Hi,I was diagnosed with IGA Vasculitis mid -December. This was diagnosed after a hospital stay and kidney biopsy. Upon reflection I think I have had this for some time and am trying to piece everything together. Have started a 6 month treatment course in a bid to get it to remission stage at which point my kidney damage can be assessed and a further "kidney" plan be made then. I've been so ill, completely blind sided by this diagnosis and focused on the kidney issue I sort of lost sight of the fact that it's the IGA Vasculitis itself which may need more investigation. I'm under a renal consultant who is very good, but of course focuses on my kidneys. When I ask about other symptoms/concerns (my face, tongue etc) there doesn't seem to be a lot of guidance or knowns. As yet nobody has sat down with me to ask all my symptoms. I've seen on this board some people talk about Vascultis teams or specialists and wonder how I get one! I'm in Hampshire but obviously willing to travel if necessary. I just wonder if there's a service I'm missing out on or whether Vasculitis specialists are few and far between? Any help or direction would be greatly appreciated please as I'm feeling very rudderless. Many thanks.
Vasculitis Specialist Advice/Direction Please - Vasculitis UK
Vasculitis Specialist Advice/Direction Please
Most Vasculitis patients are treated by a Rheumatologist and you need one with the experience of Vasculitis. If you can't find one, try the Vasculitis.org.uk helpline. I haven't got the link but you should be able to find it on the site or come & join us on FB if you use it.
That's brilliant, thank you. I'll have a look.
I agree that you need to see someone who is knowledgeable about Vasculitis. The helpline number is 0300 365 0075 and the website vasculitis.org.uk/about-vas...
Thank you very much for replying. I'm beginning to build a picture now of who does what and the consultant you see depends on the type of Vasculitis you have. I just think that there may be crossover elements too which is why I wondered if there were specific Vasculitis consultants rather than renal, rheumatology etc. The website links are really helpful, thank you.
Daisy I have the same iga vasculitis I’ve had a kidney biopsy as well the specialist referred me to Rheumatology at the Luton and Dunstable Hospital who are sorting out treatment so far I have had a nerve biopsy as well. And 6 courses of chemotherapy plus 3 MRI scans i take quite a few tablets a day hope you find the right specialist in your area who can help take care Marc
Hi Marc, thank you for your reply. This is where I get confused - if you have IGA and you're seeing a rheumatology team why am I seeing a renal team? Is it just dependant on resources in the area? I have a little FOMO that there may be specific Vasculitis specialists based in areas around the country! I am happy with my renal consultant, but I don't have anyone to speak to about symptoms/concerns elsewhere in my body - when I ask about my fingers/face etc she says it maybe connected, or they don't know and I feel I may benefit from actually speaking to an IGA or Vasculitis specialist but I don't know how to get one!
Daisy my iga started with what I thought were red spots on my legs which turned out to be the small blood vessels bursting which is how I ended up at rheumatology they were in contact with the renal team discussing treatment
Ah, that's explains it. Thank you for sharing something so personal. I just couldn't get my head around why different patients saw either a rheumatologist or a renal consultant! I didn't have the "rash", rather just ended up in A&E with renal failure and am trying to piece together all my symptoms historically and the two flare ups I've had since. It's quite a lot to process and I don't think I've quite allowed myself to accept the enormity of it all yet and potential life changes. Thank you all for your replies.
Hi. I have large vessel vasculitis and began treatment locally but my local rheumatology team ran out of options when standard treatments didn’t work. I asked my GP to refer me to Imperial College London and now see a rheumatologist at the Hammersmith Hospital and am having excellent treatment. They run a renal service for vasculitis as well as a general rheumatology service. They have access to more resources being a large teaching hospital. I still see my local team annually. Hope this helps.
It does, thank you. I'm trying to understand the protocol and procedures and processes! That's brilliant you're receiving such care and treatment there. So I guess the answer if to press the GP for referral if you don't feel happy with local facilities or if treatment doesn't work as well as hoped. In short, don't give up pushing for help. Thank you for your reply- that's really helpful.
Hi, vasculitis specialists are either nephrology (kidney) or Rheumatology, depending on the hospital and specialist consultants at each. I switched from the Royal Free nephrology after 10 years and I’m now at Hammersmith hospital part of Imperial which is a major vasculitis research centre. Hammersmith treat small vessel vasculitis in their renal centre and large vessel in their rheumatology clinics, but they work closely together. The renal clinic also has an ENT consultant which is excellent. I’ve found the attitude at Hammersmith is to focus on all your symptoms and to listen to how you feel they are ultra supportive and a class above what I’d experienced before. And if you are on treatment you can access their rapid assessment unit for any issues 6 days a week, no messing around. Their clinics are Tuesday mornings and your GP can refer you to them. I have GPA which impacts my airways and joints, no kidney issues. Good luck, and I find it’s worth the travel to get the right care.
Totally agree. One Pompey supporter to another! PUP
Im going back to Fratton in a few weeks and so excited, used to be season tix in Fratton end b4 moving away. Miss it so much!!
Wow, that sounds amazing. So pleased you have somewhere so comprehensive and supportive to go. I didn't understand my GP could do a referral like that - I got "allocared" a renal consultant because I ended up in hospital with renal failure and then was diagnosed with IGA Vasculitis after a biopsy, so I never had a referral initially. I'm happy with my renal consultant but I'm not convinced I'm being fully looked at as nobody has asked me about all my symptoms yet...I think I may need to speak to my GP again to see if I can add someone else into the mix. Really appreciate you taking the time to reply and help clarify the process.
Hi, yes NHS has great option that you can choose any hospital and any consultant and your GP will do the referral. So well worth hunting around. It might help speed things up if you contact the consultants NHS secretary to get the right referral codes for your GP as this helps to avoid delays. All the best.
Wow, I had no idea that was even a thing! OK, looks like I need to do some research and admin. When I get the energy. ..thank you so much for your direction.
As Pompey9 says specialist centres are made up of nephrologists and rheumatologists. I go to the specialist centre at addenbrookes. I also see a respiratory doctor and an immunologist who sort my care between them. I swooped my care from my local hospital as I wasn’t happy with my treatment. I had to ask my GP to refer me to addenbrookes. The helpline should be able to help you find your nearest specialist centre. Good luck with your ongoing treatment.
Thank you so much for replying. It is so helpful. I've learnt more this morning from you all than in the last 3 months from everywhere else! I will call the helpline shortly.
I was treated by a specialist Vasculitis consultant at Edinburgh University's Vasculitis and Lupus unit within the Renal speciality. I was wheeled into hospital and eventually diagnosed. I have had two kidney biopsies and several immunosuppressant infusions. My kidney function is now comparable for my age and gender. I am now in remission and finished infusions. I had stiff joints, blood blisters everywhere, and conjunctive eyeties, even my Reynard's appears to have cleared. My sinuses aren't great but they weren't before. I am now a few meds to maintain both long term remission and general health. Looking at my Fitbit's resting heart rate, I could see that there were issues 2-3 months before it all went wrong. My urine also turned bright orange before I became really ill.
Personally I think it is a bit of postcode lottery. My impression is that some rheumatologists basically appear to do what they have always done rather than moving to the latest treatments which I am pleased to say the Vasculitis/Renal team at Edinburgh were really progressive, and aware of the latest research and advances in care.
Since recovering I have managed to cycle over 10000 kms and can run about 16km. I would attribute my current good health to a combination of the efforts of team, combined with my own lifestyle and diet which is high in fresh fruit and vegetables.
Thank you so much for your reply. That's fantastic that you have made such positive progress. These replies have all been so helpful and I'm very thankful to you all for taking the time.
hi Daisyboodle I have/had IGA vasculitis, previously called Henoch Schonlein Purpura (HSP - please excuse the spelling!). I have had 2 significant attacks, one in 2002 and one in 2016. Both had renal involvement, but also had the “purpura” rash on my legs to start, which then spread to my arms and also internally where I had stomach involvement; chronic indigestion were the symptoms. First time I just had rest and all cleared up ok. Second time I initially had high dose pred, but then needed an IV methlypred (500mg). I was told I may need up to 3 of those but only had 1 in the end. I was then on high dose pred 60mg and started on azathiaprin; you have to have an enzyme test for this drug. I did have another flare whist starting the Aza, and was offered cyclophosphamide, I chose to stick with Aza after taking advice. My treatment was all led by my renal consultant, but I asked to be referred to rheumatology due to the wider body involvement. Luckily I am in remission now and pred and Aza free, but do have joint pains, blood I my urine, suspected stage 2 kidney disease…! The vasculitis uk sure offers great information and advice. Good luck finding the right treatment.
Thank you so much for your reply. That now all makes sense yo me, I'm starting to join up all the bits for myself and I believe there is wider body involvement for me too. I hadn't appreciated we could ask for other/additional consultants- I think I just was so grateful to be in hospital I took what I was assigned with, but since a further two hospitalizations since, and a feeling of not knowing how to proceed, I now understand I can ask for more people to be involved. Am pleased you are in remission now. Thank you for taking the time to reply- I've learnt so much today!
Hello Daisyboodle, I'm sorry you've been so ill. It sounds like you might have slipped through the net. When I was first ill with GPA, it took ages before the gp decided I was ill enough to see a rheumatologist. That was the beginning of some treatment. My problem was that some issues, asceptic meningitis, bell's palsy, tracheal stenosis, were beyond the circle of knowledge of my rheumatologist. I went onto the pc and looked for centres where there were multi disciplinary clinics for my vasculitis. I found Addenbrookes, which was a bit of a way from where i live.....they were brilliant and made me well again. I think you need to start sending some emails to some bigger hospitals near you, AND say how and why you're worried to your consultant. Tell him you want a referral to a multidisciplinary team who can look after you completely. I eventually told my first consultant that I needed to be referred......he was a bit terse, but he HAD to do it. It's your choice. You're allowed to do this...have second opinions. Good luck to you on your journey.....onwards and upwards!
Thank you so much for your reply. I'm starting to understand the system a little and how much I need to be my own advocate rather than be passive! I hadn't understood what we were or weren't allowed to do or how the system worked. On the strength of all these fantastic replies I've contacted Vasculitis.org who gave me the name of a consultant they've just added to the list at my local hospital. I've just rung my GP and asked to be referred to them. I'll take this as my starting point but you've all shown me not to be complacent and to keep pushing and if I don't feel I'm getting a rounded service it's OK to ask to go elsewhere/find somewhere or someone else and then push for a referral. All your advice has been invaluable- thank you. It's just a bit rum that on top of this new illness and all the ramifications we also have to try to learn how the system works and how not to get lost in it! When perhaps we're not at out strongest to deal with this.
You're absolutely right....also, don't forget we've all been there...getting nowhere until someone who's on the journey shares some advice. Good luck to you...I hope everything goes well.
Thank you.
Hello, I was thinking of moving to your area and looked at where I could continue my treatment for Vasculitis. I see rheumatology (rituximab infusions) and the eye clinic regularly for GP Anca. I’m sure I saw the necessary departments at the hospital in Southampton. Hope you find the right place to carry on your treatment journey
Thank you so much for your comment. I've learnt a lot since my first post! Hopefully my GP will refer me successfully, but I will chase and make sure I'm in the "right" departments rather than just being allocated one that maybe doesn't cover everything. It's been quite the learning curve!
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