Hi,

I am new. I was diagnosed with CVID ten years ago. I just took a Prevnar Shot. Has anyone else had it work for them?

Thanks,
Susan

Hello, all.

I am new to this group, recently diagnosed with CVID. Of course I've had it since I can remember, and had many of the classical symptoms along with some autoimmune diseases, but it took the doctors forever to put it all together. I guess I have a pretty typical story.

I read the posting from Sue regarding Prevnar and am very interested in getting more information about it. My immunologist and I think its a good idea for me to get it, because even with Subcutaneous Ig, I'm still getting pneumonia, but neither of us know what doseage is suitable for adults. I know there was a clinical trial in Seattle that ended recently that was designed to determine the optimal adult dosage, but I can't find anything on the web regarding the results of that trial.

If anyone else has received this vaccination, I would love to know the dose you received, as well as your experiences with the vaccination.

Thanks to all.

Donna

Hi!

My immunologist and the microbiologist do not think CIVD patients should received Prevnar or any other vaccin (like flu shot)since we are not able to developpe the adequate antibody response to them.

Bye

Rose-Marie

Thanks for your input, Rose-Marie. I'm sure this approach wouldn't work for everyone with CVID. Perhaps it depends on whether the T-cell side of a patient's immune system is working well, and whether the immune system can respond at all to protien antigens. Although for me it sometimes requires multiple exposures, I can apparently develop antibodies to protien antigens, but not to polysaccharide encapsulated bacteria. For instance, after three exposures (two vaccines and one actual contraction), I finally do have immunity to Rubella. After numerous vaccinations, I also have protective antibodies to tetanus and diptheria.

Pneumovax certainly doesn't help me at all, but because Prevnar is a protien-conjugate vaccine, in which seven strains of the most common disease-causing pneumococcal bacteria are bound to portions of the diptheria toxin, my immunologist and I are hopeful that getting this vaccine might help me. It works, I read, because it stimulates T-Cell based immunity, rather than the B-Cell, IgG based immunity that Pneumovax produces in "normal" people - whoever they are!?! For people like me who can recognize these protien antigens, it also might work by tricking the body to generate antibodies to the pneumococcal bacteria because it has been stimulated by what it already knows is foreign - the diptheria toxin protien.

Of course it is all academic if we can't figure out how much to give me! There is an "ask the expert" feature of the AAAAI web page (American Acadamy of Asthma Allergy and Immunology) where doctors can submit questions to immunology specialists. There, Dr. Arnold Levinson (Immunologist at University of Pennsylvania) has posted his recommendation that Prevnar be given to patients suspected of having CVID to test their immunities to protien-based antigens. A few other docs have recommended on that site that immune-compromised individuals get Prevnar for protective purposes. Unfortunately, none of the docs say how much adult patients should be getting of this stuff. It is routinely used in children, but that dosage may not be applicable to adults. It is also used extensively in Africa to immunize AIDs patients, but nowhere is the dose they are given discussed.

I'll let you all know if we ever figure it out. Hopefully, my doc will be able to get an answer soon enough, but since I'm the one who proposed it, I would have liked to have saved him the trouble!
Thanks again!

Donna