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IVIG therapy for Chronic Hives and angioedema

Posted , 3 users are following.

JiG215
JiG215

Hi! 

I have been suffering from chronic urticaria and angioedema for the past 20 years off and on. I am 34. In the past, the flare ups lasted 8-9 months and I responded to prednisone, sulfasazine, Zyrtec, Zantac, atarax, etc. 

This current flare up started August 2016 and the hives and swelling have been occurring on a daily basis to the point of debilitation. We followed every protocol and step for treatment for hives and swelling to no avail. I have tried immunosuppressants, sulfasalazine, high doses of steroids, H1 and H2 antihistamines, Xolair, etc. My doctors are baffled with my lack of response to traditional treatment.

I have Hashimotos Thyroiditis and markers for lupus as well as other auto immune disorders. 

My doctor (allergist/immunologist) recommended IVIG therapy and while this is an unconventional approach, it is helping and reducing the occurrence of hives and swelling. When it was first recommended, the insurance company denied me so I had to appeal twice (i showed up to the second hearing with hives and swollen eyes and lips). I sent them a binder of 100 pictures (picture diary of hives), letters from doctors and research articles to help my case. After,  several months, I was approved for a 6 month trial, even though my doctor wants me to receive IVIG for 12 Months at a high dose and then maintenance IVIG after a year. 

Has anyone had any experience with IVIG therapy for chronic hives and refractory angioedema? 

Thanks!

Nadia

0 likes, 2 replies

2 Replies

  • heather94146
    heather94146 JiG215

    Posted

    Hello. I am going to follow you because our cases sound somewhat similar. I have not been diagnosed with anything but my allergist obviously knows i have an immune disorder. I am not having a bad flare up at the moment but i am so itchy and will get a few hives that actually bruise. I was able to stop my steroid that i took daily (dr didn't prescribe it that way) but i feel like im just waiting for the next horrible episode. I also had Xolair injections for about 9months and broke out still! I never heard of anyone having IVIG treatment for this so I am very curious and hopeful for you!

    I made alot of dietary changes from conversations with expierienced people in this group. I definitely notice an immediate change when i eat the things i shouldn't.

    Please keep us posted! Good Luck!

  • jana94738
    jana94738 JiG215

    Posted

    Hi I am so sorry you have to go thru all of this and nothing seems to help except ivig .. But I dont know what IVIG is .. I am taking the xolair shots and they do help at about three days after the shot then about three days before my next one they are back again.. I know how you feel it is so frustrating not knowing what is causing them and why they just dont go away.. I am so surprised so many people are dealing with this.. 
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