There were moments at my worst where I would shake in terrible pain of this hives

(Diagnosis – Autoimmune Urticaria and Urticaria Vasculitis). This month marks 1 year Hive and Vasculitis free. I cannot express what this means to me and my family. It’s almost like a dream.. a nightmare.. There were moments at my worst where I would shake in terrible pain. Hubs rushed me to emergency in the middle of the night so many times we lost count, and he found me in the bathtub crying and screaming silently for help that I was worried would never come. It was the most trying time of our lives and my family and close friends stuck with me. I won’t tag you all but thank GOD for my best friends who were there for me through this. There were times I didn’t think I could go on frankly. Even writing that makes me insta-cry. But with faith, hope and love- and a doctor who didn’t give up on me.. we broke through. Some aren’t so lucky. Someday I’ll figure out how to help others with these diseases. Never give up!!


Discussion


Marianne Baker Wow that’s great news. How did you get over it?

Jennifer Patterson Did it just go away on its own?

Kristen Soderberg See below

Melody Matthews We all love a success story. Do tell what worked for you!

Ana Garcia Congratulations🎉 please do share what you did to get better. Lots of people are waiting to hear from you about it

Krista Morgan How bad was your bruising with vasculitis? I bruise but don’t know if it’s from scratching or not. How did you break free of the hives.

Kristen Soderberg Ok so. I was pregnant when the hives came on. Turns out those were Autoimmune. Then 3 months Post partum the UV hit. We tried all sorts of stuff and by 8 months Post partum my doc said I had no choice but to start a chemo drug because I was on high doses of steroids too long.
So to get Hive free- I was on:
Xolair every 2 weeks
Methylprednisolone
Cellcept
Plaquenil 400mg (had been on it 6 months)
*i was also on a TON of antihistamines but it turns out those weren’t working at all so it doesn’t matter to the story
Once I became Hive free I started to VERY slowly wean off the steroids. Then once I was weaned from that, I very slowly started spreading out the xolair. Once I had that to once every 4 weeks I started weaning the cellcept. Then once I weaned the cellcept I stopped the xolair. I am only on plaquenil and will stay on 300mg per day.

Kammy Eisenberg What suddenly made you hive free?

Kristen Soderberg Kammy Eisenberg sorry maybe I explained it wrong. Its when I went on all those meds above at once that I listed at those doses

Mary Dean Kristen Soderberg – Thank you So much for sharing all these details. This is great information and it does give hope for other people, including me. You are already helping people suffering with this. I am So glad for you.

Ana Garcia Thank you for sharing the info. People are always desperately looking for meds that help and someone stops having hives it is very helpful if they share what was done. I, too, have been on Plaquenil successfully now for over a year and a half. This is the third time in my life I get a flare up. I try to lower to less than 100 mgs daily but then slight symptoms start appearing. It has allowed me to live my life happily again

Renee Bumbulsky Wetterau Plaquenil worked for me as well. It did take a few months to kick in. I also have autoimmune urticarial vasculitis

Kristen Soderberg It took 6 months for me to work!!! Glad I listened to my doc when he kept pushing me to start it.

Renee Bumbulsky Wetterau I also take 50 mg of dapsone . Have been clear almost 2 yrs..

Lisa Coleman Patrick You may have just gone into remission. I have had autoimmune urticaria since my early 20’s, I now 53 I have gone into remission three times. I can be hive free with no medication for 5 years or so it always comes back! The longest I have had breakouts at one time is a little over three years.

Kristen Soderberg Yes I understand all that. Thanks

Helen Spiridis So glad to hear it all worked out for you. I hope one dat – I have the same result and be hive free forever.

Patty Stuart Stach I tried plaqunel but it caused me to have stroke like symstoms on my left side .

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