I found a phone number online and gave it to my doctor to start the process of switching me. She's never heard of Hizentra before (I think I said earlier that I'm her first diagnosed case of CVID), and so I'm also her first patient to switch to it. From everything I've read online in my support groups, it is the drug of choice. It has the reputation of having even fewer side effects than Vivaglobulin, which has fewer than regular IVIG. Before I even left the office my doctor had CSL Behring on the phone (manufacturer of Hizentra), and called me into her personal office to give her information on my insurance and other details that they asked for. She also submitted an order for additional blood work to be done right before my next infusion so that she could submit my "trough IgG levels" to help them determine what dose I will need.
Monday, September 27, 2010
Confusion Over How to Arrange the Switch to SubQ
Sometime in August...
I found a phone number online and gave it to my doctor to start the process of switching me. She's never heard of Hizentra before (I think I said earlier that I'm her first diagnosed case of CVID), and so I'm also her first patient to switch to it. From everything I've read online in my support groups, it is the drug of choice. It has the reputation of having even fewer side effects than Vivaglobulin, which has fewer than regular IVIG. Before I even left the office my doctor had CSL Behring on the phone (manufacturer of Hizentra), and called me into her personal office to give her information on my insurance and other details that they asked for. She also submitted an order for additional blood work to be done right before my next infusion so that she could submit my "trough IgG levels" to help them determine what dose I will need.
I found a phone number online and gave it to my doctor to start the process of switching me. She's never heard of Hizentra before (I think I said earlier that I'm her first diagnosed case of CVID), and so I'm also her first patient to switch to it. From everything I've read online in my support groups, it is the drug of choice. It has the reputation of having even fewer side effects than Vivaglobulin, which has fewer than regular IVIG. Before I even left the office my doctor had CSL Behring on the phone (manufacturer of Hizentra), and called me into her personal office to give her information on my insurance and other details that they asked for. She also submitted an order for additional blood work to be done right before my next infusion so that she could submit my "trough IgG levels" to help them determine what dose I will need.
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My first thought as I read your blog is that you NEED to find a immunologist who is an expert in Primary immune diseases.
ReplyDeleteOurs is a complex illness with many many strange side effects. for example, you say they drew blood to do trough levels to determine what does you needed for sub Q. The AAAAI (American Institute of Allergists and Immunologists) states in their "IViG tool kit" policy statement that trough level should not be a determinant for dosage. The initial formula is by patient weight and then, most importantly by how the patient is doing, infection, GI issues etc. The FDA package insert for Hisentra states that the starting dose should be the monthly IViG dose (in Grams) divided by 4 (makes it a weekly dose) time 1.37 (you need more SubQ than IViG).
Many patients see an expert immunologist once or twice a year and have the majority of their medical care close to home. In may cases a patient will have to travel several hundred miles to see an expert.
I equate this to if you had a broken leg, would you want a physician treating it who had never seen a broken leg before or would you find the most experienced physician you could to set it. Personally I'd choose the latter. This is not about hurting you physician's feeling or a lack of loyalty; it is about a possible life changing illness that is very complex. If you contact the Immune deficiency foundation, primaryimmune.org they can help you locate an expert.
Last advice, make sure you are enrolled in CSL's emergency insurance interruption program. It is a free program that will supply your meds in case you every lose insurance coverage. No one ever plans to lose coverage, but sometime patients do.
Good luck, I've been in IVig for over 28 years.