Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hello everyone!
I wanted to introduce myself and see if anyone has any helpful suggestions for me re: getting to the bottom of my increasingly weird medical problems, as I am starting to get a bit desperate. I am starting to suspect that maybe they relate to CVID, and thus I thought I would ask you all for your help!
In 1998 I was told I had low IgA and low IgG overall (and also subclass 2 & 3 low). It was found as part of a work up for anaphylaxis which was triggered by a severe sinus infection. At the time I was told to monitor the levels, and that I might have to start infusions.
I was constantly sick previously, so armed with this new knowledge, I became a fiend about germ warfare, a healthfood and exercise nut and generally if I get onto antibiotics within hours of noticing something going on, I can get it under control. Thus, I have managed to avoid the infusions and have only landed in the hospital once because a respiratory infection got out of control. Therefore, probably to my detriment, I have ignored this CVID diagnosis as much as possible, thinking that I could retain the upper hand through lifestyle changes....which I guess might have been a mistake.
In the intervening years, I have been plagued by a host of weird and seemingly unrelated medical quirks that are progressively worsening. At this point I am being worked up for autoimmune pancreatitis. I also meet almost all the criteria for Lupus, Rheumatoid Arthritis and Behcets. I am now being investigated by one of the top rare disease internists in Europe (so they say) because all the internists/Gastroenterologist etc. shake their heads and say "there is something wrong with your autoimmune system but we don't know what". I have been combing through PubMed too (that shows how truly desperate I am getting).
I would be very grateful for any insights that anyone could share wrt the following:
1. Does anyone else have other health issues that resemble an autoimmune disease, but have only a CVID diagnosis?
2. Could CVID be masking/suppressing bloodwork values that would otherwise make the diagnosis of another autoimmune disorder more clear cut?
3. Do CVID and other autoimmune diseases appear together for anyone else here?
4. And if they do coexist, have the infusions helped?
Thank you all very much and have a good day!
I wanted to introduce myself and see if anyone has any helpful suggestions for me re: getting to the bottom of my increasingly weird medical problems, as I am starting to get a bit desperate. I am starting to suspect that maybe they relate to CVID, and thus I thought I would ask you all for your help!
In 1998 I was told I had low IgA and low IgG overall (and also subclass 2 & 3 low). It was found as part of a work up for anaphylaxis which was triggered by a severe sinus infection. At the time I was told to monitor the levels, and that I might have to start infusions.
I was constantly sick previously, so armed with this new knowledge, I became a fiend about germ warfare, a healthfood and exercise nut and generally if I get onto antibiotics within hours of noticing something going on, I can get it under control. Thus, I have managed to avoid the infusions and have only landed in the hospital once because a respiratory infection got out of control. Therefore, probably to my detriment, I have ignored this CVID diagnosis as much as possible, thinking that I could retain the upper hand through lifestyle changes....which I guess might have been a mistake.
In the intervening years, I have been plagued by a host of weird and seemingly unrelated medical quirks that are progressively worsening. At this point I am being worked up for autoimmune pancreatitis. I also meet almost all the criteria for Lupus, Rheumatoid Arthritis and Behcets. I am now being investigated by one of the top rare disease internists in Europe (so they say) because all the internists/Gastroenterologist etc. shake their heads and say "there is something wrong with your autoimmune system but we don't know what". I have been combing through PubMed too (that shows how truly desperate I am getting).
I would be very grateful for any insights that anyone could share wrt the following:
1. Does anyone else have other health issues that resemble an autoimmune disease, but have only a CVID diagnosis?
2. Could CVID be masking/suppressing bloodwork values that would otherwise make the diagnosis of another autoimmune disorder more clear cut?
3. Do CVID and other autoimmune diseases appear together for anyone else here?
4. And if they do coexist, have the infusions helped?
Thank you all very much and have a good day!
To net it out, according to both of them, I do not have an autoimmune disease.
The rare disease internist has concluded that all of my symptoms can be attributed to the CVID. He felt that if I started IgG I would feel better, although I would still have good and bad days, and he also warned me that it wasn't a cure.
I also saw a rheumatologist, who also concluded that because of my bloodwork being negative for everything except rheumatoid factor, I did not have a clear cut rheumatic disease, but that I should be monitored every 6 months because I had a lot of weird stuff going on that could eventually evolve into a rheumatic disease.
So I guess this means I sit tight until the new year when I can hopefully start on IgG, and hope it will be the magic cure-all. I am a bit skeptical about this being the case, but if 2 experts say the same thing then they must be right. And in any event it would be nice to feel better.
Thanks again to everyone for your comments and support, and have a good day!
With everything I have learned from this group I was terrified to stop infusions, and I would recommend that you try them and do everything you can to make them work for you. Even though I learned a lot of tricks and tips to make them as comfortable as possible, I feel a lot better without them, but there may come a time when I have no choice but to go back on them. I take daily prophylactic antibiotics to help prevent infections, and am getting sick less frequently than I was with infusions.
I wish you the best with your infusions and that they help you as much as you hope they will. There are many here with a lot of good information on minimizing side effects and making infusions more comfortable, so please let us know how they're going for you! :)
We are not, perhaps, the easiest crowd to treat, but any good professional appreciates a challenge, right?
All the best to you!
And I'll be scouring this board now for useful tips on getting through the IVIG with minimal side effects, it is so fabulous to be able to leverage lessons learned from others rather than starting from scratch!
Have a great day everyone and thanks for welcoming me to the group!