My husband has just been diagnosed with CVID and it has been a long 4 years of Dr. visits to figure it all out. I am wondering how people feel after they receive their treatments?! My husband is constantly fighting something illness wise and I would like to know how you feel after you receive your treatments? My husband is going to see his new Dr. on Monday and he is not sure what to expect after receiving his first treatment or how long it takes before he starts to feel better.
Any help with ideas on how I can be more supportive with all this would be a great help. Thank you!

I started treatments last month. My first infusion took almost 5hrs. They go really slow to see how you tollerate the IVIG. Be sure he says how he is feeling, even if it is just the tiniest bit strange. I began to feel a little tired and have mild chest tightness, and it was because my BP had dropped to 90/50. It was because the infusion was too fast for me so they slowed it down.
After my infusion I felt like a million dollars. It was amazing, but later that night I got a severe back ache. It was so painfull that I could not get comfortable in bed. I ended up taking some pain medication and I felt better. The next day I was sick to my stomach and feverish. The third day an amazing thing happend... my body felt alive! I had never ever felt that before. I finally knew what it was like to feel normal. It was great! That feeling come and went over the first week, but the second week after my infusion I felt well. I had a lot more energy than I used to have. Around 12days I could feel the infusion wear off.
I got my second infusion last week. I felt fine afterwords, but my neck was very sore the next day. That took 2 days to subside, and again my body feels "normal". IVIG has been the best thing thats ever happend to me.

Tell him to drink lots of water the two or three days leading up to the infusion, the day of and the day after. And make sure they premedicate him with Tylenol and Benadryl - he should bring some in case they don't. This will prevent a lot of potential side effects. Side effects are largely rate dependent, so the advice to monitor how he's feeling and have them slow it down is good too. Slower is usually better. Also, he should be patient. Some people feel better immediately, some people take months and even more than a year to fully clear out all the infections and feel better. It isn't an instant cure and it isn't perfect, but it's definitely better than not doing IVIG. Oh, and remember, sometimes it's the inflammation caused by our body fighting infection that makes us feel bad, so it also isn't uncommon for people to sometimes feel temporarily worse as all the infused antibodies go to work fighting all that infection that's been hanging out in your body.

Hi: I have been ill alot for at least 20+ years, then after alot of misdiagnosis, I started getting sores and deathly ill in January 2006. Had four surgeries and finally in March 2006 I was diagnosed with CVID. The first 5 Ivig treatments made me ill for about 3-5 days each time.Now I will admit that for about a week to ten days after feeling ill from Ivig, I feel pretty good, not great. I have to rest alot. Get dizzy, upset stomach, bones ache and a general crappy feeling. The treatments now are effecting my blood pressure when I recieve them. But I'm don't get sick right after them as much. Are they helping? I really don't know. I'm a Husband, Father and and major source of income for my family. It is hard, real hard.I had to miss work today, Treatments next week.The Big word in CVID is variable, it is different for alot of us, hang in there, I know i will.

Hi,

I have heard that there are three different manufacturers for the IVIG. I have been told that some people react differently to the three different ones. You may not be agreeing with the brand you are taking. See if they will try a different brand.

Laura