Chronic Urticaria or Urticarial Vasculitis

[Shannonkate93]

Hello! I’m am just interested to see if anyone was diagnosed with idiopathic chronic urticaria but it turned out to be urticaria vasculitis?

I was diagnosed with urticaria at 12, and since then have had 3 flare ups that each last a year or two. On my third flare now an it’s showing no signs of going almost 2 years on. All the standard urticaria treatments seems to have no effect, I can have good days and bad days and the medication does not seem to influence this. I get horrendous bruising, the hives can be deep red / purple and like rings with a white centre. My joins can hurt, I get chest pains and stomach pains. These have happened with every flare but I had no idea about urticarial vasculitis until having a desperate research last night about the bruising I’m getting. So long story short, can anyone give me any advise on here? Have you been misdiagnosed before? I will speak to my consultant on my phone appointment next week but I’d like to hear others experiences also. Desperate for help now! Been struggling too long, I am finally due the omalizumab injection next week so I am hoping this helps now matter what condition I may have. Thank you ☺️

[Paprika60]

Hello, I have Hypocomplementaemic Urticarial Vasculitis. It is very rare even in vasculitis group. I have only come across a few on this forum. I know what you are going through. I am in semi remission with hives and joint pain/swelling but now I have developed lupus (as HUVS is very close to Lupus) and Sjogren syndrome. I had never had Omalizumab but just read about it and it may work for you. Wait until you get it and see how you get on. The only thing that worked for me is IVIG annually but NHS doesn't give it more often if possible as it is very costly. What medication are you on and for how long? If this doesn't work and you are given nothing but steroids and some other nasties, if you can manage a trip, go to Vasculitis Clinic at Addenbrooke's in Cambridge. Ask your GP for a referral. Insist on this if your GP refuses. I am in London which has two Centre of Excellence for Lupus/Vasculitis clinic (St. Thomas' & UCH) and yet they both failed me. I really regret not having travelled to Addenbrooke's years ago. It would have saved me so much pain, years of illness which has contributed to a state of weakened body, basically years of my life. Let me know if you have any question. The most important thing is not to get stressed. But with itchy, burning and blistering hives all over the body, it is impossible. Funnily enough an ordinary antihistamine Piriton worked for me when all other more advanced histamines doctors prescribed failed.Good luck with your infusion! All the best

[Shannonkate93 in reply to Paprika60]

Thank you so much for getting back to me! I am going to speak to my consultant at the allergy clinic tomorrow to see if they think I could have more than just urticaria as I feel like I have a million other issues that flare up with it that don’t seem to be common. At the moment I am on treatment for urticaria so antihistamines, Montelukast and dapsone. They don’t really seem to help, if they do I dread to think how bad I would be without it. I have short courses of steroids when I’m really struggling and that is the only thing that clears it completely but as I’m down as having urticaria and not urticarial vasculitis they won’t give them me for more than 5 days every now and then. I may not have this but I felt like I needed to research into it and speak to others, I am sorry you have been struggling for so long! I will have a look at that clinic also, thank you so much - edit as I forgot to add! I also have under active thyroid and low IgA antibodies, both auto immune issues also so this is why I’m researching more as I feel it can’t be a coincidence I have quite a few problems and seem to gain a new one with each flare up!

[Paprika60 in reply to Shannonkate93]

You don't want to be on steroids for any long term. Short course is a life saver but long term will get you down the slippery road. Make sure you are taking calcium. Take care.

[Shannonkate93 in reply to Paprika60]

Just letting you know I spoke to my consultant today and as well as starting my new treatment tomorrow I am also getting some blood tests done to check for the possibility of vasculitis! They did seem quite concerned with my bruising along with some other symptoms so I am hoping they figure if the cause!

[Paprika60]

Good that your doctor is taking your case more seriously and taking it further. But I do hope it is a case of you having more of allergy issue rather than vasculitis. When you know more, let me know if you have any question. I may be able to help. Good luck to you!!