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.
I talked the doctor into infusing me after the 3rd week, and OH MY GOD I feel AMAZING!!!! I feel so good, lots of energy, have been riding horses, doing alot of walking, and running here and throe. I don't believe it, I AM SO SCARED this is all going to end if I cant convince him to continue infusing me at every 3 weeks. I am leaving on vacation in a couple of days, to camp in Colorado, Estes Park, (yeah I know, it FIGURES the whole place is up in a blaze) and we were planning on going for a month, so I am scared that me not getting my infusion is going to hit me like a ton of bricks, major fatigue. The one and only chance I have to go camping like this and this frickin monkey on my back has the potential to ruin everything. Anyways, going to see Dr. Church at Childrens on Thursday, gonna ask a ton of questions, will let know. Here's to hoping everybody is coping, and to let them know, that I have been so far down in the dumps with fatigue and now I am feeling great, so who knows, high levels, or just coincidence?
I do have to admit that I've been feeling a bit worse for the past 1-3 days. Because of timing with the hospital, I'm technically around ~30 days since my last injection, and I suspect that my trough levels haven't really stabilized yet anyway. That said, I'm still okay, just that my cough is coming back.
All of that said, I'm sure that, once your troughs stabilize (in particular, if Dr. Church adjusts your dosage to deal with this), you'll be fine. Even if that doesn't happen, you'll probably get through it with only minor bumps in the road. From everything that I've read, the trend among medical professionals is to move toward 4 weeks between infusions, while adjusting dosages to get trough levels in the proper range.
The more I learn about our condition the more I come to understand there is WAY TOO MUCH emphasis put on trough levels by our Physicians and Insurance Companies. Im truly starting to believe many of us are being seriously under treated and that this is the cause of many of our ongoing symptoms including fatigue, low grade infections, gastrointestinal issues and the cancers we seem to be more susceptible to.
An IgG level of say 1200 for a person with a normal immune system isn't the same as a CVID patient with a supplemented trough of 1200. Our adaptive immune system does not increase specific IgG levels as we are exposed to specific bacteria as would a properly functioning immune system. Just having a bunch of different antibodies totaling a certain number doesnt mean we have enough of a specific antibody we may need to fight off a bacterial infection we have become exposed to.
Here's a quote right from Gamaguard that pretty much sums it up.
GammaGard
Primary Immunodeficiency Diseases
For patients with primary immunodeficiencies, monthly doses of approximately 300-600 mg/kg infused at 3 to 4 week intervals are commonly used.42,43 As there are significant differences in the half-life of IgG among patients with primary immunodeficiency, the frequency and amount of immunoglobulin therapy may vary from patient to patient. The proper amount can be determined by monitoring clinical response. The minimum serum concentration of IgG necessary for protection varies among patients and has not been established by controlled clinical trials
Stimpy there is NO reason you shouldn't get your infusions on a 3 week schedule it is VERY common. Typically people get blood draws before their infusions...it really serves no purpose to draw after the infusion as you are at PEAK level..then your body starts eating up that infusion. I am hoping they keep you on the schedule that works for you and makes you feel your best. Good luck (Dr. Church is great, hopefully he'll help with this!)
> by our Physicians and Insurance Companies.
What do you mean "too much emphasis"?
Trough levels are important because they generally dictate "how much protection" you have. This is kind of fundamental to treating the disease, so of course it gets a lot of emphasis. (This is like saying that physicians are putting "too much emphasis" on glucose levels for diabetics -- well, of course!)
That said, different physicians have different views on trough levels. By and large, most seem to agree that trough levels around 7mg/mL to 9mg/mL confers good protection.
> Im truly starting to believe many of us are being seriously
> under treated
I think that I see what you're saying, but want to confirm. Are you suggesting that there are too many physicians or insurance companies that are trying to "cheap out" on patients (in the US), and so they're more relaxed about minimum trough levels?
From my own experience, cost has never been a factor in the determination of how much IVIG I get. My specialists set the rates for my treatment in an effort to get my trough levels to around 8mg/mL at the end of the 28 day half-life.
> gastrointestinal issues and the cancers we seem to be
> more susceptible to.
There is no understanding, right now, of why CVID patients have an increased risk. It's interesting to speculate, as you have, that there is a link between an increased risk of cancer and poor trough levels.
> Here's a quote right from Gamaguard that pretty much sums
> it up.
I'm not sure which part of the quote you had intended to "sum things up". I suspect you mean the part that says: "The minimum serum concentration of IgG necessary for protection varies among patients and has not been established by controlled clinical trials "
This is a fair statement to make. It's just saying that, because everyone is different, they can't conclusively confirm how much IgG any random individual would require to be "safe". This does not contradict with earlier statements that most physicians aim for between 7mg/mL and 9mg/mL.
Once again I am no expert, but through personal experience and the experiences of many other CVID patients, a lot of us have not been so lucky. Many CVID patients actually keep a kit of antibiotics, steroids, cough suppressants, inhalers, etc just because we know the symptoms, infections and complications still come and go even while receiving IgG replacement therapy.
My normal IgG levels are between 800 and 1000. Needless to say many uninformed doctors and insurance companies would, and have, considered this normal and attempted to deny treatment.
Even though over the past 3 years I have:
1) Suffered with severe sinus infections for almost two years straight, while being prescribed numerous and very high doses of antibiotics and steroids.
2) Been subjected to two unnecessary sinus surgeries and a third to correct issues created by the first two, due to ongoing infections. The ENT that performed the first two surgeries said that I was the record holder. He said he has never encountered anywhere near the volume of infected mucus he encountered while performing my surgeries. Once again, I was on steroids and high doses of antibiotics before and after both surgeries.
3) Been scheduled for a prostate ultrasound and biopsy, due to an undiagnosed prostate infection causing elevated PSA levels. Luckily the Urologist decided to cancel the biopsy two days before the scheduled event because he felt something wasnt right and that maybe it was an infection causing the elevated PSA levels.
4) Been injected with numerous vaccinations only to show no increase or a minimal increase in my IgG levels for those specific pathogens.
5) Suffered severe fatigue and gastrointestinal issues.
6) Developed high blood pressure due to inactivity and weight gain caused by the fatigue, ongoing infections and side effects of the medications. Just 5 years ago I was able to complete a 100 mile MS bicycle ride.
7) Taken more antibiotics(prophylactic as well) and steroids than a normal person will in 4 or 5 life times. I believe it was 6 or 7 pages of small print when my local CVS provided a printout for my Immunologist to help make the case with my insurance company.
8) Consumed more yogurt and probiotics to combat the side effects of repeated high dose antibiotics than anyone should ever have to. I used to love yogurt.
I could go on and on, but I wont. Yes, even after all of this IgG replacement therapy was initially denied and my insurance company has attempted to deny continued treatment several times. Luckily I am a serious scrapper and have a background in the insurance industry. Ive had to threaten numerous times to go to the State Insurance Commissioner and had to actually contact on that office two occasions to continue my treatments. I take my hat off to the CT Insurance Commissioners Office!
My Immunologist has arbitrarily, and admittedly so, set a trough goal of 1400-1500 for me. This goal was achieved using SubQ Hizentra, yet I still experienced several serious bacterial infections and a few ongoing low grade infections over the past year. I guess this is why I am so adverse to the suggestion of a normal or recommended trough level. I believe I have more of a Selective Immune Deficiency and I feel my test results confirm this. Unfortunately, specific antibodies are not available individually at this time, so we all get pretty much the same pool or mix of antibodies. I know I am receiving many antibodies that I probably dont need while at the same time not always receiving enough of a specific antibody that I do need.
I think there absolutely needs to be several large and long term studies performed around the treatment, side effects and mortality of PIDD/CVID patients. I would like to see the results of a study comparing a wide range of trough levels, frequency of dosing, specific IgG products and SubQ verses IV. These studies should include lower trough levels combined with a prophylactic antibiotic(higher doses as needed) as well as much higher trough levels than are currently achieved.
I truly wish you wish you the best, but well probably have to agree to disagree on some of these issues surrounding CVID patients and their treatment. Be well!
> your treatments are working well for you. I am happy for you
> and honestly a little jealous.
Thank you for your kind words. Sorry for making you jealous ... I hope that I don't sound like some kind of "socialized medicine evangelist".
Most Canadians watch US politics pretty carefully, and I've seen the debate over socialized healthcare in the States. Personally, I think that it was "demonized" by anti-healthcare Republican/Tea Party players. While there is some truth to *some* stories -- namely, if you break your arm, it could take you a while to get treatment -- in the vast majority of cases, particularly critical care situations, it works fabulously well.
In particular, people who suffer from expensive or hard-to-treat problems (cancer, CVID, whatever!), or who need immediate attention (e.g., heart attack) benefit greatly from a socialized system. And that's really how the triage system works.
All of that aside, I am constantly amazed by the kindness of strangeness -- those who donate blood of their own free time and will, and those who pay their taxes -- so that I can live a healthy, mostly normal life, while paying nothing for my treatment.
> My normal IgG levels are between 800 and 1000. Needless
> to say many uninformed doctors and insurance companies
> would, and have, considered this normal and attempted to
> deny treatment.
... wow. Sorry to hear that. I don't (morally) understand how insurance companies can make this kind of decision for you.
Alas, with the state of US politics, it doesn't look like this will change (much). It's such a great country for independently wealthy individuals (think: the 1%), and chronic health problems can become really big issues for everyone else.
> My Immunologist has arbitrarily, and admittedly so, set a
> trough goal of 1400-1500 for me.
From my understanding and discussions with my immunologist, your numbers sound like they're in the right ballpark for SubQ, based on currently-accepted values. I agree with you -- who's to say that this is "right" for everyone? No idea.
We do know that SubQ trough levels need to be higher than IVIG, because the IgG doesn't decay as much with SubQ treatment, due to the weekly infusions. IVIG trough levels are lower, because the injection starts off much higher (probably above 2000+ -- as my immunologist says, "off the charts"), and then decays over 4 weeks.
> I think there absolutely needs to be several large and long
> term studies performed around the treatment, side effects and
> mortality of PIDD/CVID patients.
There are a few older ones; generally, one or two conducted throughout the 80s, 90s, and mid-2000s. If I come across any new studies in my readings, I'll be sure to post it here.
> Be well!
And the same to you :)