What's the difference between HUV and HUVS ?

[RichardE]

I'm not sure if anyone else on here is diagnosed with Hypocomplementemic Urticarial Vasculitis but having just discovered this link : flashcardmachine.com/jjsa-v... I see that there's a distinction between HUV and HUV Syndrome so I wondered if anyone else knew this or had any more info ?

Cheers, Richard.

[RichardE Volunteer]

In case anyone picks up on this question in future and is interested, here are a couple of links that help explain the difference. But in brief, HUVS is rarer, more severe and is systemic in nature potentially causing damage to various organs.

vasculitis.org.uk/about-vas...

ncbi.nlm.nih.gov/pmc/articl...

[barneyboy]

Hi Richard

Thank you for this - I never knew this before. My husband has huvs rather than huv. Like you he has had a heart attack, but his main problems are extreme breathing difficulties. Have you had any problems with breathing?

I've also seen some of your comments regarding your heart. At night Mark's heart races and his body becomes boiling hot. Do you suffer in this way? No-one seems to know why this happens to him.....

[RichardE Volunteer in reply to barneyboy]

Interesting that your husband has heart problems too, I know at least one other HUVS patient who also has heart issues.

I did have some breathing difficulties (wheezing) when I was flaring but they never got very severe. I think whilst they were investigating they did detect some lung damage but luckily so far it hasn't really caused me any trouble. But I understand that breathing problems are fairly common with HUVS. Again I know of another sufferer with a severe anaphylactic like reaction that causes breathing problems.

I do occaisionally get night sweats but I've always put that down to side effects from either the steroids or the Mycophenolate immunosuppressant that I take. Maybe that's not the case.

Regarding the racing heart. You might want to push your husband's cardiologist just to check that out to put your mind at rest.

Since my heart attack I've had quite a few episodes of Supra Ventricular Tachycardia (SVT) which is basically palpitations that don't stop on their own. The remedy is a trip to A&E and an injection. And recently I've also had what seem to be SVTs but have stopped on their own after about 15 minutes or so.

To investigate this I've had a couple of 24 hour ECGs where they wire you up and send you home to monitor your heartrate during your daily routine. That has shown that my heart rate goes a bit low at night and that I regularly get ectopic (extra) heartbeats. I don't notice these most of the time but when I first get into bed I do feel "a bit odd" - sorry, it's hard to describe But the 24 hour ECG confirmed that I was experiencing ectopics at the time. So it might be worth asking your cardiologist if you could have one of these done to check out the racing heart.

Sorry to ramble on but I hope this helps in some way.

All the best,

Richard.

[barneyboy in reply to RichardE]

Thanks Richard

It is interesting how this disease affects people in different ways. It was Mark's kidney's which were first affected and his renal specialist diagnosed the HUVS. He then had a heart attack, afterwards caught a chest infection and his lungs have gone downhill ever since.

Thanks for your advice and take care....