Hi I'm new to this but I got diagnosed with h.u.v.s in 2010 does anyone else have this if so how are you doing ?

[tmd74]

[RichardE Volunteer]

Hi and welcome !

I was also diagnosed with HUVS in 2010 and am doing pretty well thanks. I was prescribed Mycophenolate & steroids and reached remission after about a year. I've remained there since, slowly tapering off the steroids. I have a few residual heart & kidney problems but can't complain really

We know of a handful of other folk with HUVS here on HU and also over on the VUK FB page. We all seem to have fairly different problems so it's always interesting to hear from someone new with the disease.

If you don't mind, how has your HUVS affected you ? What treatment & drugs have you had (and are still taking) ? Are you in remission ?

Oh, and if you've not seen it, we have a page about HUVS on our website here :

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

All the best,

Richard.

[MichelleLee in reply to RichardE]

I have been very ill for 7yrs, and diagnosed with HUVS 2wks ago. Not sure what I'm doing or what to think. But love finding anything on it that isn't medical terms. I don't even have a question.

[RichardE Volunteer in reply to MichelleLee]

Hi Michelle. Sorry to hear that you've been ill for so long but hopefully now you have a diagnosis you will start getting the treatment you need to bring things under control.

The VUK website is a good resource for all things relating to vasculitis. If you don't want anything too medical then the "Living With" section here might be useful :

vasculitis.org.uk/living-wi...

Depending where you live there are various support groups around the country. You may not meet someone with HUVS but you'll certainly find many people who understand exactly what you're going through. If you're interested there is a list of local groups here :

vasculitis.org.uk/about/fin...

But I would encourage you to try and learn as much about the disease, the treatments, side effects of the drugs etc. It's been proven that if you do you are more likely to do better in the long term. It just makes it easier to talk to and understand your doctors and to take a little bit of control in the decisions that may need to be made in treating your disease.

All the best,

Richard.

[Sarahjh2004]

hi and like Richard said welcome.

I was diagnosed in 2011 but fell ill in 2010. There aren't many of us so its really nice to hear from you. I have the severe form and we are currently working on that

Where are you based?

I'm on about 13 different meds at the moment. Again like Richard said we all seem to present differently. I have the classic angiodeoma which has proven problematic. it would be interesting to hear what treatment you've had. Always niceto hear another side.

Good to have you on board

[tmd74]

Thanks to the both of you I too have a severe case I'm now taking Imuran 50mg a day I have been on steroids also im on about 10 different meds. It has affected pretty much my whole body my skin,eyes,all my joints,my kidneys,heart,I've had to have both knees replaced due to severe arthritis its affected my stomach I've been in remission almost a year but I suffer daily I have very bad anxiety from it just not knowing what its going to do to me I have to travel 3 hours from my home to the Dr because nobody has ever heard of h.u.v.s where I live Dr's look at me like I'm crazy when I tell them what I have but I'm so glad to talk to someone who shares this I thought I was all alone with it.

[kath12341]

Hi I was diagnosed with this back in the 60's when I was 6 then it had a different name I spent about 6 months on bed rest quite a time in hospital then the only treatment was penicillin and pain relief. i was not allowed out of bed as soon as i stood the blisters burst and my joints swelled. I had regular checks and after about eighteen months was okay. However I now have WG and wonder whether the huv was lying dormant and has manifested itself now as wg. I hope you soon see an improvement in your symptoms

[RichardE Volunteer in reply to kath12341]

Hi Kath,

I assume you were diagnosed with Mc Duffie Syndrome (as HUVS used to be known as) ?

But WG is quite different to HUVS and I doubt that one could change and become the other. What I suspect is more likely is that you were misdiagnosed originally. Unfortunately that's not uncommon with Vasculitis since the consultants see so few cases. But hopefully you now have an accurate diagnosis and your treatment is working.

All the best,

Richard.

[tmd74]

Hi Kath if you don't mind me asking what is wg ? And thanks for your info.

[RichardE Volunteer in reply to tmd74]

WG is short for Wegeners Granulomatosis or as it is now known, GPA - Granulomatosis with PolyAngiitis. GPA is a different and slightly more common form of Vasculitis compared to HUVS.

There's more information on the different types of Vasculitis on the VUK website here :

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

[kath12341 in reply to tmd74]

Hi it is wegners gramulotitis gpa I think is the latest name affects found mainly in eye ears nose but also lung kidneys heart liver so not much funi think when diagnosed aged 6 it was analphalacotoid purperua. When I mentioned this to my current rheum consultant he said oh yes HUV.

[RichardE Volunteer in reply to kath12341]

Hi Kath.

I think that anaphylactoid purpura is actually another name for Henoch Schönlein Purpura or HSP, not HUV.

That might make sense since you say that you were diagnosed at age 6. HSP is most commonly seen in children although is can also affect adults. GPA mainly affects adults but certainly can affect children. So this may be where the confusion over your diagnosis stems from.

You'd think that Vasculitis was complicated enough without having these confusing names

[Sarahjh2004]

hi again, I'm sorry didn't read your question properly.... below are my meds and treatment for the past 3 years.

meds...

mychophenolate

preds

ciclosprin

fexofenadine

ranitidine

procorolan

ramipril

indepimide

arvostatin

clonosporgel

anti biotics

vitamin d

adcal 3

alendronic acid

lanzarosaple

intra muscular injections of piriton

treatments...

rutiximab

methyl preds infusions

5 sessions of plasmatheris every 10 weeks

monthly omalizimab 300mg

future treatments...

bone marrow transplant

Like you I've been severely impacted and end up in A&E 2-3 times a week. once there my protocol asks for Iv steroids, iv piriton, iv ranitidine, which is repeated until the reaction starts to settle. Still smiling though.

As for the future..... not sure how that looks. like I said above, I have been asked to investigate bone marrow transplant... scary but possibly necessary...

I was rushed in last night so today will be a good day

I hope that may have answered some of your

questions.

Sarah

[tmd74]

Hello again I have a couple of questions what kind of Dr do you go to for those of you with h.u.v.s ? I've been seeing a immunenologiest since I got diagnosed and he was great and the only Dr that had ever heard of it around where I live but he moved back to his country so I now have to find another Dr. And I live in the United states do any of you know of anyone else having it here?

[tmd74]

Hi just wondering what type of Dr do any of you see for your h.u.v.s I have seen immunenologiest since I was diagnosed I'm in the United states and I traveled 4 hours to him he was the only Dr where I'm at that has ever heard and treated huvs but he has moved back to his country I'm kinda at a loss don't really know where to go from here because there is no Dr that has heard of it and don't know how to treat it any info would be appreciated thanks.

[MichelleLee]

Just diagnosed a few weeks. Trying to figure out hat to do with myself.