I am after some advice and guidance….
My back story; I gave birth to my second daughter almost 3 years ago and unfortunately picked up a serious infection in the hospital and suffered post partum eclampsia. The after effects are hypertension and a haywire immune system. I have daily hives and angiodema.
I have no apparent triggers, no allergies, no food intolerances, all blood tests clear, just awaiting results of Hpylori. I also suffer migraines & IBS. For the hives I take a daily cocktail of certirizine, ranitidine, montelukast, vit D, vit B12, quercetine & bromelain, calcium & magnesium, a probiotic to help with leaky gut and a handful of other meds for blood pressure & migraines! I also carry an epipen & inhaler for emergencies. I have taken Pred which helped but the rebound was horrific. My New Year’s resolution was no more steroids!
I live near London and have thankfully been placed in the care of the dermatology team at Guys & St Thomas’ Hospital. My hope was to be approved for Xolair but unfortunately I had breast cancer at 25 (am nearly 40 now!). They are awaiting more info from my oncologist but have also mentioned Dapsone as an alternative (but Dr Google makes it sound pretty grim)
So…. my questions are;
• Has anyone been approved for xolair with a history of cancer?
• Has anyone used Dapsone and did it work? What were the side effects?
Thanks for listening. CIU really is a bitch!
Kristen Soderberg This pretty much happened to me and they reran all my bloodwork at THREE MONTHS post partum and found out I now have autoimmune Urticaria and Urticaria vasculitis. (UV was diagnosed by a biopsy),
I ended up having to go in plaquenil (started working when I’d been in it 6 months), xolair 2x per month and chemo (cellcept) and I’m now in remission since 10/2016. I thought I’d die. Don’t give up!!!! I emailed my doc till he couldn’t stand me any more 😂 and made him fix me
Susan Belloni Dapsone works for me, and I start tapering after 3 weeks just because that works for me. You have to have your blood tested for an enzyme deficiency to begin with and every month or so for anemia, immature red blood cells and other odd things, but those things reverse when you get off the Dapsone. After three weeks I got immature blood cells and short of breath but no hives so I started taking a half pill for a week or two , then a quarter another week or two. It took me about 10 weeks to get better on it.You can find all the MD protocols out there for refractory urticaria on UpToDate.com or .org. including Dapsone, how much to take, side effects, etc.