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!
they call it inflammatory disease, my inflammation levels stay high, i dont test for any of the autoimmune diseases, but there is something going on and my docs are treating the symptoms. in addition to ivig replacement, i am treated for the inflammation with steriods and 2 other meds. i recently had to discontinue plaquinil since i have been battling infection after infection since being placed on it. i am currently on predinsone and lafludamine and will see my rhuemo next week to discuss what can be done since i have had to stop the plaquinil. i have daily pain from the constant inflammtion. it affects not only my muscles and joints but organs as well. my lungs stay inflammed causing pluerisy often and sinuses stay inflamed without infection so it is uncomfortable ....when the pluerisy is out of control it is treated with steroids and breathing treatments. i also take loritab 10 almost daily to help with the pain. some days are worse than others.
i have not found that ig replacement helps with the inflammation...but it does keep my infections down. i am on 55 g every 3 wks and take a daily antib with the combo i rarely have an infection that gets out of control now. but it hasnt helped with the inflammation...my levels continue to be very high. i was taken off plaquinil after repeated infections that have required strong antibs....
it is a balancing act to get the inflammation under control without suppressing the immune system too much. something my docs are still trying to balance out.
my daughter with cvid also has inflammation issues so for us it seems to be a common problem, but my cousin with cvid doesnt seem to be affected with inflammation...her cvid is mainly GI issues.
i think this is where the variable in cvid comes into play.
hang in there
Anyways thanks so much for sharing your experience, and maybe the CVID will explain this all away and then I can get some proper treatment!
Have a good day!
Anyways thanks again.
1. A lot of us believe we have autoimmune but cannot get a diagnosis from a doc because they tend to rely on labs only and not symptoms.
3. Infusions will likely not help autoimmune issues you have.
Its a rough road with us...hang in there
I will say I also have some seemingly unrelated illnesses including pseudotumor cerebri and supraventricular tachycardia.........(I say "seemingly unrelated" because sometimes we think things are not related and then we find out wow a lot of us have this "unrelated thing" in common)
I have not yet started IVIG, but will hopefully be starting soon. I've had the blood work and everything done with a top immunologist in my state (FINALLY) and now I'm awaiting the call of when my appointment to go over everything will be. I have the official CVID diagnosis already. All of our experiences are so interesting to me because we have so many different roads we have traveled and we also have so many things in common as well.
Does anyone know if there are any studies etc. out there that indicate that CVID folks don't generate antibodies that are indicatiove of the key autoimmune diseases like lupus etc.? I think my doctor would find something like that of great interest, and so far I haven't come across anything.
Thanks again and have a good day!
I did want to tell you that, like the others who have responded here, I have a lot of auto-immune symptoms with the CVID. Many have really gotten a lot better with IgGIV.
Some of my auto-immune symptoms have been diagnosed, and others are a mystery to the doctors, because the blood-work isn't conclusive. I have been diagnosed with adult-onset asthma, which has been much better since I started infusions. Before they just called it chronic bronchitis, and have had that my whole life. I have scarring on my lungs from infections, but also have nodules, which might be auto-immune, rather than due to infection. I also have a "mystery rash" that was one of my most visible symptoms. It has been called a lot of things, but never successfully treated. It's still there, but much better with IgG. It used to get infected a lot with staph, but that seldom happens any more either. I also have chronic knee and lower back pain, which is common with CVID, and auto-immune, although blood inflammation tests usually only show no or mild inflammation.
I also have narcolepsy, which many researchers are now thinking is an auto-immune disorder. I was diagnosed with that long before I was diagnosed with CVID, and years ago it was not linked with auto-immunity.
My latest symptom, which isn't painful or debilitating, but aparently worrying, is rashes of petechiae. I recently had blood tests, which showed my platlet numbers to be in the normal range, so, again, it is a mystery. When I had the blood tests done, they did find some of my white cells were out of the reference range, and that my neutrophils had dropped severely, which might account for the petechiae, and that points to possible other problems. My GP has referred me to a hemotologist, so I hope to learn more once I see her.
I have also had recent problems with my eyes - a conjunctival cyst and broken capilary. I tend to think that these are related to the CVID, but the doctors aren't quick to confirm that. They say that those things just happen sometimes.
I'm glad I started getting the IVs, just because they have helped me with all of these things, and they beat being sick all of the time, or taking antibiotics - they really mess up my digestive tract, which actually works pretty well if I watch my diet and avoid antibiotics.
I have a big problem with steroids, so they aren't of much help to me. I had a paradoxical response to prednisone - it sent my BP way up, and I turned beet-red and became very agitated - I couldn't sit still, and was running around trying to find a way to cool down. It was -5F outside, and I ended up standing out in the snow because I felt like I was going to spontaneously combust. I am able to tolerate solmedrol in small doses when my pleurisy gets really bad, but haven't had to take it in a long time. It upsets my stomach.
For me IgG has been the biggest help with the least side-effects. I am a little fluey afterwards, and used to get bad headaches 3 days later, but with adequate fluid, those have gotten much better as well.
good luck!
Have a good day!
I hope you don't find all this to be too discouraging. My immunologist thought the infusions might help at a high dose, but no luck yet. I will say that I have had very few infections or viruses since I began infusions February 2010. My immuno does believe my autoimmune issues to be directly related to CVID.
I hope you get the help you need.
they tend to be in the 60s 10-20 is normal range
but all other tests come back neg
I guess I will have to start thinking seriously about the IGG now. And I think I am going to have to be very clear with the rheumatologist on Monday that she will have to focus on my symptoms rather than just my bloodwork.
I do worry that I have messed my lungs and perhaps other organs up by delaying the IGG or by just trying to pretend that this wasn't an issue for me, and that I could deal with it by a "mind over matter" approach. I suppose I will find out soon enough.
Anyways this has been a real eye-opener, and I am grateful to you all for sharing your thoughts regarding this! I will post again once I have had the Drs follow up appt in case anyone is interested in the outcome.
Have a great day!
One of my most disturbing narcolepsy symptoms is "sleep paralysis," which is very common with narcolepsy. Anyone can experience it, but I used to have it as many as 10 times a night, and any time I fell asleep during the day. When this happens, your conscious and unconscious brain are working simultaneously, so you know where you are, but your nervous system is shut down so you can't move, and you are dreaming. It is a sort of halucinatory experience that can be very frightening.
When my neurologist found out that I was getting infusions, he asked me how the sleep paralysis was. I had to stop and think about it, and then told him that I hadn't had any episodes in months! He then told me that researchers think that IgG infusions could help sleep paralysis, as well as catalepsy, which is sort of the same thing, only it happens when you are awake, and usually when you are laughing really hard, or startled suddenly.
Even so, he won't admit that the CVID and narcolepsy could be related, but I think he is becomming more open minded about the possibility.