Common Variable Immunodeficiency Support Group

Treatments sound VERY scary. Not treating can be just as scary. The best we can do here is share our personal experiences.

First, welcome to the group. Whic part of the treatments is worrying you the most? The fact its a blood product or the reactions? This is an absolutely AH-MAZING treatment, life changing for me. I was on the verge of losing my job, single mom sick since the day my baby was born (8 years ago), they actually had me in the computer as drug seeking at my docs office because I had been on cough meds every month for like 5 years. The treatments changed my life. I hardly ever get sick anymore. The chances of me getting a life threatening illness are far more realistic than getting a bad batch IgG. I work full time and care for my child with very little help. Was it easy getting here? NO. I will not lie. I had not yet found this forum and my docs had ZERO experience (although they acted like they did). At one point they refused to treat me...dangled the carrot of "treatment" in front of me then ripped it away. Then I had horrid reactions. AGAIN. I had not found this group yet and was flailing around on the internet posting on websites begging for advice. And I got it from a wonderful person who is also on here. Had I known then what I know now I am confident I would not have suffered from the infusions. Now, I do subq and do not lose any time to "side effects". I infuse while cooking, cleaning, watching movies and I go on living. If you absolutely cannot mentally make the choice to infuse or not to infuse...stay on the antibiotics for awhile if you are doing good on them. Take your time coming to your decision. It will get better...

Thank you so much for your reply. I cannot believe that I stumbled upon this site in a moment of anxiety, nor can I believe what you have been through. I am so happy to hear that you happily "soldier on." I was diagnosed in September of 2011. Right now I have no other complicating health issues. My red flag was a sinus infection that would not go away. Finally, I went to see an allergist who put me through a battery of tests. She found the IGG2 deficiency and my allergies to dust mites and mold. I have been on antibiotics and now since last summer, and in the last 8 months I have continued to improve a great deal. I have gained weight and the allergy shots seem to be helping. My doctor was hoping we could reduce infection by reducing my sensitivity to the offending elements. Once in a while I will have a little yellow in my nasal discharge, but it goes away. I know that eventually it might not, and I am trying to brace myself for the treatment. I am a full time teacher in a college prep program in a public school, I ride horses, I sing and play. So what am I worried about? I guess side effects AND the fact that it is a blood product AND I am afraid NOT to take the treatment. When do I know it's right to do it.? It didn't help that another teacher at my school who has absolutely NO immunity had the treatments and ended up in the hospital from an adverse reaction. It was horrible for her, and she has been my only primary source. My husband is NOT in favor of the treatment though he is extremely supportive of me. The more I read on the Internet, the more frightened I become. That is what led me to seek out a support group. The Internet - yes, a blessing and a curse. Anyway, thanks for your input, and anything else you could share would be extremely appreciated. For example, the subcutaneous treatment, does a nurse stay with you the first time to make sure you don't react? How does all of that work when you start? Again, xoxoxo for replying in such an upbeat way.

Mfgs recommend starting on IVIG. There are tricks of the trade that most docs do not know, so you can get prepared and be proactive with the IVIG. MANY people have IVIG with no effects, but again I always recommend being pro-active. The IGG....10's of thousands of people use it every day. It is a very safe product. Little children even do the treatments :) I too had horrid reactions and a very VERY uneducated doctor that literally told me I was having an anaphylactic reaction (I was not) and stopped all treatment. I cried, begged and even suggested 3 other alternatives. She was more worried about her than me. If you have an experienced doctor - I'm going to be very frank here - it does not matter how much you like your doctor - if they do not have experience with Primary Immune Deficiencies - you could be in trouble. That is my PERSONAL experience. Anyways, you can be proactive and prevent a lot of the side effects. Subq, so easy, tiny little needles. Nurse comes to you a couple of times until you are comfortable doing it on your own. I have a hmo lol that being said I learned in an allergy office and there was no 800 # to call when I ran into problems. Thank God for this group haha I posted lots of freak outs that really turned out to be nothing :)

When to choose...sigh thats different for everyone. Most people are so sick of being sick they are desperate to get treatment. Learn what you can, ask tons of questions and work with your doctor. Visit sites like www.primaryimmune.org and immunedisease.com. If you need a referral to a doc experienced in PIDD, contact primaryimmune.org and they will help. :)

> Scared to have the infusions. Scared not to have them.

I was in your position a month ago, and I hope that I can allay your fears. I had my first infusion about 26 days ago, and my next infusion is scheduled for this coming Wednesday.

I held off on IgG treatment for a while. I had been "sitting on" my diagnosis for a few months, and I had to wrap my head around the fact that, for a while, I was feeling great. I wondered why I should take "the risk" when I might stay healthy? (Here, a lot of "the risk" boiled down to my concerns over it being a blood product, and also the challenge of being injected once a month, and the time it would require, and all that jazz.)

This is a natural reaction, and my doctor informed me that most CVID patients try to reason it out in this way. He also said that, in his experience, as time wears on, you'll get sicker (with fewer bouts of health), and that the lung damage will eventually become irreversible. In the meantime, I got sick again, with all the lack of energy and pneumonia and mucous and all that stuff. I'm a pretty fit 34 year old who had a hard time conjuring up the energy to go to work because of this illness, and this, in part, drove my desire to get healthy.

At the same time, my wife absolutely supported me in taking the treatment. She recognized that, with 1 child (and another on the way), I needed to return to health in order to enjoy my life and the life of my family. I also reasoned out that my perceived risk about infection from a pooled blood product was largely misplaced; the risk is very low (in fact, I face a much higher risk of injury or death just driving a car each day).

With my family -- and myself -- in mind, I took the plunge and started IVIG. Here's what I found:

(1) There was almost no pain or bruising from the injection itself. The injection was done in a comfy lounge-like area with wifi internet and free juice. :) I'm a guy, so maybe some people would think I'm lame for saying it, but I was worried about being injected for hours on end ... and in the end, it was nothing.

(2) Since my first injection, my sinusitis and cough have almost completely disappeared. I feel *amazing*! I can stay up late at night and not feel "dead" the next morning. (Before IVIG, if I stayed up much past 10pm, I'd almost certainly wake up with a sore chest and/or cough in the morning.) I am not coughing up green stuff, and I am operating more efficiently than ever before. The change in my health has been so great that I'm looking forward to the next injection.

(3) My first injection gave me a brutal headache which lasted for 2 days. The headache stems from dehydration, interestingly enough. I'm not too worried, because I plan to hydrate a LOT more this time, and ask the nurses to take it a bit slower. (46g in 1.5 hours was a bit fast.)


It's daunting -- and reasonable -- to fear the unknown. The IVIG treatment will extend your life and improve its quality. Having felt better than I have in years, and after only one injection (!), my only wish (in retrospect) is that I had been diagnosed earlier.


> I guess side effects AND the fact that it is a blood product
> AND I am afraid NOT to take the treatment.

It is very rare to suffer serious side-effects. The most common is headache, which I have been advised (by the research team at Sick Kid's hospital in Toronto) is due to dehydration. This means -- the headache can be overcome. :) Drink lots the day before, during, and after treatment, and use a slower injection rate.

Let's talk risk for a moment. IgG *is* derived from blood product, and there *is* a very remote chance that you could get sick from this product. But, in the words of Dr. Sassoon Levi (a researcher at Sick Kid's in Toronto), in no time during his 32 year career has he EVER heard of someone becoming sick due to IgG treatment. Even during the Hepatitis C scare of 1992 (in the Canadian blood supply), no IgG patients are believed to have been infected. The filtering technology is believed to be effective at removing prions as well as all known viruses, and so far, it has an amazingly safe track record.

Let's also talk about risk from the other side of the coin, and let's be clinical for a moment. The average rate of mortality from CVID, due to lung damage, is about 30% within 20 years of diagnosis for those patients who do NOT receive treatment. Modern treatment with IgG has lowered that rate to ~5% (and keep in mind that this is averaged over the whole population -- young and old people alike). This is fantastic news, because it means that, with this treatment, you stand a very good chance of living a full and happy life.


> It didn't help that another teacher at my school who
> has absolutely NO immunity had the treatments and
> ended up in the hospital from an adverse reaction.

Sorry to hear that. But don't get too caught up in one person's experience. It's hard to know why that person had an adverse reaction, or to extrapolate if it would happen to you. The truth is, serious adverse reactions are rare.


> My husband is NOT in favor of the treatment

I admit, I don't understand this. Perhaps he hopes that you'll get better on your own. Maybe he thinks that it's too risky. I would encourage you both to sit and talk about these factors, and try to reason out the right path for your family. The choice is ultimately yours, and you don't have to start treatment "right away"; I sat on it for a few months and "let it digest". It ultimately took me a final bout of pneumonia before I went ahead and started it ... and I'm not looking back. :)

Again, very comforting advice. Thank you so much. My doctor seems to know what she is doing. She diagnosed me so quickly. And the website you suggested is the one she also recommended. My last appointment was in May, and I was asking questions but I didn't feel as if she was as receptive as my previous meetings. It was at the end of the day and she was just getting ready to leave on a vacation to get married and honeymoon in Italy. I just figured her mind was elsewhere. :-) I actually have selective antibody deficiency, and of course, the IVIG treatment, according to that website is not as clear cut. There are so many variations on PID. I guess that is truly why we opted to try the antibiotic treatment first. I have taken to explaining it like the armed forces. Everyone has the army, the navy, special forces, marines, etc. to fight off infection. In my case, the marines are M.I.A. I have wondered about re-testing as I did find information on one reputable site which stated that these levels can vary, and I also wondered about seeking out someone who specializes in immune deficiencies. No matter what I will ask for a re-test before starting the IVIG. When all of this happened, I had the absolute worst year at work - highly stressful environment, my brother unexpectedly died, my diet was horrible, and my allergies became unmanageable. My IGE levels were extremely elevated. With that being said, my doctor has said that IGG does return in children, but in adults, not. This is validated by the Internet, however, I am hoping she will humor me. :-) As previously stated, the Internet is a valuable tool but it can also be overwhelming. :-) I admire you so much for your attitude --- and all this AND a single parent AND working. Amazing may describe the treatment, however, I would apply the word to you as well. :-) I am so sorry that you struggled with finding a physician who understood PID. I admire so much you and the others on this site. What an inspiration and a source of hope you are. Thanks again for all of your suggestions and for your willingness to share your experiences.

Thanks Vortek!! I guess we were posting at the same time. Wow! So analytical. You really put things into perspective. It's kind of funny how it seems you are inside my head. :-) I think I will print all of these responses off and show my husband. In all fairness to him, he has done huge amounts of research on my SID and has looked at treatment from both sides. As stated in a previous post, the immunedeficiency.org says that for my particular variation of this thing, IVIG is not as clear cut.
We have gone completely organic ( we were actually going that way before this happened) and he has been completely proactive in attaining supplements to boost what immune system I have. I think we will make an appointment with my doctor just to go back over the information and options. My husband will probably go this time. I think he needs to hear my doctor first hand.

My anxiety level has decreased immensely since yesterday and that is due to Keili's posts and your post. Words cannot express my gratitude for your willingness to share. I think maybe the last few months I have been in denial a little bit. :-)

So far, my only illnesses have been the sinus infections. I have never had pneumonia...thank goodness. Of course, I realize that could happen at any time. For this past school year, even with the diagnosis and extreme allergies, I missed NO days at school, and let's see, I teach 11th and 12 graders who cough and sneeze and are sick all the time. So Blessed was I to remain well. I do want to keep it that way, though. Regarding coughing, I coughed a great deal last summer but found that it was related to a dust mite allergy. We replaced all of our mattresses, de-mited clothes etc., started allergy shots, and replaced all appliances that could harbor any mold. That's my other allergy. $$$$$ YIKES!!! Anyway, no coughing for months.

I am not as young as most of you. I am in my fifties with no children. I do have nieces and nephews who I am very close to, but they live on the East Coast. I am in Arkansas. I have a great support network here though with a friend of 40+ years and a sister and of course, my husband.

Anyway, thanks again for all of your advice. As I read your comments, I found myself hoping that I would be able to help someone in the same way that you guys are helping me. I am reading a book by the Dalai Lama right now, and according to him, happiness can be found by doing those types of things. I believe he is correct in this assumption. Anyone who doubts the importance of shared experience to help others should not as evinced by our conversations. I always tell my students to be bold, and that mighty forces will then come to their aid. I was bold I guess in asking for help, and you guys were the mighty forces. Thank you again so much.

Correction - The website is http://primaryimmune.org/. Oops. :-)

Hi Lisa, Welcome to the board. I was also overwhelmed and in denial and scared to death and many other things before I found this board. I completely agree with Kelli and Vortec, who helped me a ton:) and even went to my hospital library and asked a librarian for any information she could come up with that had anything to do with cvid and ivig treatments. Once I said yes it was very fast and still scary. But I have been feeling great since and really hidrated2 days before and after and took Tylenol and benadryl. I had more side effects from the benadryl than the ivig! Take your time and gather your information and let us know how it goes.

Amy - Thanks so much for the comraderie!! I am feeling much stronger since connecting with all of you last week. I have not yet re-scheduled a visit with my doctor. I last saw her in May. I go to the clinic every week for allergy shots and seem to be responding as she had hoped with really no sinus infections in months. Of course, that is with the help of a prophylactic antibiotic. I feel great with lots of energy. I did connect with primaryimmune.org and they sent me more information and contacting me by e-mail and will connect me with someone who has my specific antibody deficiency. There will also be an informational meeting here in October. Actually, I hope to keep gathering as much information as possible and compile a list of questions for my doctor before my next scheduled visit.

Positive development - as a result of all of your posts - my husband seems a lot less opposed to IVIG should that development occur. Yet another blessing of connecting with all of you.

Anyway - thanks again for all of your responses. I had no idea how helpful simply reaching out could be. Best to all of you and a Happy Fourth!!!

I'm at this same point now and decided to go forward with ivig when I realized all my immunizations are null and void. The risk of getting tetanus would be high for me and I'd have to give up everything I love to do. There are also quite a few no-vax kids in our small community so I could be exposed to all kinds of things. I think if this happened before my kids I would have tried to tough it out, but it doesn't seem like the right option now. I'm still terrified!