hi, I have GPA have been diagnosed since 2020. I am considering changing hospitals that deal with my care, as I just don't feel like I'm getting the treatment and care that I need. I've not been on treatment for a year now, after the immunosuppressant beginning with A that I can't remember the name of, gave me such severe and debilitating nausea and vomiting that after only 7 days my consultant took me off it. I've only seen my consultant twice in a year, and despite abnormal blood results, and significantly worsening symptoms, he's no suggested any tests or treatment for me and I can feel myself deteriorating rapidly. I saw him in October and he has asked my gp to do my bloods again to check on them, but other than that despite me explaining to him the various new and worsening symptoms, he offered no treatment and has simply booked me in for another out patient appointment in 6 months time. My GPA has never been in remission. My GPA was triggered into being active by a 6 month long cocaine habit, because I went through a very personal loss, and I couldn't deal with the emotional trauma and hurt from the loss, so I briefly turned to drugs as a coping mechanism. That was in 2018, and as said only lasted 6 months, but I can't help but feel like whenever I go, my consultant knows what triggered my GPA, and despite me telling him I haven't used for years now and it was just a short period, I feel like im being kind of treated like im "just a drug addict" even though it's been years and I got help very quickly when I was using so it was only a few months, but I get the feeling like because im the one to blame for triggering my GPA into becoming active, I'm not being offered the same treatment as someone without my history would. So I'm wondering whether it's worth trying to move to a different hospital? My current consultant is a specialist in vasculitis, but it's 1.5 hours away, and I'm wondering whether I try to find a more local hospital but they may not have much experience with GPA.
Can anyone advise if there is a way to find out if any of the doctors at a hospital are specialists in vasculitis or have a fair amount of experience with GPA? I've got 2 hospitals within 35 minutes of me, but I don't know if either of them have much experience with GPA and was wondering if there's a website or way you can find out?
I am in Buckinghamshire, so if anyone is at either Stoke Mandeville hospital or Milton Keynes hospital, especially if you have GPA, can you advise what you're treatment has been like and I don't know if you're allowed to name consultants on this page but if you are allowed could you tell me which consultant you are under? I have very severe ENT issues (total loss of my entire nose and 80% hearing loss & big cavity/hole between back of throat and back of nose causing multiple severe throat infections) so is anyone under ENT at either hospital and are you happy with your treatment? if there is another hospital within about an hour of Aylesbury or Milton Keynes, as I'm between them both, that has specialist vasculitis doctors please let me know. Thanks you, Sarah x
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It does seem from your post that your care has not been up to the standard that’s expected especially as you say you are being treated by a consultant with experience in vasculitis.
Have you contacted the vasculitis helpline they may be able to point you in the right direction.
Your treatment should not be affected by your previous cocaine habit, and I would have thought you would have been offered alternative drug therapy if AZA was not working for you. Were you offered RTX or Cyclophosphamide?
As main1234 has said the the vasculitis U.K. helpline a call. They may be able to give you a few suggestions. It sounds like you aren’t on any immune suppressant which is shocking. Aza is not usually given on its own to achieve remission. I moved my care 11 years ago and it was the best thing I ever did. Your previous drug habit should not be held against you. You will probably need to get your GP to refer you to a new hospital. Good luck let us know how you get on.
Unfortunately specialists with an interest in vasculitis are thin on the ground!
As you are already under the care of one, it might be worth trying to work with him first. Perhaps a list of the problems concerning you, summarised into date order, together with an enquiry as to what plan he has for your future management? Send it to him and ask for a review? It sounds as if he hasn't been hearing your worries.
You may be right and his emotional response to your past drug problem is making him put up barriers to dealing with your present state, but this is so common a complaint from us all that it may be he just hasn't taken on board how you are and how you feel. Sometimes we have to persist on being heard.
Hello, I was diagnosed with EGPA back in November 22. I live in Buckinghamshire but attend Rheumatology in a London hospital where I work. After much research as this is all new to me I realised that I had to attend a Vasculitis clinic where the expertise is. I had my GP refer me to Cambridge Addenbrookes, Professor Jayne's clinic. I am still transitioning from my current hospital to Cambridge. I found his name via Vasculitis UK and Vasculitis Foundation US and through various other searches. There are other vasculitis clinics in London - Imperial and Guys but you would need to check this out. I hope this helps, With best wishes, Anne-Marie
Hi there. I am so sorry you seem to have been neglected despite some horrible symptons.
I started with Stoke Mandeville but they just treated me as a rheumatology patient. I was diagnosed with mpa in london where I heard of David Jayne at Addenbrookes, went there and have been relatively fine since on Rituximab.
Sometime back Dr/Prof Jayne said if i want to be nearer (Bucks Herts border) Prof Raaschid Luqmani is a vasculitis specialist he would recommend at Oxford University Hospitals NHS trust. Cant remember which precise hospital Im afraid. Personally even although I am relatively immobile I prefer to go to Addenbrookes, around 1 1/2 hours away as DJ is so good. if I became less mobile I might go to Prof Luqmani. It might be worth checking that Prof Luqmani is still seeing patients, and has not gone over full time to research. You have every right to be referred to the consultant of your choice.
There is something odd which I am just encountering. Addenbrookes are considering moving me onto othe drugs, but they say these (e.g.Adalinumab) can only be prescribed by a rheumatology dept, not a Vasculitis Dept. Their Rheumatology dept at Addenbrook's is not functioning at present so they have asked me to go to Stoke for the rheumatology aspect of my illness. they are bound by Nice guidelines. this sounds to me like a bit of NHS bureaucracy nonsense. Surely someone of Dr Jaynes calibre should be able to prescribe what he feels is right for my vasculitis? I have also heard from several practitioners that many Rheumatology Depts are really struggling at the moment. I only mention all this in case you have fallen into this quagmire and this explains the odd treatment/ consultants regime. I dont know if you are like me - I have got super-sensitive around my illness, but it may simply be this mess that is going on rather than any reaction to your previous coke habit. If you do think that is affecting the way doctors treat you, I dont see why you cant say very quietly and sweetly 'I know it cant be but sometimes I wonder if I am being discriminated against because I used to take cocaine'.
I would suggest you get into a good Vasculitis dept as I think only they will give you a medication that meets the severity of your illness. A lot of us on this forum had similar diffficulties until we got to a good V dept
If you can travel by public transport you may care to consider the Royal Free Hospital in north London. Prof. Alan Salama leads a team of three specialist vasculitis consultants. They are nephrologists, but deal with all types of vasculitis. Fast trains from Milton Keynes are every 10 mins. or so (never more than 20 mins. apart during daytime) taking 35 - 45 mins. to Euston. Then by Underground on the Northern line to Belsize Park (8 mins.) and 8-10 mins. walk from there. Alternatively a direct bus from Euston almost to the hospital door - Route 1 takes 20 mins.
Guy’s and St Thomas’ have a specialist vasculitis service in the lupus unit, led by Prof David D’Cruz. Prof D’Cruz is a rheumatologist, specialising in lupus and vasculitis. For the ENT side of vasculitis, he works with Prof Claire Hopkins. Outpatients are at Guy’s, which is right next to London Bridge station. I have seen both and am happy with my treatment. (Both also work privately though usually also have a private waiting list).
There are also other vasculitis specialist centres in London including Royal Free and Hammersmith (Imperial) that are also very well regarded.
If you contact the Vasculitis helpline via email or phone, they can give you the full list.
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