated from the UK if I can.....
I have been in touch with John Mills before.......I know he has been ill recently
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