I have had terrible hives for almost 2 years now

I can’t tell you how relieved I am to find a community who gets what I’m going through! Although you would have felt this way when you first discovered the group!
I’ve had terrible hives for almost 2 years now, and no test has found anything conclusive.
I am an epileptic who takes a combination of Keppra & Lamictal daily and my dermatologist suspects this might be the cause (although I’ve been taking the two for 10 years). Sadly I can’t be taken off these medications to test for sure.
I have been through most medications – we thought Xolair was going to be the answer and I had to jump through so many hoops to get it! But after 5 months we gave that up.
There may just be light at the end of the tunnel however!
It has only been a week, but I’ve been put on Cyclosporin and have only had one major flare up and two minor ones.
I wanted to share because 1. I’m so happy and I don’t have many to share it with, and 2. It might be helpful to someone else. I have included a pic of the box (I take 150mg/day which might not be enough) and also some pics of the struggle. I have a whole album for my dermatologist

I have had terrible hives


Beth Carrier Fye Kelly I have also used successfully 2 different times. I chose a different path this time, bit know how happy you are. It was a last resort for me also and treated me better than Prednisone long term. Congrats!

Renee Ludolph Have you tried CBD? It can help with both your epilepsy and the hives, I have used CBD for my hives and I dont get a flare up when I use it, I also have a CBD balm I use to ease the itch x

Kellie Beatty Renee Ludolph oh awesome thanks I’ll look into it

Christiana Rees I wear all clothing 100% cotton bra, underwear, etc.

Kellie Beatty Christiana Rees I’ve tried changing everything! Frankly, I wouldn’t be surprised if stress about it all just aggravated it.

Stacey Martin Wow you poor lady it would be so uncomfortable

Kellie Beatty Stacey Martin it’s slowly getting better I think!

Megan Hughes Thank you so much for sharing. I’m in the same position; xolair doesnt work and I look very similar to you. I see my allergist tomorrow and I think we will be talking about cyclosporine because he mentioned it at my last appointment.

Kellie Beatty Megan Hughes good luck honey

Amy Glatter Goodman I’m so glad it’s getting better!

Kellie Beatty Amy Glatter Goodman thanks! Me too!

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