Urticarial Vasculitis Overview

In this webinar, Dr. Pavel Kolkhir gives an overview of Urticarial Vasculitis (UV). He is joined by two patients with UV who talk about their experince managing this rare form of vasculitis.

Topic Time Stamp
Welcome and Introductions 0:11
Key facts about UV. 1:48
Skin symptoms of urticarial vasculitis. 3:09
Systemic symptoms of urticarial vasculitis. 4:07
Possible triggers of UV. 4:36
Classification of UV based on complement. 6:27
The challenge of diagnosing urticarial vasculitis. 7:47
Treatment based on individual needs. 9:06
Outlook. 10:18
UCare Network: Urticaria Centers of Reference and Excellence. 11:14
Current studies into UV. 11:48
Elise's story about her UV. 13:15
Arturo's story about UV. 21:41
Q&A: What is the difference between Urticaria and Urticarial vasculitis. 33:04
Q&A: Is UV a subset or type of lupus disease? 34:09
Q&A: Does UV has characteristics of other autoimmune diseases? 35:56
Q&A: Can you comment on the difference between Primary Immune Deficiency and UV? 37:10
Q&A: Does Normocomplementemic Urticarial Vasculitis cause hair loss? 39:58
Q&A: Does Physical Urticarial Vasculitis accompany Normocomplementemic UV? 41:17
Q&A: Why does the skin become so sensitive during a flare with urticarial vasculitis? 41:44
Q&A: How common is it for a patient with UV to be diagnosed with another type of vasculitis? 42:32
Q&A: Are you able to look a patient's rash and determine if UV is involved? 44:30
Q&A: Will my rash or lesions become permanent? 46:26
Q&A: Which type of UV is most prevelant? Normocomplementemic or Hypocomplementemic UV? 47:42
Q&A: Can there be impact from heat or cold when you have UV? 50:14
Q&A: How important is it to have a dermatologist as part of my patient care team? 52:08
Q&A: My UV is in remission, but I'm worried that getting the COVID vaccine could trigger a flare. What are your thoughts? 53:18

Recorded February 2022

[andytalbot]

Thanks so much for this video. I’ve just been diagnosed with this condition and it’s quite concerning. To know that there are people working hard to establish cures and treatment is encouraging. Good luck to all of those who are suffering from this condition.

[gretchengrounds]

April 12th I had my first wheal. I find out my biopsy result in 2 weeks. I went to ER from face swelling. I’ve seen an allergist, dermatologist and the rheumatologist. I’m so anxious to be more physically active and not fear being diagnosed by random strangers in public. I relate to both of these stories. Thank you for sharing.

[YesThatPrettyGirL]

26:40 WHOA! I can't believe what I'm hearing as far as the similarities of my disorder. I thought I was crazy. My clothes leave a mark on me that has HORRIFIC consequences. My SOCKS leave their mark that turns into wheals that start our as little "c's" that either cotinue into making a complete circle and turns into MONSTERS.
Every single word you said about ur daughters' symptoms and experience.
THANK YOU so much for sharing both of ur stories!
All of my best for you ❤

I thought I'd also mention my rheumatologist is doing labs to look for dermatomyocitis. 🤔

[SudhanshuSaxenajaipur]

very useful information about the UV....Thanks for this !! Patients loose lot of time without proper treatment before it gets diagnose !!

[marpz.]

I was born with urticarial vasculitis and im so glad theres a video on it. I can never find any information on my skin condition .

[Lolaaestereo]

Thank you for this video I have been dealing with this problem for years

[gloriagold]

I’ve had what my cardio/vein specialist has diagnosed as Vasculitis for 2 & 1/2 years. Mine is localized in the lower inside calf. Hasn’t traveled at all or gotten bigger. I’ve had varicose veins for about 30 years. My doctors have led me to believe it’s part of the complications of V.V. However, the last V.V. procedure I had, didn’t seem to do anything to help. So, I put off the next procedure and was considering getting a connector vein finally ablated, like he’s been wanting to do, to hopefully cure this red, hard, burning patch. This past week, I’ve rubbed on diclofenac cream, that I had for arthritic knees, and it has seemed to normalize the skin color and texture! I’m going to keep using it, and hopefully give you an update in another week. However, mine sounds lots different than anyone else’s here, so I wouldn’t recommend it to anyone of you. Consult your doctor, first.

[martafabian]

OMG, I wish I had seen this video months ago! I wasn’t diagnosed until very recently, after seeing my family doctor, two dermatologists, an allergist, and an internist.
My doctors tried two weeks of Prednisone and five different antihistamines. Nothing helped.
In a nutshell, I’ve been suffering all summer, as the hives and accompanying weakness and brain fog have wrecked the three best months in a Canadian year!
I have a couple of suggestions that have helped me:
Colloidal oatmeal. Use in a lukewarm bath every morning for about 30 minutes. It helps soothe the hives.
After your bath, put some lotion ( e.g. Aveeno skin repair) while your skin is still damp, then apply ICE GEL. A pharmacist recommended it and it cools the areas affected, making your day more bearable.
I am on my second dose of Xolair. Paying out of pocket (CA$1040 each) as my insurance has chosen not to approve it.
Good luck! I feel your pain and pray that you find a cure and get better!🙏🏻

[gloriagold]

I’ve had what my cardio/vein specialist has diagnosed as Vasculitis for 2 & 1/2 years. Mine is localized in the lower inside calf. Hasn’t traveled at all or gotten bigger. I’ve had varicose veins for about 30 years. My doctors have led me to believe it’s part of the complications of V.V. However, the last V.V. procedure I had, didn’t seem to do anything to help. So, I put off the next procedure and was considering getting a connector vein finally ablated, like he’s been wanting to do, to hopefully cure this red, hard, burning patch. This past week, I’ve rubbed on diclofenac cream, that I had for arthritic knees, and it has seemed to normalize the skin color and texture! I’m going to keep using it, and hopefully give you an update in another week, if I can get back on this thread. However, mine sounds lots different than anyone else’s here, so I wouldn’t recommend it to anyone of you. Consult your doctor, first.

[liz_evan]

Thank u so much for sharing. I have been diagnosed with chronic urticarial vasculitis today

[nadiahill]

very good doctor, thank you for this video

[allinoneBharatW]

I am writing to you today as a patient who has been suffering from urticaria and has been experiencing some concerning symptoms that I would like to discuss with you. From two year straight, I have noticed that in addition to my hives, I have been experiencing some other symptoms that may indicate the presence of lupus erythematosus. While these symptoms are still mild, they are causing me a great deal of concern and I would like to get your professional opinion on what may be going on.

In addition to the lupus erythematosus symptoms, I have also been experiencing significant abdominal pain when my hives are particularly severe. This pain is sharp and intense and it is beginning to impact my quality of life. I have tried over-the-counter pain relief medication, but it does not seem to provide any lasting relief.

I am writing to you today to request an appointment to discuss these symptoms in more detail. I am hoping that you can help me determine the root cause of my symptoms and recommend an appropriate treatment plan. I understand that my condition may require additional testing or referral to a specialist, and I am willing to undergo any necessary procedures to get to the bottom of my health concerns.

Thank you for taking the time to read my letter, and I look forward to hearing from you soon.

[Mayllee]

Thank you for this video. I was diagnosed with Normocomplementemic UV a couple months ago (with giant urticaria). I've tried 4x dose of H2, colchicine, Dapsone with prednisone 50 mg downwards for 12 days and nothing works. I'm now only on prednisone 25 mg for 10 days while awaiting my insurance approval for Xolair 300 mg. I really hope this will help. In my case, the biggest struggle is professional, or should I say, financial. I can't work because of the fatigue and intense brain fog. I became unreliable at work since I have an average of 1 big flare up per week, which keeps me motionless for 48 hours at a time.

[JennVanMassenhoven]

I have had 'hives' since December. Just saw a doc at the Allergy and Immunology Clinic in London, Ont, Canada. She says it's not an allergic reaction, it's probably vasculitis, but is awaiting biopsy results. I am almost 50, and I live with a severe chronic pain condition. Could the pain condition be affecting my skin?

[rhondacaywood]

Is it possible to have cutaneous vasculitis and urticarial vasculitis at the same time? My daughter has both petechaie and wheals, no one has determined the underlying casue.

[Tdtsnowflake]

I have been diagnosed with UV last week.I was given hydroxychloroquine as a treatment.but I refuse to take them.I fear these drugs having a negative affect.am I doing harm to my body.what are my risks of not following the doctors treatment?and is there a more nature path to treat UV ?thank you!

[blackhawk]

Can a Recurrent Iritis episode be in any way connected to this condition?

[YesThatPrettyGirL]

A cream called AMMONIUM LACTATE 12% has been a GAME CHANGER for me with regards to the level of itchiness and burning, This lotion helps to soothe. HEADS UP: If you are like myself, and the female patient participating in this webinar, I have SEVERE rashes from head to toe so I require A LOT of lotion every time I use it, which is quite often. Much love and appreciation for you all!

[dannyeichelberger]

i was diagnosed with this many years ago and its extremely hard to treat, at least for me i have tried many Immunosuppressant drugs and biologics with mediocre results. He is right quality of life is not good and we suffer. i have been at mayo clinic for the last two years and still have a hard time finding any kind of relief.

[sripriya]

Hello doctors.. Am from India.. I also affected with urtecarial Vasculities from 2020 february onwards. I went so many hospital and also started to take steroids. After I have taken biopsy in that uv was confirmed.. Till now am taking prednisone steroid. Am 25 yrs old. Newly married also.. How can I et rid of this uv.. Any suggestion please help.. I was very worried about my future. Whether I can able to give baby to my husband. Please pour some suggestions.