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

Hi!
I've been taking IVIG for several months. I can tell you what I know, and also refer you to www.primaryimmune.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

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

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

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

There is an awful lot to comprehend when it comes to immune problems and their treatment. I'm glad that you find the site helpful. Also glad that I have been able to give you some insights.
Where do you live? Are you near a major medical center where there is at least one immunologist? I live in Jacksonville, NC and have to drive about 3 hours to get to the University of North Carolina's Chapel Hill Hospital. It's worth the drive though. I was just there with my husb today. He sees a Neurologist there that deals with special neuropathies. We both go back in a month for more tests and follow-ups......that will be a 2 day trip!
Keep me posted on how you are doing!
Love, Penny

I'm near Emory University. However, everyone I've talked to has mentioned the same name for immunologist/infectious disease doctor, and he's not affiliated with the university. I used him a couple of years ago and really liked him. My childhood allergist/immunologist who just does allergies now was the one who insisted there was something wrong, and pretty much knew what it was. I drive 5 hours just to continue to see him (he moved, not me). Anyway, he insisted that I follow up with an immunologist since he doesn't do it anymore, so I did. In the meantime, he even checked up on this doctor and was really impressed with his credentials and comfortable with the correspondance he has had with him. So all my favorite doctors that I know and trust all use the same doctor (really unusual for them all to say the same name when I ask). He is really good at explaining things and answering my questions, when I can come up with some. My problem lately is that I've been so scared and overwhelmed that I can't seem to put my questions into words. I managed to have a list the last time I saw him, but I'm still really nervous about this whole thing. Talking with you and reading the website has helped though.

I am doing ok. Still hoarse from the URI, but haven't missed any work. I go back for blood work Monday and follow-up two weeks later. I can't imagine he'll be thrilled I still have the URI, but school is almost out, and then I can rest. TMJ is driving me more crazy than the immune system at this point, so there is something to be said for that, at least it's holding it's own.

How was the trip to Chapel Hill? Our neurologist is 15 minutes away. My husband and I see the same one. He is wonderful. :) I'm not sure what we'd do without him. Hope your trip went well.

Take care, Dana

Penny, I'm back. Haven't seen any posts by you recently. Are you ok? Dana

Sorry for the delay in getting back with you. It has been a hectic last couple of wks for me. Have been having lots of problems with diarrhea and skin infections of late. I see the Immunologist at UNC-Chapel Hill next Thurs. Don't know that he can do much.....I think that is just how this stuff goes.
My husband is having more testing done the next day re his neuropathies stuff (it's getting worse) so we will stay overnight there. It is about a 3 hr drive from home. I may take myself to a museum or something like that while he is "occupied". It has been so hot here, though, I may just have to hang out by the pool till check out time though. The heat really can cause problems with my MS, so I have to be careful.
Hope you are doing OK. Penny

Hi to answer your question about pre-medication, I have been recieving IGIV for 16 years now, I always pre-med with benadryl and tylenol and have only had one reaction which was I got really flush. Hope that helps.

Jerimy

Thanks Jerimy, they're back to the drawing board with me...mixed tests results...IgG subclasses normal, but didn't respond to pnuemovax vaccine but did to tetanus. I think they're sending me to a research hospital to determine what is up since that isn't what they expected, and they aren't comfortable proceeding with IVIG. They do agree something is wrong because of all of the infections, the types of infections and how long it takes to get over them, they just aren't sure what exactly and how to justify treating it with IVIG. I'm BUMMED...