CVID and IVIG treatments

[psalm139]

Hi. I was recently diagnosed w/ CVID. Have been recommended to have IVIG, but only have infections (sinus, bronchitis and/or UTI) about 6 times a year, otherwise feel pretty good most of the time.
Would anyone be willing to tell me some of the side effects they have personally experienced w/ the IVIG? I was told really needed to be on this by docs, but don't think I am ready for it.
Also have pretty extreme pain in joints, and GI issues. Some literature states IVIG will help with these problems, and others state IVIG will not help. What is your experience? Thank you!

[glowing]

Hi.
Welcome to the forum. I have been receiving treatment for a relatively short time, two years in August. I started with ivig for just over a year and now I'm doing subq at home. I have enjoyed far better health with less chest and sinus infections. The occasional break-through infections that I had in the beginning of treatment were far less severe. I was told by many people that if we're offered the treatment it's because we need it. After more than ten years of being ill I'm really pleased that I finally got a diagnoses.

It's all very frightening at first but I sure you'll read many success stories on here. There are others on the forum who know far more of the technical side of things and can give answers to most questions.
Keep popping in and try to keep well.

Gloria

[john]

Hi and welcome!
The problem with CVID is that if left untreated it will only get worse, and by worse I mean that the infections you do get will cause damage to your lungs and sinus etc that will be irreversible, and that damage you will have to live with all your life even if you do eventually have IVIG.
Also remember that the IVIG treatment is so expensive that it is only offered to people who really need it and can benefit from it, so your immunologist has thought very carefully about offering it to you.
In my opinion you should seriously think about trying it!
Joint pains, diarrhoea and fatigue are very common amongst CVID patients, I have all three and have had since before diagnosis many years ago. They 're mainly treatable with other medications, I don't recall meeting anyone who says they disappeared with IVIG.
IVIG will certainly reduce your infection rate, and antibiotic treatment given at the right times by your immunologist will make any breakthrough infections you do get shorter and less damaging.
Let us know if there is anything else we can help you with, and good luck with your decision!!

[s162216]

Hi,

Having 6 infections a year may not sound like a lot, but in reality that is more than you should be having, in those with a normal immune system 2 or at the max 3 infections a year would be the most that they should have. I was similar to you, I only had what I though was a few infections a year (5) but after it was found I only had an IgG level of 2.6 they started me on IVIG pretty much immediately and since then in the past 3 years I've had only about 5 infections compared to probably 15 that I would have had before.
As John says, immunoglobulin is extremely expensive and its supply limited (as its obtained from blood donations) so your doctor will only offer it to you if you really need it.

If you have any concerns/problems or just need some support then we're all here to help.

Sam

[psalm139]

Hello, again. Thank you all so much for your kind and warm responses. I appreciate your taking the time to share your experiences. I am still not on the IVIG treatments. I have been over 5 months now without a cold or sinus infection, and they are both really going around at work. Have been using a nasal rinse with Xylitol and Turmeric (the spice, believe it or not) with warm filtered water. Wanted to try it for awhile before posting it here. I think it is working well for prevention; anyway this is the longest I have ever gone without a sinus infection in my life. Also have been taking probiotics (High delivery Acidophilus and Saccharomyces Boulardii) for the GI symptoms. It is very interesting, but the numbers for all the Igs are extremely low-- IgG is 15, IgM <5, IgE <2 and IgA <1. The labs were run 3 separate times to make sure, weeks and months apart. I was told the T cells are very strong! Chest Xrays are good with just a little atelectasis at the base on one side. Guess I just feel the need to tell someone who understands, and I thank you so much for listening ")

I am grateful to hear that your treatments are all going well for each of you. Have you found something that helps you with prevention?

Thanks again, Gloria, John and Sam; look forward to hearing from you again. Be well! Veronica

[liverbird]

Hi, I only typically get 1 ear infection and 1 or 2 sinus infections a year. And I didn't get the same bronchitis my girlfriend got when we traveled together. So I know exactly how you feel when you think you don't need it. But my IGG is so low it's technically undetectable. We need the IVIG therapy! As others have said this will be preventative so we don't get worse. We are lucky to have diagnosed with it so early on and should appreciate this. I also have had GI issues most of my life, which I now control via diet.

I got my first IVIG treatment yesterday. I had an initial reaction after 15 minutes so we stopped it and they gave me some meds to help me and prevent any further reactions. After that we continued and I was good for the rest of the treatment. I'm excited to see how I feel in the next few days because I'm told I should possibly feel better than what I've known till now!

[elained]

Hi liverbird,

One point I would make is that those with CVID have a 25% chance of developing auto immune conditions. As the proud owner of more than two autoimmune conditions, I can definitely say that if you can avoid them, DO! My CVID wasn't identified until I was 69, and I didn't start SubQ until I was past 71. Like you, liverbird, I haven't had the life threatening infections that so many here have experienced. And I wondered 'why bother?" BUT, my infections started increasing recently, as did my autoimmune symptoms and the flares of inflammation that go with autoimmune conditions.

My Immunologist hopes that not only will I avoid life threatening infections, but my autoimmune conditions may calm down once my immune system isn't so stressed by being inadequate. Yes, an inadequate immune system that doesn't protect me, but attack my own body.....talk about ironic.

My MOST IMPORTANT point for you, liverbird, is that perhaps by starting IVIG early, you may forestall developing the autoimmune conditions that make my life so unpleasant. I don't KNOW that, of course. I wonder if any research has been done on those who started IVIG early in life. What percentage of them go on to develop autoimmune conditions. If it is less than the 25%, then that might show that IVIG helps avoid autoimmune conditions.

Only about 5% of the population develops autoimmune conditions, and yet 25% of those with CVID, develop them. It would be wonderful if the IVIG (or Sub Cut) prevented later development of autoimmune conditions.

ANYWAY,so glad to join this group.

Elaine

[psalm139]

Hi, Elaine. You Do Not look 71! Wow, you are beautiful. Anyway, interestingly, I acquired Vitiligo when I was in my late teens, long before being diagnosed with CVID at 52. Looking back at my health history, think I have had it my whole life, just missed diagnosis. The one statement I made to a particularly astute and listening 78 year old MD was, everytime I get a cold, it turns into a sinus infection! He ordered testing immediately, and when finally went for tests the diagnosis was confirmed. You are right, it would be interesting to have studies to see if autoimmune diseases were fewer with the treatments.

Thank you, also, liverbird for your responses. I just met with our insurance rep, and I don't know how it is where you are, but living in a small town, I would likely need to travel 5 hours, the treatments would be around $20,000.00 a month, and feeling so very well, I will wait awhile longer. We may be moving to a bigger city so will revisit it then. I am glad for you that your reactions were taken care of, and that you were able to tolerate the treatment. Looking forward to hearing how you are doing in the future with hopes you will do great!
Veronica