Welcome Jon,

I'm not sure about a second opinion, your numbers tell a pretty clear story. On the tylenol, I get two before treatment and it helps because I get a little feverish and lower back pain during the infusion. I've only had a handful of treatments, but due to the time it takes to reconsitute the stuff, I now have them give me the tylenol right as they start the infusion instead of right when they start the IV. I've waited up to two and a half hours for the meds and by the time they finish four hours later the tylenol isn't as effective.

On the Benadryl, I take both the IV and the pills. My IgA level is 0, so I react even to the trace amounts of IgA in the mix and the Benadryl helps.

As for the effectiveness of IVIG, my experience is that I've had a lot of symptoms from them, but I haven't had an infection since I started last October. I haven't felt great the whole time, I'm still adjusting, but I do feel more protected.

By the way, there are a lot of people on here with a lot of CVID and IVIG experience, so if you don't get an answer that makes sense, keep asking questions? It's a lot to wrestle with and you don't have to do it alone.

Be well...

Fred

I just started IVIG treatments myself, and I can't take Tylenol due to a family history of kidney problems so I take Aleve for the fever instead.

I receive 75mg of IV benedril before they start the IVIG which burns, and makes me tired which helps me relax. My significant other is currently sick, which would normally make me sick right away but I haven't gotten anything nearly as bad as I normally would so I think that it is working for me.

The IVIG is uncomfortable and I ended up with Phlabitus of the vein which is a vein infection after my first one so they flush my vein very quickly with the remainder of the D5 (suger saline solution) that they mix the IVIG with to make sure it doesn't happen again and it has worked so far.

I agree that your numbers are what they are, and the blood tests I have been told are very accurate.

I hope this helped and good luck. :)

it never hurts to get another opinion.... i have been sick my entire life so i have no experience with being well and living with cvid. i have been receiving IVIG for 4 yrs now. i used to stay on antibotics constantly, i have had so many ear infections over the yrs that i have hearing loss, my lung infections haveleft me with scar tissue i have ear tubes and i am 45 yrs old. since starting the IVIG, i am on antibotics less often. i would like to report that i stay well, but due to the damage that occurred over the years, i continue to get sick. i was recently retired as a teacher due to the exposure to germs. i just came out of a long battle with pluerisy that my family ,doctors and i did not think i would make it through. after 3 mths i am now on the rd to recovery. my point in telling this is it is very important to avoid as many infections as possible to minimize the damage and scar tissue. not sure this helps, just my ramblings.....

My first question is why did he test your immune globulins/? It is not a normal test for an physical examination. Was there anything in your history that may have gave him a suspicion?

Since your say you are not having "a history of reoccurring infections or illnesses", In my opinion it's a toss up if you should start IViG or wait?

I have been on IViG for 28 years and my 20-year-old son has been on for 5. My 18-yer-old daughter has been diagnosed with CVID, but has not had serious infections. She has not started infusions. Her immunologist agreed that it was a toss-up and we let her make the decision with the understanding that if she started to develop infection she would start regular IViG. So far she is doing fine. She is speeding the year in Boston and the immunologist who is following her there though it was very unusual, that may be an understatement, that she was not on IViG. So, like I said it is a toss up, even among the experts.

A side note, we did give her infusions when she travel abroad, Last year she went to China on a high school trip. Since she was going to be in very rural parts of China and because of her CVID most vaccinations do not work. We were most concerned with Hepatitis A & B, so we gave her several infusions before she left and one when she returned. The same thing when she was a fellow at a European summer camp in Hungary last year.

Good luck, the only other advice I offer is to make sure your physician tests for your reaction to the pneumonia vaccine before you start any IViG. It will be very useful if your insane carrier ever want to challenge if the infusions are medically necessary and it is part of the normal diagnosis for CVID.

Hello Jon, and welcome to the boards.

I understand how difficult it can be to get a diagnosis out of the blue. Hell, I was a person that was glad to find out what was nearly killing me, but even then once the doctor said 'you have cvid' I sort of mentally checked out. Nothing much was sinking in.

The infusions are different for everyone it seems. You might sail through the entire thing flawlessly. You are still young and without infections, so you must be strong. My guess is that you will do well.

Interestingly, people are usually diagnosed with CVID either when they are very young, or in the 3rd to 4th decade of life. I wasn't diagnosed until I was 59 after suffering years of illness. The fact that you have been healthy gives you a leg up on your total prognosis. At this point you should feel fairly confident that since this was found before your illnesses would have reved up your immune system will be in better shape to do battle.

Speaking personally, the treatments are a non event. When I have had trouble is the days after the actual infusion. One time I ended up in the hospital for a week. Following that disaster we decided to slow down my rate of infusion and that seemed to have helped.
It may take time, but working with your nurse and doctor, I'm sure that you will work things out to your best advantage.

This board has allot of good people who have had lots of experience with CVID. Don't hesitate to ask any question here. Initially I learned allot here, and still to this day find helpful information and have spoken with some amazing people.

Keep us posted on your progress.

Thanks for all the comments, suggestions, and wishes thus far. I'm sure I will be on the site constantly for any questions or concerns that I may have. To 'markincle', I did get the pneumonia vaccine and there was no response. My original blood tests showed high levels of protein, so that is when they decided to run additional blood tests and therefore the current diagnosis. Thanks again to you all and God Bless.