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mws952002 04-20-2012 06:13 PM

CVID Questions
 
I have a couple of questions. I am currently waiting for response to pneumonia vaccine. Had chest CT scan with some granulomas and just told pulmonary function results. Confirmed active asthma (air trapped in lungs). Put on inhaler right away. But my questions are, 1) is it possible to have CVID even with normal antibodies to flu & tetanus? 2) Does CVID progress, e.g. is it progressive disease, or if you have a mild case, is it likely to stay mild? Thx.

cvidmama 04-21-2012 10:56 AM

Re: CVID Questions
 
[QUOTE=mws952002;4965205]I have a couple of questions. I am currently waiting for response to pneumonia vaccine. Had chest CT scan with some granulomas and just told pulmonary function results. Confirmed active asthma (air trapped in lungs). Put on inhaler right away. But my questions are, 1) is it possible to have CVID even with normal antibodies to flu & tetanus? 2) Does CVID progress, e.g. is it progressive disease, or if you have a mild case, is it likely to stay mild? Thx.[/QUOTE]

They shouldn't be checking for antibodies to flu. I think my tetanus was normal and my pneumonia was low or no antibody response. Its only required that you fail (low or no response) to one (if I remember correctly).

The trick here is the word "variable" in the disease name. It varies in ALL of us. Some never get sick and only have tummy issues. Some are sick constantly. Its good they did the ct. Keep an eye on the granulomas for changes (multiplying, growing larger, etc). Once on proper treatment the disease may stabilize, but there are no guarantees. Again, we are all different. The expectation is that most go on to lead a normal, productive life. Be your own best advocate, have an awesome, experienced doctor and if you keep getting sick after 6 months to a year of treatment as to increase your IgG.

mws952002 04-26-2012 07:45 PM

Re: CVID Questions
 
Went to pulmonary dr today. lung function results consistent with asthma. The calcified granulomas no concern; old infection. Was a bit surprised I had a few small non-calcified granulomas that will be watched (I thought only one.) Another chest CT in 6 months. If no change another one in year. If change then assess if biopsy is needed. While the CT report noted no evidence of bronchiectasis when she was going through the scan with me she said borderline bronchiectasis. At the end of the visit, she said no. She was very clear in getting infections treated sooner rather than later because lung damage can be done. Colonoscoy in am then all tests done until next blood test to check antibodies & pneumvax too.

pmull3 09-13-2012 02:43 PM

Re: CVID Questions
 
I know that this is late in coming since the last post but I too had asthmatic symptoms after starting IVIG. Turns out that the ivig went right to my sinuses. The post nasal drip from my newly liberated sinuses created some chest congestion. Once I got that under control the asthma symptoms stopped. This may be bad, but I use a neti pot once a day. It really seems to help. (The water is passed under a UV light):)

mws952002 09-14-2012 06:21 PM

Re: CVID Questions
 
Thanks.


[QUOTE=pmull3;5055390]I know that this is late in coming since the last post but I too had asthmatic symptoms after starting IVIG. Turns out that the ivig went right to my sinuses. The post nasal drip from my newly liberated sinuses created some chest congestion. Once I got that under control the asthma symptoms stopped. This may be bad, but I use a neti pot once a day. It really seems to help. (The water is passed under a UV light):)[/QUOTE]


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