IgG not working - IVIG recommended - Immune Disorders Message Board

beach_tiglet · 05-01-2004, 07:42 AM

Hi, I was recently diagnosed with IgG within normal levels but not functioning properly. My IgG didn't respond to a pnuemovax vaccine hardly at all. I have been getting all sorts of strange bacterial and viral infections. When they are bacterial, of course I can't fight them off quickly. I just came off of 68 days of antibiotics because I couldn't get rid of a sinus/upper respiratory infection and this was knowing what the bacteria was and to what antibiotics it was sensitive.

Anyway, the doctors have said the only way to correct the situation is IVIG treatments. I can't really find a lot of information about them to even ask intelligent questions. I am very nervous about this and was wondering if there was anyone out there on IVIG for this problem (or period) who could point me to places to find information and/or tell me what to expect.

I was wondering, how long before you started to feel better? Did you have any side effects from the treatments? What are the risks? How long are you having to do the treatments? How long do they last each time? What do you feel like the next day? Anything you are willing to share would be greatly appreciated. Nervous newbie Dana

catbirdpondlady · 05-01-2004, 02:48 PM

Hi!
I've been taking IVIG for several months. I can tell you what I know, and also refer you to www.*************.org. There is a group called the Immune Deficiency Foundation that publishes information for folks like us.
IVIG is given for a variety of immune problems. I have what they call common variable immune deficiency syndrome (CVIDS) or panhypoglobulinemia. All of the factors of my immune globulin are deficient. I have been much better since I started taking IVIG! It has kept me out of the hospital for about 4 mos now. Before that I was in the hospital about every month with some kind of infection or another. The antibiotics had taken a toll on my system as well. I get a dose of IVIG every 4 weeks.
IVIG is made from a pool of many peoples plasma. Mixed together like that, it gives us the best variety of globulin protections that we could get. It does not have to match your blood type or anything like that because it is made from the plasma. It is safer than regular blood products. Some brands are even pasturized. It is VERY expensive, so make sure that your insurance covers it. There has been some discussions amoung insurance companies to NOT classify it as a blood product, thus the patient would have to bear most of the responsibility of the cost.
Most people do not have many problems with it at all. At the center where I get it, they pre-med me with an anti-nausea med, decadron, tylenol, and benadryl. I don't think everyone gets that, but I have had problems with many reactions to meds and that works best for me. It takes most everyone a couple of hours to get the IVIG.........It takes me 5-6hrs, because they have to give it so slowly. Afterwards, I feel like I have the flu (fever, aches, pains) for no more than 24 hrs. It is a small price to pay for the benefit I have gotten from it. I have only talked to one other person who has the same reaction that I have. Everyone else says they don't even know that they have had it, except that they are sooo much more healthy.
They will perodically do tests to see if the IVIG is helping your counts, etc. If after you have read what is available online, and still have questions, please post them. I would be happy to help you any way that I can!
Penny

beach_tiglet · 05-01-2004, 06:47 PM

Thanks Penny,

I had read it took some people longer than 2 hours and my veins blow all of the time in the hospital, so I suspect that might be me too. I also have read about the fluish symptoms, but the doctors have downplayed that. I was hoping someone would respond who had been pre-medicated. They had talked about premedicating for migraines, but not for allergies at this point. However, they took me off of allergy injections in November because I kept having anaphylactic type reactions to them. I'm glad you mentioned that they do that.

They are currently writing up the justification to the insurance (I have two), so I am in the information gathering phase.

Thanks for the website, it looks just like what I've been looking for. I'm glad the IVIG has helped you so much. Thanks for being so helpful. Dana

catbirdpondlady · 05-02-2004, 12:15 PM

Dana,
Glad to be able to help.
Another thought. My veins were totally ruined from steroids for the MS and they finally put in a port-a-cath. It is an appliance put under the skin and attached to your vascular system. Then when you have to have your IV meds, they put a special needle into the port (through you skin) and you have no more problems with blown veins, etc. Of course, the decision to put one in is totally up to your doc. Between treatments you don't have anything hanging or sticking out of your body like you would with a pick line or central line. They put the port-a-cath in your chest so the little scar isn't even too visable.
They told me also, that once I started treatment I would be on it the rest of my life, if it worked. I wouldn't stop it now unless I absolutely had to!
Keep me posted.

Love, Penny

beach_tiglet · 05-04-2004, 07:29 PM

That's what my primary care physician was asking about when he was asking if they were planning to put in a port and was asking how my veins were. He probably had bad memories of my last hospital stay even though he didn't admit me.

I'm still reading the website. It's already answered some big questions about pooled donors though. I didn't realize that they waited two months and retested prior to using donated blood. I didn't realize that I am supposed to react to this tetanus(sp?) vaccine either since I have a subclass deficiency. At least I won't be in shock when the test results come back in two weeks.

Thanks for everything

Dana