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.
I have a theory about the impact of drugs that can induce CVID on my system. As many of you know, various drugs such as seizure meds and some cancer drugs can induce CVID in some people, but what impact do they have on those of us who already have CVID? My theory from my personal experience is that they make us sicker.
I was on one of the drugs, Trileptal, for about 2 years. During that time I was diagnosed with CVID and got sicker and sicker. After finding out that Trileptal was known to cause CVID, I had my neurologist switch me to a different drug that has no history of affecting the immune system. According to studies, if the Trileptal had caused the CVID then my Ig levels should have increased since stopping it, but no luck there. However; based on how much better I feel since stopping Trileptal, I believe it was related to my recurring infections--that it made me even more susceptible to them than CVID alone.
This theory is being tested again by Restasis. Restasis is made of Cyclosporin, a drug used for transplant and cancer patients, and also known to induce CVID when taken systemically. Restasis is an eye drop used to treat chronic dry eyes and I after taking it for nearly a month (the amount of time to reach doping levels), I came down with a very serious sinus and respiratory infection for the first time in months. Coincidence? Perhaps, but I'm paying attention and will see how quickly I bounce back after stopping the Restasis.
I was on one of the drugs, Trileptal, for about 2 years. During that time I was diagnosed with CVID and got sicker and sicker. After finding out that Trileptal was known to cause CVID, I had my neurologist switch me to a different drug that has no history of affecting the immune system. According to studies, if the Trileptal had caused the CVID then my Ig levels should have increased since stopping it, but no luck there. However; based on how much better I feel since stopping Trileptal, I believe it was related to my recurring infections--that it made me even more susceptible to them than CVID alone.
This theory is being tested again by Restasis. Restasis is made of Cyclosporin, a drug used for transplant and cancer patients, and also known to induce CVID when taken systemically. Restasis is an eye drop used to treat chronic dry eyes and I after taking it for nearly a month (the amount of time to reach doping levels), I came down with a very serious sinus and respiratory infection for the first time in months. Coincidence? Perhaps, but I'm paying attention and will see how quickly I bounce back after stopping the Restasis.
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
It's always been my understanding that CVID is a genetic disease. I"m in that camp, ill from nearly day one of life, but certainly ramping up later in life and then slamming me in my 30's and becoming undeniable in my 40's. (which is why so many are not diagnosed until their 30's and 40's).
Just wondering if this is anecdotal evidence, or if they have clear evidence of CVID being caused (not triggered) by these drugs.
Thanks :)
> genetic disease.
As a minor aside regarding terminology.
I believe that 'PrincessButtercup' should have used the term 'hypogammaglobulinemia', rather than 'CVID', to refer to the case where IgG levels were reduced by medication (rather than its genetic source, CVID).
A quick rundown of terminology is available here ... http://www.utoronto.ca/kids/Hypogam.htm
That said, I'm not personally aware of medication that affects B-lymphocytes or immunoglobulins. (That's not to say these don't exist. I just didn't think that they worked on the humoral system, so much as on they did on T-cell counts.)
Kris
i suspect my son and other daughter have cvid....my nephew was tested he is 8 and has "some abnormal results that bare watching"....
i wonder often when i read the odds of family members getting it when i look at my family!
i am in a genetic study with harry schroeder at UAB kirklin clinic in bham al from his findings our family has an increased chance of having cvid based on the defective gene he found.....
go figure they sure dont know enough about the immune system for my comfort level!
Causes
The primary cause of common variable immunodeficiency (CVID) remains unknown despite 40 years of research. Part of the problem is the heterogeneity of the disease.
Genetic factors may be involved. In approximately 20% of patients with CVID, a first-degree family member has a selective IgA deficiency. This finding may indicate that the genes are linked.
When more than one family member is affected with CVID, approximately 5% of the patients have a concurrent IgA deficiency.
Further results reveal specific localization to the C4A gene and, rarely, to the C2 gene in the class III region of the major histocompatibility complex on chromosome 6.
No clear pattern of inheritance has been observed. Because most patients represent sporadic cases and because they have no family history of immunodeficiency, different modes of inheritance such as autosomal dominant with variable penetrance, autosomal recessive, and X-linked forms have been reported.[28]
An autosomal recessive pattern of inheritance is suggested when more than one family member is affected.
CVID is associated with the use of antirheumatic or antiepileptic drugs. If such an association is later proven to be a causal relationship, the genetic etiology may turn out to be a genetic predisposition to the disease. A common insult to the B-cell differentiation pathway may be involved.
Also, Hypogammaglobulinemia is slightly different from CVID:
Hypogammaglobulinemia is a type of primary immune deficiency disease characterized by a reduction in ALL types of gamma globulins
I also don't think that the Trileptal caused my CVID, but I think it may have contributed to my frequent infections since I've been much healthier since stopping it. Really, the point of my post is that I think that if a drug has a reputation for having caused CVID in other patients and studies, then rather than having the attitude "well I already have CVID, what harm can it do?", we might want to note whether the benefits of the drug outweigh the risk of increased infections...or at least note whether there is an increase in infections after starting the drug. It's just something to be aware of.