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.
Hopefully soon the increased dosage of Hizentra will kick in and prevent a recurrence. I go back to the doctor tomorrow for a checkup on the current infection.
But being able to go from February to May without antibiotics is an achievement for me. I felt so good then and hope to get back to that level.
Thanks again.
Our stories are a lot a like, as well, as our name. I too, was diagnosed in 12/10 and began Gammagard subq 12/12, the delay was also due to out of pocket expenses from Insurance- 14K+...... When my insurance dropped me, Baxter covered all IgG treatment until I qualified for PCIP.
Due to continued side effects, I switched from Gammagard to Hizentra subq in 01/14 and currently take 10gms. Since I am assuming I weigh quite a bit less than you, my dosage should be less than yours. I weigh between 124-126 lbs.
Aside from very enlarged lymph nodes, enlarged spleen, GI and a couple of Autoimmune issues, I too, have the upper respiratory issues including chronic sinusitis.
As Kelli mentioned, you are doing pretty well. I work from home and in the 1st week of January, I came down with Bronchitis, sinus infection, strep throat and an ear infection. Here we are more than 5 months later, I am still battling the same ear infection along with vertigo that makes me see the porcelain goddess almost daily.
I have been on sudafed daily the entire time with continued antibiotics and Prednisone a couple of times. With the Prednisone, my ears finally drain only for them to fill up again within a day.
Also, as Kelli mentioned, even an increase will take time for your body to adjust. I find that my infections are not as severe now that I am on IgG therapy, but my infections seem to enjoy lingering and it still takes a long time for the infections to go away.
Ear and Sinus Infections are tricky, they can be viral or bacterial or a combination of viral and bacterial. I get all the above.
What is your doctor prescribing for your ear infection? Although, I do not feel relief in my ears from sudafed, it does seem to help my sinuses. Prednisone gives me the worst headaches, but by day 4 my ears drain. By the way, if you suffer from chronic ear infections you may have dysfunctional eustachian tubes, which is one of my issues thus the vertigo I've had since 02/04.
I hope this helps.
Please feel free to ask more questions.
Denise
Currently I'm on a Z-Pak 250mg daily & Cipro 500mg twice a day. I can tell that it's going to take another round of antibiotics to clear this up.
It took about three months before I could really say the Hizentra was making a big difference for me. I'm hoping with the increase in dosage to do even better. In April my family could not believe how different I was compared to last summer when I was sick all year.
I see now that it just takes time for the body to adjust to the dosages. I guess I need to be a little more patient.
Thanks again,
Dennis
I don't do subq, but like alife stated it does take some time to build up and have noticed it is getting better as each month passes. I was still having infections and now I do IVIG every 3 weeks..
I had pneumonia in Jan & Feb then bronchitis but doing well now..Was on several rounds of Levaquin and prednisone before it finally cleared up..
I currently take vancomycin everyday and will be on for life for my c-diff and it is keeping it in check..
Hope you get feeling better and glad you are doing better than last summer. That is super..
Hope things continue to improve for you..
Cheryl
Take care,
Dennis