I haven't added anything here for a long time, and for that I apologize. I guess I've been kind of scared about my treatments and got down in the dumps over it. Things have improved tremendously though, so I think it's about time I posted an update.
I kept having a lot of bad reactions to my treatments and my doctors kept telling me that if I didn't improve, they would have to take me off of all IgG therapy and put me on prophylactic antibiotics. What scared me about that is that I already have significant lung damage from all the infections I've had over the years and prophylactic antibiotics are less effective at treating CVID than IgG therapy. In addition, I tend to develop allergies to antibiotics quickly, and there are already many that I can't take either because they quit working for me, or I suddenly developed an allergy to them. I think we've finally come up with a solution that is working though, and my infusions have been going much better with fewer side effects.
I now take 20 mg of Prednisone the day of my treatment (an hour or so before I start it), and then another 20 mg of Prednisone the day after my treatment. If I take that and make sure to hydrate well, I tend to not have many reactions, and those that I do have are minor. The only exception to that seems to be if I forget to take my second Prednisone, then about 24 hours after the treatment I will start having trouble breathing.
The good news though is that I'm recovering more quickly from my infusions too. It used to be that I would feel exhausted and sick for the whole week between infusions, but now I feel weak the day after my treatment, but by the second day after, I feel pretty good! I've actually started looking forward to my infusions because I know they will help me feel better!
Today I forgot to take my second Prednisone, and so I'm having breathing trouble now. I was trying to figure out what was causing the chest tightness, then suddenly realized I hadn't taken the other pill. I need to make sure I put it in my pill container for the next day.
Hi. Thanks for your site and updates. I have CVID, resulting in Juvenile Rheumatoid Arthritis, removal of a thyroid lump, chronic hives, multiple sinus infections, pneumonias & pleurisys and partial lung collapse which took over 6 weeks to normalize. My damaged lungs are always congested due to Bronchiectasis. My Immunologist, Respirologist and Infectious Disease Specialist recommended immunoglobulin infusions and antibiotics for the whole cold/flu season. Knowing the effect these can have on the body, I opted for another approach and haven't had an infection of any sort for over a year (a record!), not to mention got through the winter without incident. Dr. Zoltan Rona in Toronto is a medical doctor who treats with natural products like Colostrum (the best immune balancer known to man), Aloe Immune, Probiotics, Vitamin D immulsion, N-Acetyl Cysteine (detaches phlegm from the lungs), as well as other beneficial products. I also received a Vitamin C intravenous treatment. I have seen a dramatic difference in my health over this year of treatment. I'm working out again and rarely use my inhalers. I also have my sense of smell back! My immune globulin count is still low, but I'm stronger than ever, hive-free and prescription-free. Oh ya, juicing veggies like beets, carrots, green beans, etc. is a huge boost too. My friends and family are amazed to see me like this. I know every case is different, but thought I would share because there are beneficial options out there that have zero down-side. All the best! A.D.
ReplyDeleteIronically, when I first ready this comment back in May I wasn't completely on-board with it, as I was still of the mindset that the best way to treat CVID was with infusions. However; I did find the information kind of exciting as I'm usually very pro-natural medicine, and the very next day I found an article linking my seizure drug to CVID (see next post). The next month my doctor stopped my infusions and put me on prophylactic antibiotics due to my intolerance of infusions. I've changed my diet also and am now vegetarian and considering juicing too. Thank you so much for providing this information! :)
ReplyDeleteI discovered I had CVID in my late 40's. After reading this blog, I realize I have not had it as bad as others. I had constant upper respiratory tract infections, sinus infections and ear infections. My daughter has juvenile rheumatoid arthritis. I think there is a connection there. But as her doctor said, "What good does knowing that help now?"
ReplyDeleteIn any case, I am in my third year of taking Hizentra. It is IgG. I give it to myself once a week. It is not given intravenously, but rather through the skin (subcutaneously). I have never had intravenous IgG, just the Hizentra. It is easy enough to do and I cannot say I have had any major problems, knock on wood. I cannot tell from this blog if anyone has tried it or not. It takes me about an hour for the entire infusion. It probably takes another 20 to 30 minutes total to prepare it and then dispose of everything when I am done.
Since, I take it once a week, my IgG levels remain at a more constant level than compared to an IV dose. It is fairly easy to travel with. And so far each year, I have taken an extra dose when I have gotten really sick. But, since I started the treatment, I do not catch every single bug going around. When I do get a sinus infection, I can usually knock it out with one or two rounds of Omnicef. I too, have become allergic to so many antibiotics. I do feel better. It is not a 100% cure, but it has improved my quality of life dramatically!
My insurance covers it once I hit my deductible. Overall, it is less expensive than going to an infusion center. I admit it gets old very fast..once a week. But, it sure beats being sick all of the time.
I hope this information helps someone!
Thank you for sharing your experiences, I am sure that your information will be helpful to many people.:)
DeleteI started with IV infusions every three weeks for about 8 months, then I tried Hizentra for about 3 weeks but my body really did not like it, so my Dr switched me to Gammagard S/D via SubQ. I was on that for about a year and half and my Dr pointed out that the infusions were having a negative impact on the quality of my life, so we stopped my infusions. I now take prophylactic antibiotics every day instead of infusions.
There may be a factor in your daughter's arthritis, and that is that many CVID patients also have arthritis. Has she been tested for CVID?
I get the impression you have been somewhat lacking in contact with other CVID patients, and thought I'd list a few resources where you can connect with other patients:
1) Daily Strength CVID group: http://www.dailystrength.org/c/Common-Variable-Immunodeficiency/support-group
2) The Immune Deficiency Foundation has many patient resources and education meetings: http://primaryimmune.org
3) There are also some support groups on Facebook: https://www.facebook.com/groups/127399757357272/
https://www.facebook.com/groups/CommonVariableImmunodeficiency/
To HealthPlease
DeleteHow are the prophylactic antibiotics working out for you? My daughter gets sick from infusions and we were looking for an alternative treatment.
Hi Beth,
DeleteI'm sorry it's taken so long to respond. I took the prophylactic antibiotics for a few years (~4). It seemed fine except I had to stay on alert for yeast infections. I mean, I still got sick so I had to be very cautious. I then started focusing on my gut health since they now know that 80% of our immune system is in our gut. With that in mind, I transitioned from daily antibiotics (which destroy gut health) to high dose of daily probiotics, which improve gut health. I also try to make sure that I have a balanced diet and eat bone broth pretty often (the bone broth helps restore gut lining). If you are on Facebook, I have a group called CVID Focus on Wellness that is geared to alternative treatments for CVID and positive mindset. Because I can't do infusions my Dr pretty much goes along with whatever I want to do, even though I didn't stop the antibiotics with his permission. I would recommend discussing things like that with a health professional though, and do some research to make an informed decision. Please message a group admin within Facebook to be admitted to the group. Here's a link to the group https://www.facebook.com/groups/715444995234428/