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.

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/ Common Variable Immunodeficiency Support Group

Gastrointestinal Issues

tstrong824
tstrong824
Hello, I am 22 and was diagnosed with CVID this past march. I have a deficiency in 3 of the 5 classes of antibodies those being IgG, IgA, and IgE. I was getting Immunoglobulin therapy at 40 grams every 3 weeks and my levels were in the normal range, but my doctor wanted to try moving it to every 4 weeks because of how difficult it has been fitting them in with my school schedule. I had my levels checked this last month and they were too low so he decided to up the dose to 45 grams, we will see if this raises my levels in my next lab draw. I also have a headache disorder, and gastrointestinal problems. I wanted to reach out to fellow CVID patients to see if anyone has had any luck with treatments for GI issues such as ulcers, polyps, and infections. I am pretty miserable right now, not being able to eat and having lost 40 pounds in 4 months it is beginning to be a serious problem. I am wondering if moving my infusions back to 3 weeks would make a difference? Any thoughts/advice/experiences would be greatly appreciated. Also any referrals to physicians that deal with CVID specifically within the Midwest would be helpful, I am looking to get a second opinion on treatment plans. Thank you and God Bless
tortoiseuk
tortoiseuk
Is infusing at home by sucutaneous route an option? I find it much easier to do it myself at home each week than to traipse into the hospital for hours.
tstrong824
tstrong824
I have thought about that as something that I may bring up to my doctor, I believe it is an option. Did you notice any difference in how you were feeling after switching routes?
tortoiseuk
tortoiseuk
I can't say that I really feel any different doing the subcut rather than the IV. The best thing is that I can do it in the evening while sitting at home watching television instead of going to the hospital. I think it should also make the IG levels more stable instead of the up and down that we see with the IVIG where the levels go low before the next infusion.

With regard to the stomach issues, I had terrible reflux for years before diagnosis but as soon as I started taking the daily antibiotic prescribed, the reflux disappeared. Nobody can explain that but I presume it means that there was an overgrowth of something in the stomach.
ELC87
ELC87
Have you been tested for Small Intestinal Bacterial Overgrowth? It made me miserable for over 6 years and is a common complication in CVID patients. It can be treated with antibiotics and dietary changes. You just need to get a Hydrogen Breath Test to Diagnose it.
LionsTigersandBears
LionsTigersandBears
Children's hospital in Milwaukee WI, Mayo clinic in MN you might want to look up PID primary immuno-deficiency to find an MD. I have felt better on gluten free low FODMAP diet. Taking a probiotic too. The daily aura pre-migraine has significantly improved... It took a few months to see a difference.
ninagalpeerdanielson
ninagalpeerdanielson
I have read that Gluten free doesn't help. I believe you have to start over, do the f3 week infusions and see what happens and then go from there. Are you working with a immunity specialist? The immediate benefit that I see in doing home infusions is that it keeps the infusions more stable and there wont be as many ups and downs. Some of the other people have more informed answers on the abdominal issues. Good Luck, Nina
kelli1b
kelli1b
I would reach out to the Immune Deficiency Foundation and as for a referral to immuno's in your area, keeping in mind you may have to travel a bit to find one who is actually experienced in PI. I drive 5 hours one way and boy is it worth it.

Additionally, gastro issues are VERY common with CVID. There are lots of medications that people are on. Have you consulted with a gastro doc?

Lastly, I'm super busy as well. Single mom, work full time, own a home, have no help, bake cookies as a side business...you get the picture. I do subq at home. I was doing weekly but even that was too much so I'm now transitioning to HyQvia, one needle, once a month, I do it myself at my home on my schedule. Just know that you have options. Good luck.
MissSophie
MissSophie
Tstrong824
I have been on IVIG for about 2 years now. When I first started not only did I have really bad colitis, but also cdiff. I have since had the fecal transplant a year ago and no more cdiff. But the IVIG has been amazing for the colitis. Since starting Octagam 3 months ago I no longer have severe colitis. I still have some symptoms, but not as bad as it has been for the past 40 years. I had no polyps on my last colonoscopy, which is a first for me. So Yes The IVIG has really helped.

I also take 2 probiotics a day if stomach but real bad dr has me take 4 a day. But haven't had to do this for a few months.

Sorry to hear you are having such bad GI problems. It can really wear you out. Make sure you drink Ensure or some thing with some protein in it. I drink Ensure clear, it is easier on the GI. Also I found that anything with no fat was also ok, like pureed sweet potatoes, mashed potatoes. Mashed bananas. If you do gluten, I found Hawaiian rolls were great & scrambled eggs were ok too.

Hope you start to feel better soon. Hugs & prayers headed your way.
MissSophie