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.
Tomorrow (Thursday 10/14) I have an appointment in the afternoon with Dr. David Lewis. He's a pediatric immunologist and researcher at Stanford hospital.
I've written down a lot of questions that I've seen here in our group, and I plan to ask them during my appointment.
I'll update this tomorrow after my appointment too.
Here's a link to his info if any of you are curious, and thank you very much, Mark for recommending him. :)
http://dblewislab.stanford.edu/
I've written down a lot of questions that I've seen here in our group, and I plan to ask them during my appointment.
I'll update this tomorrow after my appointment too.
Here's a link to his info if any of you are curious, and thank you very much, Mark for recommending him. :)
http://dblewislab.stanford.edu/
Questions for Dr. Lewis
Should I take steroids (or any drug that lowers the immune system) ever? (eg: nasal sprays, inhalers, eczema creams, prednisone, etc)
Answer: Yes, as needed for asthma, allergies, autoimmune disorders, etc. Avoid over-use of oral steroids (eg: Prednisone) due to them affecting the blood
Should we get treatments while sick?
o What about with an infection or while on antibiotics?
Answer: Yes, unless you have a high fever which might mask a reaction to the medication
Should I stay away from children (some doctors have said that I should)?
Answer: No, but use caution. If they are sick, wear a mask, keep distance, and wash hands frequently
What is your "goal" IgG level for me?
Answer: Based on individual, but 600 for me
Will you test me for IgA antibodies?
Answer: Possibly, if I have very low IgA (under 6.0)
If I have IgA antibodies is it still safe for me to have Hizentra?
Answer: No because I will make antibodies to the IgA, and will then
Is it safe for me to receive a blood transfusion?
Answer: It is unless I have very low (under 6.0) IgA, in that case a blood transfusion could be very dangerous
Can/will you do genetic testing? I think theres a family history...
Answer: In my case, yes because Ive been sick for so much of my life. A very small percentage of people have the defective TACI gene, and the people with the other associated defective genes are even more rare. He will test me for the TACI defect.
Is it possible to have CVID your whole life, but have your immune system crash at some point where your numbers fall, or will they always be low?
Answer: Yes, but because Ive been sick for so long thats probably not the case.
Do you treat the patient or the IgG levels?
Answer: He cares about the patients well-being, and some patients are good at lower levels and there are treatments other than IgG replacement that work for them. He does not think that is the case with me.
Are you currently researching CVID?
Answer: Yes, he has a budget for researching CVID and is accepting patients for the research
How will you help me regain my quality of life?
Answer: By finding a more appropriate treatment for me.
Can CVID patients make antibodies?
Answer: Yes, especially for things like Lupus and RA
Can CVID patients test positive to things like Lupus, RA, etc?
Answer: Yes (see above)
Should CVID Patients wear a Medic Alert Bracelet?
Answer: Yes, especially if they have very low IgA, then they should specify CVID No IgA (or something like that)
Should I have antibiotics for dental appointments? (Fillings, etc)
Answer: No, the primary reason for that is to avoid heart valve infections.
Can we eat honey safely? I read that its an issue w/ babies because of them not having enough good bacteria in their intestinal tract, but ours can be wiped out by antibiotics and other drugs...
Answer: Yes
He was a very nice man and was quite patient with all of my questions. He will be running tests on me for the defective TACI gene, testing me for RA & Lupus, and repeating my Ig levels because he wants a more sensitive test to see if I have any IgA (my original test only measured down to 25). He is concerned that I might need to be on Gammaguard SD because my IgA is low, and if it's 6.0 or lower, he said I could build up IgA antibodies which would cause me to have worse reactions to my treatments.
I was there for 2 hours, and saw 1 fellows and then him with another fellow and the first one (3 total). They asked a lot of questions about infections that I've had, including skin infections. That's all I can think of right now, but I will add more as/if I think of it...
Hope you're all doing well! :)
Charlotte-Cunningham-Rundles is apparently a renowned researcher at the Mt. Sinai Hospital in NY, so if any of you live there or nearby, she would be the one to see.
http://www.mountsinai.org/profiles/charlotte-cunningham-rundles
http://www.usidnet.org/elements/uploads/files/CharlotteCunninghamRundles.pdf
Again very intersesting on the steroids usage. I can see if the benefit outweighs the consequence obviously (asthma attacks, lung disease, etc). But my docs have never ever given me steroids, have refused all together.
I also mentioned the TACI gene to the doc in LA and he mentioned wanting to test me for it as well :) At least that is the same lol
Did you ask if we are suseptible to EVERYTHING including skin infections? I got a very bad cut from kittie this morning that is flourescent red lol. Im not too concernced as I have tattoo's and a piercing that have had no issues. But curious :)
AWESOME report back girl!!! Are you happy? That is the MOST important thing :)
Should we get vaccinations?
Answer: There's not much point because of the vaccinations being covered by IVIG--except the most recent flu vaccination. You especially need it if you're on hizentre.
He said that we can have any of the IVIG products as SubQ, so if you need Gammaguard SD or something special but would rather do your infusions yourself at home as a SubQ, then that can be done. I guess if it's an IVIG product though, you have to have them twice as often if you do it SubQ.
I thought that was very interesting...
I had 600 listed as my level that he'd recommend, but he said that it was around 800.
I guess I got the 600 from him saying that some people are fine at lower levels (eg: 600, but he doesn't think I'll be one of them)
Well, the only thing that our treatments replace is IgG, so your IgA should be the same regardless of treatment.
Yes, he is saying that you run the risk of an anaphylactic reaction from a blood transfusion IF your IgA is under 6. Also, if you're getting the wrong treatment (eg: you have IgA under 6, but you're being treated with something that has a high level of IgA,), your body can build up IgA antibodies that could eventually cause an anaphylactic reaction.
For example, I'm currently on Hizentra, and it has a "high" level of IgA compared to Gammaguard SD--which, to my understanding, is the only treatment available with super-low IgA and tolerated by people with an IgA of 0. Because my original test was not sensitive enough, all they can tell from it is that my IgA is below 25 (the lowest level that this test could measure). Based on my history of bad reactions to my treatments, he believes that my IgA might be below 6, and that Hizentra is potentially dangerous for me if I continue to use it. He is retesting me with a more sensitive test that measures down to 6, and if the result is that my IgA is under 6, they consider that to be 0.
Does that help explain it better? :)