I have been diagnosed with HUVS for a short time but had the illness without diagnosis for many years . I have not met anyone with this illness . I have tried to read up on it but I can’t seem to find even simple answers , can anyone tell me if this comes under pans and what is pans ? My bloods have always been clear until I had test for anti CIq and biopsies both positive . Although l am not very ill I am constantly ill with lots of flares . I take colchicine and hydroxychloroquine do l try to live with this constant pain or take more drugs and hope to improve ? I’m worried about all the drug side effects . Anyone out there with this kind of vasculitis , there seems so many different symptoms l don’t know which is worse . Despite all that l am well and cheerful except when I’m not .
Pan or not : I have been diagnosed with HUVS... - Vasculitis UK
Pan or not
Are these any help?
Hi. Yes I was diagnosed with PAN in 2016. I’ve been on 80 mg of Prednisone when I was first diagnosed and now I’m down to 10 mg. I’ve also had 7 treatments of Cytoxan infusion in 2016/2017 and Rituxan 2018. I had a wedge biopsy completed for diagnosis and multiple blood tests to rule out the type of PAN. PAN affected my peripheral nervous system so I have neuropathy and at the beginning I was starting to get foot drop and had to use cane and walker and I was 40 at the time. I also have red tender nodules that appear on the skin hence the name Polyarteritis Nodosa. You may need another treatment to put your Vasculitis in remission. Do you see a Rheumatologist?
Here’s a link:
vasculitisfoundation.org/ed...
Thank you this looks a lot easier to understand . I go to hospital next month so l will ask more questions. I didn’t ask anything last time as it was so new .
You’re welcome. They can also test your inflammatory markers CRP and Sed rate. I’ve never received full remission but I’m much better. I’ve tried the two infusion drugs; methotrexate (oral first and then injection); aziothioprone (Imuran) but had episodes of vomiting after an hour of taking it which didn’t start until a few months in; Prednisone and Cellcept are my current meds. Best wishes to you
Hi. I’ve had HUVS for about 10 years now.
HUVS and Polyarteritis Nodosa are very different types of vasculitis. Vasculitis is generally defined by the size of blood vessels that are affected. HUVS affects mainly the small blood vessels and PAN mainly affects medium sized vessels. As far as I’m aware, HUVS is also the only type of vasculitis in which the anti C1q antibodies play a role. The urticarial rash is another significant symptom although there can be many more symptoms that are common across the different types of vasculitis.
Vasculitis UK has a page that covers HUVS (as well as other types of the disease) here :
vasculitis.org.uk/about-vas...
There are also some more links at the end of that page to other medical papers with more specific information.
I believe that colchicine and hydroxychloroquine are a milder form of treatment for the disease. Everyone’s vasculitis is different and so treatments often need to be tailored to what is appropriate for their disease rather than a one size fits all treatment. But if your current treatment is not being effective there are more powerful drugs that may need to be used. Ask your consultant if you are concerned.
Versus Arthritis have some great resources that explain about the drugs we are prescribed. The British Association of Dermatologists also have some details. Have a look at these for the ones you mention :
versusarthritis.org/about-a...
bad.org.uk/for-the-public/p...
Hope this is useful. All the best,
Richard.
I also have HUVS. I first developed symptoms in 1996, but I did not get diagnosed until 2005. I get a variety of symptoms, from mild to severe. Some symptoms are hard to explain even to my doctors. It’s a very difficult disease to treat because it is so rare. Most of the time, I just do not feel good. The same medications may not work for everyone. I have tried different meds and right now I take colchicine, azathioprine and rituximab. I am on prednisone eye drops for uveitis. Also take oral prednisone as needed. Most people think there is nothing wrong with you because you look well. It can be depressing and tiresome
Lpiper
PAN
Do other vasculitis people get nausea, not from the meds?
Central Retinal Arterial Occlusion
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Moving on, how?
