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 have my second IVIG scheduled for Friday, 1 week late. I got a call from my specialty pharmacy, Medco Accredo,on Monday telling me the infusion center, Corum, has their own pharmacy and my prescription insurance will not pay for the Previgin at the infusion centers pharmacy. They claimed I must change where I am getting my infusion or risk being charged out of pocket. I panicked and starting calling centers in my area and could not find one that did not have an in house pharmacy. Medco called a center that is in a different part of town and told me I needed to go there.
Then I remembered I had received a call a few days earlier from someone in the IBM Aetna department that informed me she was my case manager and would be checking in with me periodically to make sure everything is going well. She use to be an infusion nurse and actually understood my disease. She left me her number so I contacted her. She verified that Aetna had approved Corum and would be covering the medicine as part of the Medical insurance and not the pharmacy coverage because this can be a problem for patients so they make exceptions for these cases. She was also very concerned when I told her the rate of my first infusion, (the last 2 200ml bottles in just under an hour) and strongly encouraged me to bring this up as a problem to my physician.
This whole thing only took 24 hours but my stress level was out the roof. I feel so lucky to have such good insurance and my heart goes out to those who don't.
I am also starting to realize how much my first infusion helped despite the problems of the first 3 days. Two days after my infusion should have been scheduled, I got a cold and today my joints started hurting again. I use to always have "allergies" but now I am starting to think that I had a constant minor virus that kept me coughing. The past few weeks are the first time in a long time I remember going 3 weeks without a cough. Friday is my next infusion and we will see how it goes from there.
Marilyn
Then I remembered I had received a call a few days earlier from someone in the IBM Aetna department that informed me she was my case manager and would be checking in with me periodically to make sure everything is going well. She use to be an infusion nurse and actually understood my disease. She left me her number so I contacted her. She verified that Aetna had approved Corum and would be covering the medicine as part of the Medical insurance and not the pharmacy coverage because this can be a problem for patients so they make exceptions for these cases. She was also very concerned when I told her the rate of my first infusion, (the last 2 200ml bottles in just under an hour) and strongly encouraged me to bring this up as a problem to my physician.
This whole thing only took 24 hours but my stress level was out the roof. I feel so lucky to have such good insurance and my heart goes out to those who don't.
I am also starting to realize how much my first infusion helped despite the problems of the first 3 days. Two days after my infusion should have been scheduled, I got a cold and today my joints started hurting again. I use to always have "allergies" but now I am starting to think that I had a constant minor virus that kept me coughing. The past few weeks are the first time in a long time I remember going 3 weeks without a cough. Friday is my next infusion and we will see how it goes from there.
Marilyn
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I have my second infusion at an infusion center tomorrow..
Marilyn
Not everyone notices changes quite that fast. My experience was the first few months didn't seem all that great. I was still getting sick and often suffered from the side effects of the IVIG. After going through one terrible infusion I ended up in the hospital and about 48 hours from dying. It turned out to be a problem with the product on top of a recent infection. It turned out to be good in the end though. DR changed to another brand and slowed the infusions down and within a couple of months I started to notice how different my life was becoming. I was able to work again, close to a full schedule, I was able to participate in small gatherings and family events. I was slowly getting my life back. This was my miracle. A couple of years ago I would have never thought it was possible.
There was still another lesson I had to learn however. I found that you must still respect your disease and maintain a certain amount of caution in your life. You can still get kicked in the ass at anytime, don't forget that. IVIG is there to help us, not cure us unfortunately. Still, it is life changing when it's working. Just remember that it doesn not always work 100 percent.
Enjoy your new empowerment and keep us posted on how you do. Best wishes to you on your recovery.
However, just a week or so ago I received a letter from Blue Cross informing me that there was this great new place to get IVIG, CORAM. I still don't understand what I am expected to do with that... I'm worried that they will cut me off unless I use one of their infusion centers. I looked them up and read about them and wasn't too impressed. It reminded me of an assembly line or something. Regardless, now I am nervous that they are going to pull the plug on me. I totally love my immunologist and his infusion center. He is the founder of the center here in Austin. He came here after setting up clinics in Houston and Denver. I get my infusions at the Dell Center where he is the head of Immunology. Why would I ever want to leave there?? I love my nurse. 2 years is a lifetime to spend with someone so intimate as your doctor and nurse.
Please tell me everything you might know about Coram (byw, I'm not sure if it is Coram or Corum).