New diagnosis HUVS

[Sarah-38]

my daughter (17) has just been diagnosed with HUVS hypocomplementemic urticarial vasculitis syndrome. I’m still doing my research on this condition. Was just looking to see if anyone could offer some advice.

[Main1234]

If you look at a post from 7 days ago you will see some information. It may have been a post from a family member . Hope you get the information you need to move forward.

[zoe69 Moderator Volunteer Vasculitis UK]

HUVS is extremely rare. Therefore it is essential that your daughter is seen and monitored by a specialist. I don't have personal experience to share (I have another type of vasculitis), but here's a link with basic information:

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

[Juneelizabeth]

Hi Sarah How old is your daughter ? I am 71 but just under 50 years ago 6 mths after my first child was born I suddenly developed a painful raised red weals and lump rash which covered most by of my body and I felt very sick and was bed ridden

It was put down to ‘ allergy ‘ because then they did not know about Vasculitis and the role of the immune system

Throughout my life I had episodes of the rash and sickness which progressed to facial and neck swelling. It was only when I was in my 50s and had shoulder pain that any autoantibodies were tested

When I was given steroids for one Urticarial episode that it was like magic ( antihistamines had been pretty useless )

It is important your daughter has been diagnosed and with the rare HUV ( confirmed by compliment blood tests ) and I hope she has the care of an informed Consultant who has in depth knowledge of this disease

I noticed that stress and times of emotional distress could trigger an attack of the rash which is understandable

I would endorse contacting Vasculitis .org.U.K. For support and information they have helped me enormously

Good luck and hoping your daughter gets the care and support you both need

Best Wishes

June

[Sarah-38]

Hello thank you so much for replying. My daughter is 17 and has suffered with daily urticaria for the past for years. Her triggers are cold, wind rain burns her skin and she last summer developed purple/ red spots in the sun. She’s been on the highest amount of Fexofenadine For her age, tried numerous other tablets nothing controls it. She’s started to have them appear when sitting in the house. She has other health conditions asthma, focal cord dysfunction and pots. She suffers with a lot of joint pain and bone pain. Her memory is shocking and restating information is hard. She’s been under Adenbrookes for investigation and her bloods returned with a c1q antibodie of >400 her c3 and c4 are also low. So the specialist is saying that it all runs along side HUV. It’s been a huge relief to get a diagnosis but what now! She’s been taking Hydroxychloroquine She was on 200 mg a day with no affect her urticaria doctor yesterday increased it to 360 mg daily.

If you don’t mind me asking do you have triggers for your urticaria?

[Zampa47]

Hi Sarah, my daughter was diagnosed with this at 15 and is now 18 . What advice are you looking for? The vasculitus website is amazing. X

[Sarah-38 in reply to Zampa47]

Hi zampa. Thank you for your reply. I hope your daughter is doing well. Does your daughter have triggers for her urticaria rash ? And if you don’t mind what medication is she on?

Also does your daughter have other health conditions that have been brought on via the HUVS ?

Thank you so much again.

I’m just wanted to get as much knowledge as possible to support her in the best way possible.

Xx

[Sarah-38 in reply to Zampa47]

The vasculitis website is really helpful. But it so reassuring talking to others who are going through the same thing. At the moment she’s under Adenbrookes

Rheumatology bag guys for urticaria but feel she probably needs to be under a vasculitis specialist?

[artists in reply to Sarah-38]

It has also taken me 40 years to be diagnosed with HUVS . After many pain filled years l have started medication. The difference is amazing. I go to the royal free ,London . Things will improve significantly now that the illness has been identified, so good luck for happier days .

[Sarah-38 in reply to artists]

Hi artists. Glad you have now seen an improvement in your health. Do you mind me asking what medication you are on ?

[Blue_feather]

Hi, sorry to jump in on your thread Sarah, but some of what is being mentioned could help me, too. I was tested for a raft of autoimmune things about 18 months ago, and one of the tests ANCA, came back positive. My Rheumatologist wasn't concerned because the anca was neither P - anca nor B anca, so probably a false negative. However, he did say I have something like cold urticaria (I too get affected my the wind and rain, even on warm days an attack can be triggered by a gentle breeze.

Then 2 days ago my mum phoned me to tell me she's just had a diagnosis of anca related vasculitis.

I am now wondering if my cold urticaria isn't that at all. Any thoughts on this would be greatly appreciated.

[Sarah-38 in reply to Blue_feather]

Blue feather of course I don’t mind. So my Daughters sounds very similar to what your experiencing in regards to the urticaria. Her anca test came back negative. She was tested at guys for the temp test but this came back also negative, but Ice cube test positive. So they are saying hers is idiopathic urticaria. So not cold/solar 🤷‍♀️ But it makes sense now with the new diagnosis. I completely understand why you would be thinking along those lines maybe mention it to your specialist.

I hope you are coping well. I know first hand the effect this has on my daughter. It’s taken over her ability to do things freely.

Do you have other side effects?

Xx

[Sarah-38 in reply to Blue_feather]

Also my father so my daughters grandad has pr3 anca vasculitis. Seems if it is hereditary that it skipped a generation.

[artists]

I started on hydroxychoroquine and colchicine with fexofenadine for the itching. I didn’t think I would feel any better , but when l continued to get painful attacks fusions of rituximab were given . So much can be done .your daughter will feel so much better when the medication is sorted out. I am not going to think about all the years l tried to get diagnosed, I’m just enjoying feeling well .

[Sarah-38 in reply to artists]

Thank you so much ❤️ I’m so pleased your feeling like you have it under control ( there is hope) My dad’s currently having infusions for his vasculitis, they have helped him so much.

Good luck on your journey enjoying life xx