HUVS question

[barneyboy]

My husband was diagnosed with HUVS about 4 years ago, To date he has only ever seen a renal consultant and a respiratory consultant for the effects it has had on his kidneys and lungs. I note that from this website that people with HUVS are seeing a rheumatoligist. Just wondering people's thoughts on whether my husband should be seeing one and how I could get this arranged. Pressure our GP maybe who to date has been very useless??

[RichardE Volunteer]

Hi, I was diagnosed with HUV about three years ago and am under the care of a Rheumatologist.

By and large I think it's true to say that it often depends on what department takes an interest and diagnoses you. And this will probably depend on how the disease manifests itself. For me, I did have some kidney and lung involvement but it was relatively mild so I've only occasionally needed to see Nephrologists and Respirologists.

But we've just made contact with a lady in Northern Ireleand with HUV who has had much more extensive kidney problems who I suspect primarily sees a Nephrologist.

I think there's an old survey on HU that shows that it's about a 50:50 split between Rheumatology and Renal with a few people seeing Immunologists and Dermatologists too.

Anyway, if your husband is also having problems that relate more to joint or muscle pain for example then I imagine it might be useful to see a rheumatologist. I think either your GP or existing consultant should refer you if you explained your concerns.

But if you're more worried that the treatment he's getting for the kidney and lung problems is not working then I think you may have a bigger issue. It may be that you'd be better getting a referal to someone who specialises in Vasculitis. Depending on where you live there are certainly specialists in Cambridge, Birmingham, Manchester and Aberdeen and possibly elsewhere that John or Susan Mills would be able to sugggest if you wanted.

Finally, I imagine you're already aware that HUV is one of the more rare Vasculitides, but here in Vasculitis UK we have a happy band of four HUVers that would be glad to welcome a fifth member along to support and share with. So do please ask any questions either here or on the VUK facebook page and I'm sure one of us will pitch in if we can help.

All the best,

Richard.

[LynneJ Vasculitis UK Volunteer]

Hello

I do know that a lot of people are seen by Renal departments. I think as long as he is getting the right treatment it wouldn't matter which one

.

However if you are not satisfied you are entitled to ask for referral to a specialist hospital. If you message John and Susan, John will be able to tell you how to go about it. I think you get your own GP to write a letter.

In the mean time have you looked at the Vasculitis UK website? It gives you a lot of information on types,diagnosis, treatments and much more. vasculitis.org.uk

If you feel your GP doesn't understand you might suggest he looks at it as well. I did and got much better treatment after. I have also given the Routemap to our surgery and they were very pleased and are going to use it in training. As Vasculitis is so rare many GP's have not seen a case before.

I have MPA so do not know a lot about HUVS but I am sure you will get an answer from someone with more experience soon.

Good Luck

Lynne