I'm a 48-year-old male. I have always been a relatively healthy person with fairly high energy, so it was a surprise to both me and my doctor when I was diagnosed with CVID. (My sister just learned that she has it, too, and that's why I was tested for it.)

Even though I have no symptoms (other than the fact that it takes me 2 weeks or more to fight off a common cold), my immunologist has recommended that I start IVIG treatments to help my body fight off possible bronchial infections in the future. He claims that there is no risk, but I am somewhat apprehensive to undertake such "drastic measures" without learning more.

Any advice would be appreciated:
* Is there any discomfort associated with IVIG?
* How can I expect to feel after receiving IVIG?
* Should I expect to be able to fight off common colds more quickly?
* Are there any benefits or risks?
* Is there anything else I should know?

Thank you very much!

I battled chronic colds, ear infections, sinus infections, my whole life and yes it takes me weeks to get over a little cold. Over the past two years, my system started reacting to my environment I was working in (mold and asbestos) and started slowly shutting down. I had recurring sinus infections, bronchitis, ear infections, rashes, pneumonia, and developed asthma for the first time in my life. I am only 33 and my doctors couldn't figure out what was wrong with me as my health was decreasing.

Apparantly, this could have been something I had my whole life and the older you get, the more apparent IGG defiency's show up. Environments that challenge the immune system can also trigger the symptoms which makes the immune system have to fight harder. This is what signalled my doctors with a reg flag.

I went to a specialist (infectious disease) and after a battery of tests, she discovered that I do have an IGG 1 Subclass defiency. Because of her knowledge of infusion treatments (her office has an infusion suite for people like me) she worked with my insurance and they agreed to pay 100% as this was our last resort.
I just completed my 5th IVIG infusion and have not been sick since receiving treatments. In 5 months, I have not been on one antibiotic and feeling wonderful! Because my recent blood work showed me to have levels that a healthy person should have (that was not the case before IVIG infusion , we are going to continue IVIG infusion as my doctor feels that if we stop I might relapse.

As far as side effects go, there are some but it is worth it. The infusion treatments are based upon weight and so I am 125lbs and only in the infusion suite for 1 1/2 hours. The suites I visit have recliners, flat screen tv's, wireless internet for laptops, cable, snacks, etc. The side effects the first two infusions were flu like symptoms for a couple of days after but not as bad as the flu. Headaches are common but they are not bad. You will feel a headache when you start each infusion, but the nurses will give you Tylenol to help with it. The first two infusions I did, they said to take Extra Strength Tylenol for the day of treatment and a couple of days after and then the achiness goes away. I do feel a little nausea a few days after treatment, but it is not that bad. Now after the 5th infusion treatment (I go once a month for a year and then will take a break and see how I do and then pick it back up again) I do get a little headache when they first hook me up to the infusion machine, but once they give you Tylenol, you do feel better. After my 5th IVIG infusion treatment this week, I went shopping and didn't feel very bad.

The only thing that does bother me is that with all of the liquid infusion they give you, you do have to urinate alot it seems the day of infusion treatment and the day after. Something with the infusion treatment and your kidneys flushing it out. The only other thing is that if you have any heart problems, the infusion treatments tend to make the heart race more than usual the day of infusions and a couple of days after but it is not bad.

I would highly recommend IVIG infusion treatments as before IVIG infusion treatments I slept alot from being sick and always felt bad when the seasons changed. Now, I don't take naps, haven't been sick once in 5 months and have been able to stop my asthma medication and daily allergy medication.

Good luck!

This address will take you to "Treatment Experiences" [www.primaryimmune.org]
This is a great organization.

Granddaughter has been getting IVIG infusion since she was 6. She is now 13. At first had a problem with reaction. Gets Motrin and Phenagran{sp?} and now has no problem. Without it she has bad reactions. Once started IVIG her bronchial problems got less and less and no more spending month in bed with bronchitis and pneumonia. Saw a huge difference. She has it done every 4 weeks and now gets in done on weekends, no more missing school. With pre-meds she has no problem and it doesn't bother her at all. Only downfall...makes her tired and sleeps through the infusion. We sit and wait!!! Don't hesitate, it will make you feel better.

Hi I was diagnosed with severe CVID 8,5 years ago. I have had semi monthly and now recent monthly ivig treatments every month for the past 8 years. Generally it does not hurt, only the initial needle being upt in for the iv pump. I find that usually for a week before and a week after my treatment ( I get 10 grams), that usually takes 4 hours to administer, I feel exhausted and pretty weak. After so many years of getting it done, I actually started taking mild antidepressants and I find it helps me feel better after the treatment. I was getting so depressed with having to spend 8 years of my life, 4 hours a month in a cancer center.

The good news is that it has been helping me tremendously. Before my initial treatment I had the immune system of the 'bubble boy;' I have been sick all of my life, and kept getting worse before the treatments began. My IGG serum level now is around 500. Normal amounts are from 790-1600. So it is a little depressing that even after all this time, I dont seem to get 100% better, but its more like 50.

It is something that you should do. Let me know how you are feeling. Best of wishes and luck!

I just had my first IVG treatment 10 days ago. I did not have any adverse effects after the treatment. I had some nausea during the treatment, but it was slight. Nothing that I couldn't handle.

I have had problems for years with chronic infections, sinus problems, upper respitatory infections, bronchitis, etc... The older I get, the longer it takes to recover from the infections and the stronger antibotics that it takes to knock out the infections. As I have asthma as well, the chronic infections have taken such a toll on my lungs.

I am hoping that IVG will help me feel better. I really think that it will and I would certaintly give it a chance if I were you.

Ginger, 34, CVID, MD

Lynn,

I would check with your immunologist about your dosage, as your numbers are still very low. I’m a 30 year old male and was diagnosed at the age of 6 and have been receiving IVIG treatments ever since. I currently receive 30 grams every three weeks via IV. I have my levels checked every 6 months and they average around 1180 to 1200. It sounds like you might need an increase of your dosage. I would also inquire about Sub-q if the time and commute to the cancer center were that much of a burden on you. I personally have never tried it as I don’t have severe reactions to the IVIG therapy and don’t really have a reason to change at this point. The dosage is highly based on your weight so I would speak with your doctor about increasing the same. Josh

I take 60 grams every 4 weeks. Rather than "commuting" to the cancer center for your infusions, have you thought about having a nurse come to your home? I've been infusing at home for over 20 years and couldn't imagine a more convenient way to go. My 60-gram infusion takes about 2 hours. The thought of sub-q every week with multiple sites has no appeal to me. If anyone tolerates IViG well, I can’t see a reason to go the sub-q route.

Mark,

How old are you? At what age were you diagnosed? Do you get sick often?

Josh

I'm a 42 year old female, who may need to have IVIG. I have long suffered from chronic sinus infections (had three surgeries, most recently in Dec.) that respond to antibiotics but it never really goes away. Currently I am on an antifungal rinse for my sinuses and they are better. My ENT asked my allergist/immunologist to run levels. I had them two years ago and all was good. My allergist/immunologist ran the bloodwork and my immunoglobulin levels were all in the normal range but my G level was toward the low end of normal. My others were all good. My tetanus and pneumovax vaccine levels were low but not totally absent. He repeated my vaccines and in 30 days we will retest those levels and proceed from there. He said he may go ahead and treat me with IGg. I am absolutely terrified. I can't eat, I can't sleep...Any advice? I'm scared out of my mind and don't know how to cope. My husband told me today he is going to block the computer at home so that I can't log on and read about CVID. I'm making myself crazy. I'm crying all the time. Some of the things I've read are making me so nervous and plain scared. In the midst of all of this I'm trying to teach my students...

How do you cope? I would appreciate any input. Thanks!

I am 60 years old and was diagnosed in 1981, 29 years ago. I honestly think I am no less health than the normal population CVID or no CVID.

?! Your physician's rationale does not sound right to me. You don't take Immune Globulin "just in case". The common cold normally takes 2 and even three weeks to run its course. Have you had any labwork to support taking this treatment? Have you had a quantative immune level assay? Are you taking this immune globulin in his office? You know that you can take it in the comfort of your home so you do not have to get out in bad weather and where you can be comfortable. There are many qualified infusion nurses working for pharmacies and nursing agencies who are trained for this. Sorry, with the information you have given, this doesn't sound right. What dose is he going to give you? Make sure you have a copy of your infusions and amount of IVIG you recieve for your records.