is anyone else having problems seeing a Rheumatologist? I last saw one well over a year ago who told me I was wasting her time as she had more important patients to see. Guess arthritis is more important than GPA as more people suffer from it.
I have a GP who is not interested in my condition so really I’m left with no one to talk to about my health. I’m trying to manage it myself! Most days I feel unwell but make myself get up and do things as a form of distraction therapy, it would just be good to talk to a medical professional who understands.
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valwood
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That is awful-you are entitled to support with your condition. Because it is a rare disorder, many medical people are totally unaware. I would suggest contacting
They are a fantastic organisation who have helped me and have many people who will understand and be able to point you in the right direction. Good Luck and stay strong.
I was diagnosed with Vasculitis GPA 14 months ago and was assigned a Rheumatologist on the day who has remained with me ever since. I was seeing her monthly but now every 3 months which is about right as I’m in remission but still suffering from numerous side effects. I can contact her secretary any time for advice if needed.
I was also referred to Addenbrooke’s specialist Vasculitis unit which was fantastic and gave great advice and support for me. Not sure where you live but suggest you push for a referral to Addenbrooke’s if it is practical for you? I understand that some of the London hospitals also have specialist Vasculitis units.
From my own experience, GPs are not equipped to deal with this complex disease so you will be wasting your time there and really need specialists to support you. I would suggest pushing your GP to refer you to one of these specialist units - at the end of the day it would only need a short referral letter from them to get you off their back.
hi I had a very similar experience post covid and so I got my GP to refer me to a different hospital/consultant. You can choose anywhere in England on the NHS it’s not dependent on where you live or where your GP is.
In London nephrology rather than rheumatology tend to look after GPA patients - I’m now at Imperial Hammersmith hospital which is a huge GPA research centre. The clinic has ENT as well as nephrology consultants and if you need rheumatology they coordinate that too. Massive step up in care compared to my previous lot and they take fatigue etc super seriously I can’t recommend them highly enough and for me well worth travelling to get good care.
First of all I would change your GP if possible - Vasculitis is a rare condition and needs careful management … Also talk to the people at Vasculitis.org.uk very helpful … good luck !
I agree with most of the comments on here. Call the helpline to find a specialist centre convenient for you and then ask your GP to refer you. If he doesn’t insist he refers you. I asked for a referral to addenbrookes years ago and received much better care. Sadly I don’t think they are taking anyone else on at the moment. I know it difficult when you’re feeling so lousy but it will be worth it.
I hope you get the referral sorted out and then get better care at Addenbrookes. I changed hospitals whilst not on any treatment or in crisis , imo it’s best time to move. I wish you all the best.
You have my sympathies. I used to have a brilliant group of specialists looking after me but since my main specialist retired and wasn't replaced, I am feeling like you that I have no one to talk to who understands and can answer my questions. I was then taken off my other specialist's patient list with no explanation. I do have doctors who sympathize so I'm lucky in that respect, but its peace of mind too that if I deteriorate I want to know someone will know what's going on.
You've had some really good advice here, I would change Gps if you can.
I really hope you can get referred to a specialist who understands and can help.
There doesn’t seem to be much hope. I’m same as you brilliant care until my Rheumatologist and GP retired pre Covid and nothing worth mentioning since.
You mention GPA in your post. Have you been diagnosed yet? Just curious how you know you might have it. If you have been DX in the past and are having a flare then it's important to see someone soon. It's frustrating that some doctors don't take you seriously.
Sadly there is a National shortage of rheumatologists and what makes this worse for patients diagnosed with vasculitis is that not all rheumatologists have an interest in vasculitis.
Sadly there are over 7,000 rare diseases out there and. GP cannot possibly have knowledge of them in all detail. A GP will possibly only come across 2/3 cases of vasculitis in their whole working career. BUT a good GP should investigate further reoccurring symptoms that won’t go away/unexplainable symptoms etc. A good GP should also be as supportive to patients who have a diagnosis of vasculitis. Having said this, there also seems to be a National shortage of GPs.
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Does anyone have experience of a rash ( and some swelling) on their ankle?
"It's only bits mum" 
Cannabis & Vasculiti
Do I Need to be referred back to a Rheumatologist?
