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No advertising or solicitation is permitted on the forums. We would like to point out that the purpose of our forums is for the exchange of relevant experiences and the friendly support to other people who share our immunodeficiencies. The forums do not aim to provide detailed medical advice, as we are not able to verify the integrity of the views made through the forums. Members of National Member Organisations (NMO) who wish to ask medical questions may do so via their NMO via telephone or e-mail and they will be helped personally and privately (for contact possibilities see: About IPOPI/Member Orgs).
General Discussion : IPOPI Forums
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CVID and Chronic Urticaria
Posted by: Idiopath (---.gene.com)
Date: March 02, 2007 01:40AM I was just diagnosed with CVID about 6 weeks ago. I have hypogammaglobunemia, no immunoglobulin to speak of. I have been having absolutely unbearably itchy hives for the past 6 months. Have any other CVID folks had this before? Will it go away if I begin immunoglobulin infusions? It's really difficult to enjoy life with this condition.
I have decided to blog about my experiences getting treatment for this diagnosis. Let me know if you have any helpful information: [idiopath.wordpress.com] Re: CVID and Chronic Urticaria
Posted by: everetra (---.hsd1.ma.comcast.net)
Date: March 03, 2007 01:01AM I get itching, though not hives. I have found that IVIG does not really alleviate the itching. I have been getting IVIG for over 15 years. There are two things that seem to help: 1) warm weather (>40F) and 2) a gluten free diet (believe it or not). I have absorbtion problems and by going to a gluten free diet the itching seems to go away. How's your gut? Vision? Joint pain? Any weight loss? I am also lactose intolerant. Fortunately Lactaid puts out white and chocolate milk products that have increased my dietary satisfaction immensely.
You should have blood tests for all your electroljyes, red blood cell items, albumin, etc. The malabsorbtion is my biggest nightmare. I am now also getting IV Iron. Make the Drs. help you! Re: CVID and Chronic Urticaria
Posted by: lauraj (---.client.dsl.net)
Date: March 03, 2007 04:06PM Hi,
I have CVID and have struggled with chronic urticaria for about 10 years (I'm 31). I also haven't found that the IVIG (or in my case, sub-q) has helped much, but I take a lot of different antihistamines and try to just live with it. I take my heaviest dosages at night so that I can sleep, since the drugs make me drowsy. Chronic urticaria is difficult to treat, since w/CVID, it's usually autoimmune or idiopathic, so it's not like we can remove allergen triggers, etc. I would just try to work with your immunologist to find a drug combination that brings you some relief from the symptoms. My CU has gone in and out, and I currently haven't had a hive in about three weeks, which is such a relief. Hope this helps! Here's to an itch-free weekend, Laura Re: CVID and Chronic Urticaria
Posted by: Idiopath (---.sfo1.dsl.speakeasy.net)
Date: March 05, 2007 03:34AM thanks for the responses. Have either of you tried any other enzyme therapies. I am thinking about starting the Lactaid but I have been reading about other types of enzyme supplements that help break down protiens before they enter your bloodstream. I guess that since I have no IgA to speak of and since this is the most prominent immunodefense for the colon, proteins get through to the blood that shouldn't.
Regards, Matt Sorry, only registered users may post in this forum.
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