Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hello everyone. I just joined the discussion group - thank you for being here in a world where there seems to be so little information available on this topic. I'm looking forward to learning more about each of you and reading your posts.
I live in a small town. I think I must be very fortunate to have a pulmonary doctor who thought to run blood tests to check my Ig levels. We found that my IgG is 412 and my IgA is also low. He got me an appointment with a very reputable immunologist. I go in two weeks - again I am very fortunate because there is usually a six month waiting list.
I've been reading a lot about hizentra. Just based on what I've read about sub-q vs IV it just seems more convenient. I'm interested in what you guys have to say about that - I know I've got a lot to learn. Getting insurance approval has seemed a lot like fighting hoards of alligators with a baseball bat but everything seems to be on track with the approval process now. (She says, hopefully). We were planning to initiate treatment right away but since I was able to get in with the immunologist - we are waiting since this treatment would skew tests they are planning to run (such as response to the pneumonia vaccine, etc). I guess I'm still in a bit of denial too. I keep hoping that when I see the immunologist he will tell me I don't have to have this type of treatment. Based on what I'm reading though...that isn't very likely. I think I've got about two weeks to hang on to that delusion.
What else do you guys do to stay healthy? Are there alternative treatments, supplements, magic rituals (*grin*) that help?
Thank you so much for being there. Hugs to all of you.
I live in a small town. I think I must be very fortunate to have a pulmonary doctor who thought to run blood tests to check my Ig levels. We found that my IgG is 412 and my IgA is also low. He got me an appointment with a very reputable immunologist. I go in two weeks - again I am very fortunate because there is usually a six month waiting list.
I've been reading a lot about hizentra. Just based on what I've read about sub-q vs IV it just seems more convenient. I'm interested in what you guys have to say about that - I know I've got a lot to learn. Getting insurance approval has seemed a lot like fighting hoards of alligators with a baseball bat but everything seems to be on track with the approval process now. (She says, hopefully). We were planning to initiate treatment right away but since I was able to get in with the immunologist - we are waiting since this treatment would skew tests they are planning to run (such as response to the pneumonia vaccine, etc). I guess I'm still in a bit of denial too. I keep hoping that when I see the immunologist he will tell me I don't have to have this type of treatment. Based on what I'm reading though...that isn't very likely. I think I've got about two weeks to hang on to that delusion.
What else do you guys do to stay healthy? Are there alternative treatments, supplements, magic rituals (*grin*) that help?
Thank you so much for being there. Hugs to all of you.
First, I would highly recommend the Immune Deficiency Foundation - www.primaryimmune.org. They are a WEALTH of information!
Next, infusion type is very individual :) I've done both and they both have their pro's and con's. Frankly after a year on subq its kind of a pain in the butt. Like I'm 2 days late doing it now. I work full time so on the weekends I hate spending hours doing this. BUT my levels are at an all time high and most importantly I RARELY get sick! The recommendations are typically to start with IVIG for 3 months then transition to subq.
My best advice is to do your research and become your own best advocate! See a doc experienced in PIDD and who treats others like you.
I do not live in a bubble even though I have developed a serious lung disease. I work full time, am a single parent to an 8 year old, and piddle around my house baking, gardening, etc. I try to "run sprints and not marathons", listen to your body, take care of yourself and lots of sanitizer lol
I also work full time at a demanding job. It is encouraging to hear the treatments have made such a difference for you. My kids are 'fur people' - I am the resident crazy cat lady :-D I appreciate your spirit.
I am very sorry to hear of your lung disease. I've been losing lung function at a scary rate - which is what, I think, prompted my doctor to test for this... but I am currently growing a lot of heirloom vegetables, flowers, and herbs. I go to Tai Chi when I can.
I get what you are saying about sprints. It is so easy to become discouraged when I am not able to accomplish everything I need/want to do and if I don't keep myself in check - it can turn into depression. I guess it's best to focus on what you ARE able to do and, as you say - pace yourself.
So - IVIG is preferred initially. That's good info. My concern with it is that I would have to wear a 'port' for the IV. I told my doctor that was so 'not sexy' (hahaha). Seriously though - it was disturbing to me and probably one of the main factors causing me to lean toward sub-q. Hearing your 'real world' experience is especially helpful. It's one thing to read an article - it's something else entirely to hear from someone who has lived it.
I have a lot of confidence in the immunologist I will be seeing. He has a high powered resume and a good bit of experience with this condition and others like it. I'm looking forward to finding out exactly what is going on with me. In some odd way - it's a bit of a relief to find out that there is a real reason why I have been so prone to illness and why it is a lot more difficult for me to rebound from things that others seem to shrug off easily.
My job is about to put me into a big cubical environment. I think I'll order a couple of gallons of sanitizer ;-)
It sounds like you are doing great. Keep up the good attitude, it helps :) Keep up your gardening and thai chi too. I USED to carry wipes and wipe down my shopping carts before grocery shopping, I wipe down motels if I am required to stay in them, publicly used phones, etc. I did not do this with JUST CVID though (I would like to point out again I just lived with my head in the sand and acted like a "normal" - but I rarely get sick). Now with the lung disease I have to be very careful. You will figure out what works for you :)
Thank you for the insight, Kelli1b. That makes perfect sense to me.
You two have taken away some of the dread.
Any tips on questions to ask when I see the immunologist for the first time next week (the 24th)? I see my pulmo doctor on Tuesday - mainly for a check up and I'm guessing I might pick up records to take with me next week. The immunologist's office has already sent two packets in the mail - forms to complete. It's worse than doing my income taxes!
My doc started me out on Hizentra. I just did my 26th treatment last Tuesday evening, and it's going well. I'm nearing my 6th month mark and my energy levels are improving and I actually fought off a cold last month (unheard of!) with no antibiotics. It takes a while for your levels to go up (which might be why they do IVIG out the gate normally. I don't know why my doc didn't do that, but I'm fine). And even after they are up, it takes a few months to feel the goodness of that effect. Just be patient with the results.
With both treatments, hydrate well--that is KEY to staving of many adverse reactions. And I mean often...like, the day before, the day of and the day after...and well, just keep up on hydration. It's good advice for life and excellent advice for those of us infusing IgG.
Blessings!
http://www.dailystrength.org/c/Common_Variable_Immunodeficiency/forum/10654764-going-any-questions
http://www.dailystrength.org/c/Common_Variable_Immunodeficiency/forum/10717161-seeing-pid-specialist-tomorrow
And notes from a conference :)
http://www.dailystrength.org/c/Common_Variable_Immunodeficiency/forum/12347149-conference-notes
I really appreciate your advice on the hydration. I will take that to heart. It's good to know what to expect. I will keep in mind that these things take time so I won't get discouraged.
Blessings right back!
Yikes - 150 is pretty scary. So glad you are doing better! Reminds me of the time I got the flu a few years ago. Within hours of first showing symptoms...I was checking into the hospital (around 125). I missed a month of work - a month I couldn't afford. I was SO sick - I really think it must have been pneumonia. That's rough when you live by yourself. (And to add insult to injury - my hot water heater decided to break down LOL) I guess that is what has me so concerned about going into a cube environment at work (I'll be the one spraying everybody with lysol LOL) Lucky for me though - I'll be seeing the immunologist about a week before that happens and it will be a while before flu season gets underway.
I completely get what you are saying about the denial. I've been that way for a while.
It is really great to hear you didn't have bad side effects. If I hadn't come here - I would never have known about the hydration!
400 is fantastic!
> I told my doctor that was so 'not sexy' (hahaha). Seriously though - it
> was disturbing to me and probably one of the main factors causing
> me to lean toward sub-q. Hearing your 'real world' experience is
> especially helpful.
Allow me to share my (brief) experience thus far with IVIG. (I'm going in for my 3rd treatment tomorrow, yay.)
(1) I'm feeling great. Fantastic, actually. Have not felt this great in a long time.
(2) I go to the hospital, sit in a recliner, and get a small needle poked in my arm. They draw some blood (to measure trough levels), then they insert the IV. It pinches a bit at first, but the pain doesn't last more than a few minutes. The IV is hooked up to an injector device. (Amusingly, the injector device runs off the chips that the company I work for makes.)
(3) While I'm there, I surf the web on my iPad, sitting in a comfy recliner chair. (Occasionally, I chat with the crazy people sitting beside me, though they usually try to change the TV channel on me and put on Wheel of Fortune ... lol.)
(4) I'm in and out in about 3 hours. And that's pretty much it. It's a fairly quick, once-a-month "tune-up", with no bruises, no pain, and I'm good to go.