Newbie

[Jokelby72]

Hi I'm new on here, I was diagnosed with hypocomplementemic urticarial vasculitus a few weeks ago. I also have many symptoms of SLE. My rheumatologist told me that the HUV is also a type of lupus, does anyone else on here have it?

[RichardE Volunteer]

Hi,

Welcome to the group, although sorry you have to be here. I have HUVS too and there are a few others on the group. We're not as rare as we once were

I believe that HUVS is definitely a type of vasculitis but some rheumatologists argue the toss over whether it's a type of lupus. The two diseases have a number of similarities though and I think it can be tricky to differentiate.

If you've not seen it, there's a bit on the VUK website here :

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

There's also quite a good medical article here that has a couple of tables describing some of the differences between HUVS and SLE (lupus) :

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

All of us with HUVS seem to have different problems but I'm sure someone will be able to help if you have any questions.

All the best,

Richard.

[Jokelby72 in reply to RichardE]

Hi, Thankyou I will look at the links. I think mine is HUV not HUVS unless they are both the same thing? Yes my rheumatologist seems to think it is a type of lupus but I know not all do. 🙂

[RichardE Volunteer in reply to Jokelby72]

You're welcome.

I"ve replied on your LupusUK post too but there is a difference depending on the severity. Although I think it's a fairly poorly understood disease with a degree of variance in diagnostic criteria.

[Cvansidener]

Aloha I also have HUV Lupus, it is a very frustrating disease. I live in Hawaii in the US, but found this site when I was first looking for answers. So I send my prayers to you. I control my disease by reduced stress, as much as possible, Healthy eating and I take Plaquinil and Doxycycline daily. It has kept me from having flares for the most part although my ANA blood test are still high. I am back at work and don't have welts all over my body, so it is working! Hope this helps!

[Jokelby72 in reply to Cvansidener]

Thankyou for taking the time to reply. Hawaii? You lucky thing! I will try the healthy eating and reduced stress, Thankyou.

[Sarahjh2004]

Hi

I have HUVs. I think the difference is the angiodoema associated with HUVs. 

Like Richard said it is complex and often falls over with SLE because if the anti c1q antibody which is found in both diseases. There are a couple of us around but we do all present very differently.

I have found lots of support through the VUK support page and particularly Richard.

I'm very lucky to have a rheumatologist who has treated HUVs before so is open to all treatments because of his experience.

Where are you based? 

If you have any questions I'm sure between us we can help.

[Jokelby72 in reply to Sarahjh2004]

Hi, I don't have the same as you I have huv, yours is the rarest form I believe. Like you I'm finding a lot of help in this group, it's great. I'm based in north London 

[pickle]

Hi, sorry you have to be here! I also have HUV but not Lupus. If you have any questions happy to answer them if I can! Lucy 

[Jokelby72 in reply to pickle]

Hi, thanks. I smiled when I saw your name, I call my other half pickle lol

[Winter64]

Hi I have HUV no S lol. I had weak positive ANA at the beginning 10 years ago but lupus has never been discussed. The meds are roughly the same so I don't worry too much. I take 100mg dapsone, 300mg Doxepin, 180mg fexofenadine, ad cal and 2000mg tranexamic acid (for the Angioedema). When I'm not depressed.     ( large dose Doxepin covers anti histamine anti depressant and pain relief all in one go) I take additional fexofenadine so it's 360mg and hydroxyzine added in.

Since adding in the dapsone in 2011 my wheals for the most part behave themselves but if I'm late taking my meds they start popping up all over the place! 

Have your Vit D calcium and B12 checked too because all are often low in auto immune conditions.  

There is a Facebook page too for VUK if you want to catch even more people. It's a closed group so no one on your friends list can see what you put 

Karen xxxxx

[Jokelby72 in reply to Winter64]

Hi I'm on fexofenadine. I have 30/500mg cocodamol and amitriptyline for pain because I have lipoedema. Seeing the rheumatologist again next month so I'm hoping they'll come up with a plan. I'm not sure what they've tested for so far but I will ask for all those tests. Thankyou x

[AndrewT]

In answer to your question Jokelby, I don't have a clue-hopeless aren't I?  Welcome anyway.

Best wishes

AndrewT

[Jokelby72 in reply to AndrewT]

Hi Andrew, no worries 😂

Thankyou for the welcome 😖