They have a lot of research out. Basically, doctors should cater the issue of levels to the individual. Meaning, you could feel fine at 600 where somebody else needs to be at 1200. If you are having symptoms, that is the indicator that you need to make changes, and that should be the main guide for the effectiveness of therapy. Three week infusions is not uncommon, and may make a huge difference for you.

And, GI issues are very common with CVID. A lot of folks experience only GI issues, or frequently have GI problems in conjunction with infections. Before all my treatments started would eat and everything would go through me. I was 30 pounds underweight. I am pancreatic insufficient, and have chronic pancreatitis that caused my issues, and have resolved the worst of it since starting enzyme replacement therapy. But truly, CVID is capable of messing up pretty much any body system. Do you see a gastro doc to help with those symptoms?

Hi Stimpy (and hey Glider, glad to see you posting),
I am still pretty new, just 3 months in so I can't speak to the blood levels. I'm still learning. I have no IGa and from what I understand, that contributes to the major issues with chronic diarrhea and such. Last time I death with it, I was hospitalized to help get it under control. It is what led to my diagnosis. I am gluten free and taking probiotics but it is still not quite under control right now. We are still working on another medication to manage the stomach ache I have every day form bile overload.

Hi Glider and Zen. Gaaaaawd.........I am soooooo tired the week before my infusion, I think my Ig level (the one that can ONLY be replaced) at time of infusion is 600, I NEVER get infections, but I am SOOOOOO tired the week before, so I am thinking of asking my Dr. to bumping up my infusions to every 3 weeks to see if it makes a difference in energy. I have zero Igg, Iga, Ige and Igm, I produce none of them, so maybe I need it every 3 weeks, but I never get infections anymore, but I have been doing IVIG for 17-18 years and I ALWAYS get major fatigue the week before, I put myself on the river denial about it but I think Monday I am going to ask for every 3 weeks to see if it makes a major difference. Thanks for listening

stimpy YOU ARE BACK!!!!!!!!! princess sent you a message do you get it?

btw got so excited to see your name I didn't read your post! LOL I go every 3 wks and my levels last month were IGg almost 1400! and all sub class levels were in the norm range granted the low norm but I have NEVER had all sub classes in the norm rangebeen on every 3 wks for 5 yrs now really makes a difference..also my igg replacement is now 60 g every 3 wks my levels have never been better and I am on low dose chemo every mth...

hi. sorry I'm late to the party. I'm on my 3rd infusion. when they did my blood levels after the first infusion I dropped below 600 so now I'm on every 3 weeks. and I did get slammed with major fatigue. I know that info coming from a newbie may not mean much but I wanted to jump in anyway and introduce myself. hope you are back to stay for awhile. we always enjoy and need the input from you guys who have been around for awhile. I wish you luck with your next infusion if its every 3 or 4 weeks hope the fatigue goes away. I have IBS so if the weather changes, I eat the wrong thing, or I cross my eyes wrong I'm hit with severe diarrhea. so I can't help much there. they say the infusions should help with the IBS but hasn't yet :-(.

blessings
deb

I have Celiac disease. Actually, that is what brought me to an immunologist. I started having major problems with all food. I would eat and be sick. I would break out in a rash. For the most part, I am constipated. Severely. Now that I started IVIG, I have diarrhea. Go figure!! But, I am actually like it because I can go 5 days without going to the bathroom.

So, I have severe GI issues. I am also gluten free and milk free as that makes it worse. Going gluten free has made this better in that respect.

Probiotics can help people and so can yogurt.

My low levels are under 1000. If I am near 1000 igg then I can stay at four week intervals between ivig. If it goes under 900 I have to do every three weeks. 600 sounds way too low.

I am really new to this so we are still adjusting mine...sorry I can't be of any help.. only been doing this 5 months...

Mine was diagnosed because of lots of infections and chronic diarrhea that would not go away. By chronic I mean 30-50 times a day, to where I was hospitalized. I take Tincture of Opium for the diarrhea, 6 times a day. Like glider I have chronic pancreatitis, but mine was caused from hemochromatosis. I take pancrelipase brand name Zenpep 6 capsuls before each meal, and this has helped a lot. Since starting IVIG I actually have days with no diarrhea, which has not happened in almost 5 years, and I only run to the bathroom maybe 3-5 times a day now. Big improvement...Looking forward to no diarrhea.... Sorry for all the bathroom info...

Hope you feel better..
Cheryl