My 35th birthday. I spent the morning sitting in the Psychiatrist’s office and the afternoon sitting in the Immunologist’s office. Why you ask? Because I have CIU and that’s how you want to spend your birthday when you’re covered in hives.
But I have to tell this story because I believe nothing short of a miracle happened to me today. 6 years ago I visited a very knowledgeable, very old school, amazing bedside manner, fantastic Dr. who was one of the first to try to tackle my CIU. At the time, drugs like Xoliar were not available yet and high-dose antihistamines were it as far as treatment went. I am refractory to H1 antihistamines 🙄. Through a series of events I found myself back in this Dr’s office today.
He still had his hand-written notes in my file from 2013 that read “patient is pleasant and presenting with chronic urticaria, skin allergy test, non-responsive to antihistamines, possible autoimmune urticaria”
1 year later the FDA approved Xolair. I had no idea as I had stopped seeking treatment when I found out OTC antihistamines were the only treatment. Other drugs were off the table for me because I was 28 at the time and trying to start a family.
I suffered for the next 6 years. Daily hivesâ€¦no remission for a total of 12 years at this point. Marriage had been ruined from living with chronic illness, was suffering from depression due to CIU, the list goes onâ€¦
When I told the Dr. all of this today, he said I am so sorry for all you’ve been through, I know you’ve been living in misery, that all stops today and he asked me if I would take a Xolair shot today right then and there if his nurse had one sitting in the back.
I said yes! And he had the nurse sticking me with my first ever two shots of Xolair before he even asked me who my insurance company was. I almost burst into tears.
It’s been an extremely long hard road to get here folks. I don’t know what my Xolair journey will look like but if there is even a chance I can have my life back I am all in.
Sophie Wallace-Jenner sending positivity
Dave Dev Good luck.. and happy birthday anyway.
Maureen Davidson Good luckx
Kimberley Morris Wow! That’s A long journey! Hope this works for you!
Catherine McNicholas Good luck… it is working for me
Crystal Dawn I break out on my face and hands mainly lately
Lisa Kaichen May your birthday wish come true
Anna Galindo Fingers crossed for you. What is refractory to H1 antihistamines?
Savannah Layne Anna Galindo my hives do not respond or improve with antihistamine treatment at all 😕. I think a lot of people with CIU experience this.