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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Questions/Suggestions

gliderlove
gliderlove
Hey! I have a whole list of issues to discuss at my clinic appointment this week but am needing some suggestions on infusion reactions. I am using 10g Gammagard SC every week and always have some type of reaction and may times issues continue until it's almost time to infuse again. I don't like feeling like I never recover. I do premed. The most common issues have been continuous headaches, fevers, achiness, nausea and vomiting, loss of appetite, fatigue, and my sites can remain huge for 4-5 days after. I know these are often typical but with doing infusions every week, I never have a fully normal day. I can't keep up. A home health nurse came to assess the other day and said I was receiving too much volume though I am in the recommended ranges. They thought needle sizes might factor into me not absorbing the fluid, but it was decided I shouldn't use larger needles. I am infusing in recommended time. I was also getting low BP, heart rate but have underlying issues with my heart that cause that already. It can be difficult to decide sometimes if I am having adverse reactions, or my normal issues are flared up. They didn't want me to do IVIG because I would need a port placed right away and it's a high infection risk, and my doctor didn't want me to have a drop in levels every month. Bottom line though, if I am going to continue feeling like crud I am not sure these infusions will remain worth doing. I keep up with so many treatments that are supposed to help and to continue adding treatments without payoff makes me wonder if it's worth the commitment. Thanks for any suggestions!
deleted_user
deleted_user
Wow. I don't have any answers for you, sorry. But, I can empathize. I am having difficulties, too. Have you ever had IVIG? I know some doctors will place ports if it is really what you need. In the hospital or infusion setting, they can monitor you much more closely. I am sorry you are having such awful reactions. Have they given you a slow tubing? How long does it take to infuse the 10 grams? Have you tried to break it up into twice a week? I keep hearing about new and different ways to do it. I am going to see a new doctor in June and hopefully get some new ideas and feedback. I keep getting meningitis like symptoms. I hope your doctor can help you out.
kelli1b
kelli1b
What is your needle size and your flow rate tubing size? There are MANY sizes. I thought F275 was the slowest but it goes MUCH lower than that. It sounds like you need to slow it down? How many sites are you using? I do 10g with 5 sites and use 9 mm/gauge needles - not sure what they are called lol. Here is a link to the different FLOW RATE TUBING sizes for an example

http://www.rmsmedicalproducts.com/?node=products&item=f60&sec=ordering

What are you premedicating with and post medicating with? Plenty of fluids? Like MORE than a normal day? Have you been tested for anti iga antibodies? How many infusions have you done? Sorry for all the questions
gliderlove
gliderlove
I am using a 4mm needle and F180 tubing. I am using 4 sites and the 10g takes about 2 hours to infuse. I drink a lot more for my infusions and won't exercise on infusion day. I pre medicate with Tylenol and Benadryl and they have me take Zofran when the nausea hits. Then Tylenol 6 hours after infusion. I am not sure if I was tested for anti IGA. We never discussed it being an issue so I will check that it was actually done. I am on month 4-5 of infusing weekly. I asked to use slower tubing, but they told me I was in the recommended range. I think adding another site could help the issues with volume...I do two needles in my stomach and the others in each leg. The issue is that those are my only options to infuse and adding more sites there would still put the same volumes in my stomach and legs in the end. I have had large IVIG infusions in the hospital to boost my levels. They would want a port placed because I typically end up with 3 collapsed veins before they even get the IV set, and they have had to switch IVs in the middle of treatments before because they don't hold up. My doctor doesn't want the port due to infection risk and doesn't want my Igg tapering at the end of the month because she thinks I would continue getting sick. I'm not sure what else to discuss!
kelli1b
kelli1b
Longer needles could help with the swelling, get it deeper in the subcutaneous tissue for better absorption, i think the 9 is the most common size. I would try that before adding more sites if you are already having issues. Please know these are just my personal opinions based on all the threads and boards I'm involved in and people I talk to :) You could also split it up to twice a week until your body acclimates?? I would think if you have this bad of side effects to subq that IVIG would be worse? If needle size change doesn't help you could switch brands.
gliderlove
gliderlove
Home health assessed the needles this past week as my nurse communicates from out of state, and I was told not to go bigger because I don't have enough SQ tissue and already had bleeding upon de-accessing? The only other recommendation was asking about Hizentra because it requires less volume. Otherwise I may just push to go slower on the tubing again and see if that helps. I also wonder if just letting things stabilize will help. It has been nothing but adjustments for months, and I have been consistently sick which I know can make infusions more difficult. I may have lasted a week out of the hospital before my lungs and sinuses got flooded! Ugh.
deleted_user
deleted_user
I learn so much here! I was told that the 275 was the slowest tubing. I did not even know the needles could be different. Wow.
kelli1b
kelli1b
That was my mistake sorry :( I thought it was until I researched online lol
deleted_user
deleted_user
I use to get the meningitis type symtom from hizentra 8g subQ.And then my doctor change my med to gamunex c 2.5g +5g= 7.5 and i have not had any more problems!