Hi Marilyn,

It's easy to get overwhelmed and scared by the lists of side effects and problems. If you are healthy, and don't get infections frequently and aren't exhausted all the time, then it might be considering not getting treated at this time. That's something you should discuss with your doctor and your family.

However; if you are getting infections and exhausted all the time, then IVIG will help you. I've only been getting treatments for 8 months, and I admit there have been times when I've wondered whether it's helping, but I do know that I was on a rapid downhill slide before I started on the IVIG, and I was barely able to go more than a few days without antibiotics. Since starting treatment I have had only about 4 infections requiring antibiotics. Yes, I've had times when I've felt even more exhausted as a side effect, and I've had rashes and breathing problems and aches and pains--but I've also been able to go swimming and go to baseball games and start exercising--things that I haven't had the energy for or been healthy enough to do without it!

The decision is yours (of course), but please weigh both sides carefully before deciding against treatment. Also consider different methods or brands. There are some brands that have nearly 0 IgA, made specifically for people like you. In addition, the subcutaneous (Sub-Q) form of treatment is known to have fewer side effects than IVIG, so that is another option to take into account before making a decision.

Best of luck to you, and please feel free to ask questions. :)

Hi Marilyn, IVIG isn't all that bad. The alternative is being sick non-stop for 1 weekend of discomfort. As PB said, there are IVIG's that have no IgA in them. Have your doc do the blood test to see if you are....shoot..MARK WHATS' IT CALLED? It's not an allergy but if you have this then you have to have IVIG with no IgA. I have

at one point i stopped researching before i had my 1 st IVIg i decided too much info was too scarey at that time. i needed to go a litlle slower. it is like ripping a bandaide... i needed to rip the first few a little at a time to get through it.

you will be fine...

Marilyn,
You should do what your body is telling you. Low IgG is not a problem in and of itself. It's the infection.
If you have having 3 or four infections a year and they are controlled with antibiotics, my docs and our opinion, is that you don't need IViG. If you have a serious loss of energy, IViG is worth a try. If you do not respond to vaccinations and are going to rural China take a couple IViG treatments to build you acquired immunity.
If none of the are true, I'd delay treatment until you need it.
You mentioned that your IgA was not measurable. IViG will not help that in any way, the drugs are replaying IgG and many are formulated specifically to reduce their IgA content.

If you have low IgA, you physician should do a anti IgA teat to see if you body makes antibodies to IgA, It is am important test for patients who have low IgA (about 25% of the normal population,)
There are several drugs with log IgA, Gammagard S/D and Provigin. Baxter make an even lower IgA product, but it is in very short supply and needs to be specifically requested. It is made from donors who hare healthy with naturally low IgA

ANTI IGA TEST ! GAWD thank you Mark...I need to staple it to my forehead. I even had the test and can't remember lmao!

Marilyn: I too, have non-existent Iga, I have been receiving IVIG infusion since 1995 (on and off). I never "researched" this disorder, just followed my doctors instructions, I am on Gammaguard. I have NEVER had a reaction to the infusion, except a couple weeks ago, my chest got a little tight, and I sorta had an anxiety attack, so I think it was more "mental" than physical. Like I have said before on this site, I have NEVER had adverse effects due to the infusion, no flu-like symptoms, no fatigue, no aches and pains, no headaches, etc. BUT alot of people on here have those effects but it is either due to the fact they are on the wrong medicine, or maybe they need to switch to the sub-q form. Anyway, don't be fearful, your going to be o.k. Sometimes when you OVER EDUCATE yourself about something before the actual treatment you go in with a lot of unnecessary fears and you will get yourself worked up. Your doctor should be with you for the first infusion, they will pre-medicate you and you should be well hydrated and go in with a peaceful mind. Just view it at as how lucky you are to now have a diagnosis and it is treatable. I agree with Mark though, depending on how sick you get and how many antibiotics you are on throughout the year, maybe you don't really need it. But then I could argue that case too, because I went like 2 years without getting it with just a couple of infections and then wham I picked up pneumonia in all 4 lobes of the lung and ended up in the hospital for a week with Sepsis! Almost took a permanent vacation. So who knows, would I have not gotten it if I had been on IVIG? Probably not, so the trouble of doing it (going in once a month) far outweighs the risk of getting something REALLY bad. Your going to be o.k. Keep posting and asking questions.

Everyone is different on how much they want to know. Some only want a high level overview. I personally want to know EVERYTHING I can. I firmly believe you need to be your best advocate. If you are getting scared reading, slow down :) I say that lovingly I promise. Most of us here have been doing this awhile.

Also your doc may not be with you the first time. I've never had a doc with me. I would recommend having a friend or family member come with tho, helps keep your mind off of it. ((hugs))

I typically like all the info possible. My concern is I read that those with no IgA have a much greater chance of an alleric reaction and I don't think my Dr. Has done the test you guys recommended to see. I am to get Previgen which has

I don't think they have a much greater chance of having an allergic reaction. Actually I think its not that common. But better safe. Call doc and ask him to run the Anti IgA blood test asap. Results take awhile.

I also like to know as much as possible about what's going on with me. There have been too many doctors in my lifetime who have completely overlooked things that they shouldn't have. I've also come to the realization that doctors are human, and they make mistakes...also they often forget to ask specifics about symptoms, and if you don't know that something is a symptom, how can you confirm something for them? (Does that makes sense?)

:)

I do believe that you do have a greater risk of an allergic reaction to IVIG IF you aren't given the right IG. I am one of the rare 25% or so of CVID patients that doesn't have any IGA's. When I first started IVIG, I was given the kind that has the 'full strength' IGA in it, and I had AWFUL allergic reactions. Then I found a new dr. who had a better understanding of CVID and put me on Gammagard S/D. Now, the only side effects I have are slight body aches and pains during infusion (under control with Tylenol), and slight headache. Other than that, I can't complain. I used to dread my IVIG days, now I don't mind them at all.