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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tinalovesmusic 05/03/2013

I've just gotten out of the hospital. Heres what happened:

1st Hizentra infusion (sub q) was during my training with a nurse.Infused over April 14-15 (day 1: 5ml, day 2: 20 ml). About a day after that, I got a rash and flushed cheeks. We don't know if it was from the Hizentra, or the Celebrex that the doctor had given me. My nurse told me to wait until the symptoms had gone before trying again. I also stopped taking Celebrex April 16.

2nd infusion: April 29 (5 ml). All is fine. As I'm getting a very low dose at this point (20 g/month), nurse suggests I go for it and do another dose the next night.

3rd infusion: April 30: I get 1 ml of product in, husband says it looked like I had a seizure, called an ambulance, had a headache on left side while paramedics are there, heart rate spiked at the same time as my headache occurred, then back to normal, but headache has remained. While in ER I got a rash on my arms, which went down after about an hour (no treatment) They tell me while I'm in there that I have pancreatitis, and hows my pain?
I can handle a lot of pain, so it hadn't really been bothering me; I also thought it was tied into my diagnoses of Fibromyalgia, the nausea and cramping I thought was related to the fact that my dose had been lowered a few months ago, and symptoms of IBS had returned.
MY QUESTION TO YOU:
Seeing as how the nausea started after infusing the first time when training for subQ, has anyone ever heard of an occurrence where a person gets pancreatitis as a result of using Hizentra, or any other SubQ IgG treatment? Or are we more likely to get this sort of illness as result of our lowered immune system?

gliderlove 05/03/2013

I am just getting over a bout of pancreatitis. Mine was caused during an ICU stay recently. We are assuming that my GI issues are because of the immunodeficiency, and I take enzymes every time I eat because otherwise I don't absorb my food and drop weight like crazy. They had messed up my enzymes and I got pancreatitis as a result. I know that is probably not relatable in this situation, but many of us have a great amount of GI issues along with infections and it will make us more prone to weird things like that. I don't know that this is any help, but I hope you are recovering and feel well very soon! Maybe somebody else can answer your question better. Good luck!

tinalovesmusic 05/04/2013

Thanks for sharing your info. Have you had a flare up of pancreatitis before?

gliderlove 05/04/2013

This was the first time I was diagnosed with it. I have pancreatic malabsorption though so have gut issues, nausea, vomiting, etc. a little more often than the typical person and have just learned to adjust to it without thinking anything of the symptoms. Pancreatitis is basically an angry pancreas though. It causes a lot of inflammation, and a lot of times your blood levels will normalize with a very minimal diet for a week. Do you have increased GI symptoms on a regular basis when you eat? If the GI problems are a normal struggle for you it may be possible that you are more prone to having excessive problems. I eat high calories on a normal basis to keep my weight healthy but don't eat greasy, fatty, or heavy foods and break up my food intake into about 8 sittings a day rather than 3-5 so my stomach isn't overwhelmed and can digest better. Let me know if you have any questions though, and I can do my best to help out if I can! Definitely here for support and good juju though!

LightLines 05/05/2013

I have not had pancreatitis in relation to Hizentra - it was happening before I started taking it and in fact was the reason I started on Hizentra (i.e. they found the CVID as a result of trying to figure out why I was getting pancreatitis). What was interesting in my case is that I drink absolutely no alcohol and haven't for over 20 years due to severe allergies to everything under the sun (contents of alcohol aren't labelled where I live), which tipped the doctors off right away that there was an autoimmune process going on. I think that it is part of the possible spectrum of autoimmune disorders that happen with an increased frequency when one has CVID. The good news is that Hizentra has reduced the intensity and frequency of the pancreatitis to almost nil in my case.

Diet is key to managing inflammation of the pancreas (with some help from digestive enzymes), but fortunately it can be very effective. Good luck!

tinalovesmusic 05/05/2013

I didnt think I had any pancreas problems before 2 weeks ago, but there can be so much pain circulating through my body that I just ignore it unless I cant move. i'm a light drinker, and do have coffee, but have lots of water every day. I'm confused as to why this happened to me.
Prior to going on IVIG, I had lots of IBS symptoms, but they calmed down to the point of not being an issue after about 4 months of treatment.
I had been trying to find out out of pancreatitis is considered an autoimmune disorder, as i guess that would make sense.
I am still on liquids since May 1, with really no appetite. Part of it could just be that I am worried about causing more problems, but I REALLY like my food, so I think I'm sicker than I realized.
Any diet suggestions for when I get into solids again? Right now, I have moved to fruit smoothies and milk, but am tempering that with a lot of water and apple juice. My first thought for food was white rice or oatmeal. Any suggestions would be welcome :)

gliderlove 05/05/2013

Rice and oatmeal are great options. Of course jellos, pudding, applesauce, ice cream. Fish is easy and light meats such as turkey may be a good starting point. Mashed potatoes went well for me. Bread was fine in the beginning and I handled pasta without heavy sauces. Avoid anything heavy, or anything with a lot of grease, fat, or citrus. Don't be too afraid to try things just listen to your body and take it easy. Keep portions small, spread out your meals, and avoid foods that may be upsetting to your stomach after eating them. Hope it goes well for you!

tinalovesmusic 05/07/2013

Thanks for the meal suggestions!

deleted_user 05/07/2013

Wow. I am so sorry you had such a dramatic response. I have been having pancreatic symptoms for months but never acute pancreatitis.
I was told at one point is was autoimmune. I think (this is just me) that it all comes down to our weird, zebra bodies. We are pretty mysterious to modern science. I hope, in the future, there is a cure for CVID. In the meantime, we all get taken care of, piece meal, it seems.
I hope you feel better soon.

tinalovesmusic 05/07/2013

I think you are right about it being a zebra thing.
I still have no appetite, but I am having drinking a lot of water, herbal tea, some milk and juice. I've tried some foods, but my stomach twirls, and then the pain kicks in, so i am just taking it really slow to get back into food.
I am so slow to heal that this doesn't really surprise me, but I plan to keep calm and carry on :)

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