Got my 6th shot of XOLAIR

Hives were gone with XOLAIR and the crazy dose of antihistamines

Hey!!! I am about to get my 6th shot of XOLAIR next week…. there is good news and then some potential bad news. I am sorry about the long post but I would LOVE your input.
I was diagnosed with Chronic Idiopathic Urticaria 7 months ago. Luckily (after waiting for forever) my insurance approved 300mg of XOLAIR every month. During my first month I was still tapering off of prednisone (the only thing that worked) so I wasn’t sure if the XOLAIR was actually working or not. I tried every single antihistamine and nothing worked. 2nd month the shot did nothing (I was so upset), and then finally a miracle happened and half way through the 3rd month my hives went away! But only if I continued to take antihistamines.
It’s almost like it “activated” the antihistamines that had never worked before. I am on Blexten and still had to take crazy doses (4 times the regular amount) but hives were gone with XOLAIR and the crazy dose of antihistamines so I was HAPPY! At the end of the month I would notice maybe 6 – 10 hives show up like the XOLAIR was “wearing off”, but that was nothing compared to the full body 500+ hives I had before.
I got my 5th shot a couple weeks ago… and I started getting VERY BAD hives again… they are getting worse and worse every day. I had just under 2 months of relief? Then the XOLAIR just STOPPED working like it did before.
I just want to know if anyone has had it work, stop working, and then had it START working again at any point? I am currently waiting for approval for the 450mg dosage, and I hope XOLAIR starts working again!
Has anyone had this experience?


Discussion


Kimberley Ann
They increased my 6-7 month dose because I was the same. My 8th was back to 300. Not sure if my next appt will be 300 or 450.

Stacey Kay
Kimberley Ann and that worked for you?

Kimberley Ann
Stacey Kay I still get small hives on my arms. They are not very itchy. I’m to email my nurse next week to discuss symptoms and she will let me know if she thinks I need another little boost.

Stacey Kay
Kimberley Ann Okay thank you for telling me! I got approved for the 450ml with insurance so hopefully it will work out like it did with you!

Kimberley Ann
Stacey Kay very annoying waiting game

Tonya Wade Sheppard
Never be late getting your shots. This caused me to have to start all over again with the shots. Usually takes 3 to start working for me personally. Also I had a bad flare up from being sick. My dr increased my dosage to 450 and I haven’t had a problem since….fingers crossed

Stacey Kay
I’ve never been late, actually each time I’ve been a little early thankfully! I got approved for the 450ml- but I feel like I have to be patient and see if it works. Isn’t CIU SO annoying?? UGH GO AWAY! Haha

Nicole Stromath
The longer I was on Xolair, the itchier I got until I finally had an allergic reaction to it.

Jeny Amor
Anyone with the Angioedema, and did that reduce??

Morgan Payne
Jeny Amor I have angioedema. I still have issues every month. I’ve noticed the shot causes me to flair with hives now.

Mandy Clevenger Hodges
I was on Xolair for years and all of a sudden stopped working. They up my prescription to 450mg shots and that didn’t wrk either. It’s like Xolair just stopped working all together. I just recently started cyclosporine twice a day and hives as of now are better but not gone completely.

Stacey Kay
Ugh that sucks!!

Stacey Kay
Do you do Xolair and cyclosporine together?

Mandy Clevenger Hodges
Stacey Kay no. They stopped the Xolair altogether and at that time I was on steroids. Then started the cyclosporine and weaned off steroids. So far hives have seen to be less every day.

Stacey Kay
I notice some people take Xolair and cyclosporine together and say it works. I wonder if that would have worked? But I am also happy to know there is one more option after Xolair if it doesn’t work… UGH! I’m so annoyed at all of it haha

Nicole Hanni
Sooo can you update me. How are you now?

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