Common Variable Immunodeficiency Support Group

Hey there...SO SO good to hear about your doc appointment today. The vaccine challenge will confirm confirm cvid if it comes back with low/no response. Please remember that it is recommended to get a baseline CT scan to check for lung damage like bronchectasis.

There is a subgroup on here for female discussions (CVID female issues) and I believe there are threads on there discussing these things. I do not have documentation on this that I can refer you to, but it is a common topic on the boards I am on.

Once you get on IVIG, it will take 6 months to a year for the infusions to work. And its gradual, you will notice that you were able to get over an infection with one round of antibiotics or maybe you went a whole month without getting sick...but you WILL get there (hugs)

Kelli,
I was diagnosed about 6 years ago with CVID and have been on IVIG for a year, then Vivaglobin, now Hizentra. I have been feeling very bad and I have had at least 8 to 10 upper respiratory infections this year alone.

I agree with giving people encouragement, but not everyone feels better or gets fewer infections while on IVIG or SubQ. Wnen you tell people that they will with such certainty and if it doesn't end up helping them, it can make them feel like a failure or that it is just all in their head. I know, I'm one of them.

I am glad you were helped with IVIG, just please don't assume that everyone will have the same outcome and timeline as you. My own immunologist makes me feel like a failure at times because I have been unable to work or really care for my family. It isn't in my head, I nearly passed away from complications of the condition last month.

Thanks for your understanding,
Sue

Sue,

I'm very sorry to hear of your struggles. Have you considered seeing a different immunologist who is perhaps more compassionate? Your absolutely correct, not everyone improves as much as others. This is where the "variable" comes into play with our illness. Is it possible you are not on optimal treatment?

I have never said Igg replacement is a cure. The statements made by PIDD Experts and mfgs state what I have reiterated on this site numerous times - It can take 6 months to a year to feel the effects of the product. It is meant to reduce the frequency and severity of your infections...not cure you. I personally, was sick at least 20 times per year prior to Igg. Last year maybe 5 times. ANYTHING to me, would have been an improvement.

My goal is to provide information to our group because knowledge is power. I share everything I learn about our disease on here and provide links and documentation, pictures, presentations, etc, whenever possible. I have never insinuated someone is making stuff up or that things are in their head if they are not improving. I developed a deadly lung disease from CVID and that wasn't supposed to happen once on Igg. So I can relate to the not improving aspect. Again, Im sorry for what you are going through and that others make you feel that way but I simply feel compelled to share the facts and truths about this disease whenever I can so no one has to endure the hell most of us have been through with incompetent doctors.

> My goal is to provide information to our group because knowledge
> is power.


Kelli1b --

Just wanted to thank you for all of your posts; for the time and effort you put into them, for their accuracy, for their compassion. You're doing an awesome job of sharing knowledge, and I've rarely (if ever) found fault with your information or advice. There are a lot of people out there, myself included, who are comforted and better-informed by what you've shared.

Ditto to what Vortek said. I was comforted by the info leading to resourses on this board and know that every body is different. Thanks for providing the info and hope. you are an invaluable friend to me right now, even though we have never met:)

Aww thanks guys! Made me all teary eyed at work! I love this group. Out of all the groups I am in, this one is by far, the safest forum I have found to vent and people don't attack and judge each other. We all have knowledge to share and we all help each other. Hats off to everyone :)

sometimes if you arent inproving it can be several things....
igg dose is too low
if on ivig moving from 4 wks to 3 wks can help
adding daily roatating anti bs can help
and making sure that you have not developed any auto immune disease along with the cvid...treatment can be done for auto immune with cvid IF you find a knowledgeable doc...
if you are not improving seek other docs......
i have been on ivig since 07 did great for a few yrs then went downhill again...my dose was upped added daily anti bs and discovered that i have an auto immune that they are treating and i am doing better...
so there is hope.....
kelli is right most will improve.... if not, there may be other underlaying factors it took 2 yrs for my docs to figure out what to do.....also seeing a immune doc that sees a LARGE PIDD population is VERY important if you have to travel it is worth it.....

you are in austin? so am I. I see dr. villacis for ivig and recommend him highly for your cvid. I hope you feel better soon.

I have also developed connective tissue disease and did not have much luck with rheumatologists in austin... I hope you find someone. Scott and White in Round Rock seems promising.

Yes, I'm in Austin. I saw Dr. Smith...I believe he's in the same office as your doctor. He's quirky, but he seemed smart and nice. I think I've seen every rheumatologist in Austin....I've had Lupus since I was 16, so for 21 years. Dr. Sayers is who diagnosed me at 16, but I think he's a jerk, so I switched after many years to Dr. Pickrell...until he lost his license! So, I switched to Dr. Crout (ADC). I really like him...I've been with him for many years. I've seen all of the rheumatologists in his office due to my case being so severe....that shows you that he believes in collaborating with his colleagues. There are 4 other rheumatologists in the group....they're MUCH younger than him, and they're nice guys. My mom (who has lupus and psoriatic arthritis) sees Dr. Tew there, and he's really, really nice. If and when Dr. Crout retires, I'll switch to Dr. Tew. Have you tried any of these doctors?