For the sake of clarity, IVIG is the form of Immunoglobulin treatment that requires an IV and nurses to administer each time. Sub-Q is a different form of the same treatment, but is administered into the fat layer under the skin (as opposed to a vein), and after instruction from a nurse, a patient gives themselves the treatment in the comfort of their own home. I already stated that I see only pros to Sub-Q now (originally I couldn't understand why anyone would want to do it), but I will try to list the features of both treatments for a more direct comparison.
IVIG | Sub-Q |
---|---|
Administered every 3-4 weeks | Administered every week (or more) |
Treatment can take anywhere from 2 - 12 hours or longer | Treatment generally takes an hour or 2 -- longer if desired |
"Many" different brands to choose from | Currently 2 brands to choose from (both made by CSL Behring) |
A clinic or home nurse needed for every treatment | Patient administers to themselves after training |
One IV needle per treatment | Two to eight tiny needles per treatment |
Treatment administered directly into vein | Treatment administered into fat under skin |
Side effects are very common | Side effects are reduced |
Premedications generally required | Premedications often required |
Bruising or other irritation at injection site | Itching, swelling or other irritation at injection site |
Patient has to arrange infusion schedule with nurse or clinic | Patient administers treatment at home on their own schedule and terms |
Energy drain tends to happen the week before an infusion | Patient is able to maintain levels in a more steady state, resulting in higher energy |
Medical insurance generally covers treatment as a Dr. Visit | Covered by Pharmaceutical insurance as a specialty drug |
Everything is set-up for the patient by nurses each time | Patient does all set-up and prep work |
Diluted solution--high volume = more time | Concentrated solution--low volume = less time |
When my doctor first told me about Sub-Q I was repulsed by the idea. I couldn't imagine sticking myself with multiple needles every week, or even sitting through the treatment that frequently. I think that I've had a change of heart for a number of reasons though. First of all, I've gotten really sick from side-effects of IVIG. I think the first time I read in my support group that other people who had switched were no longer having rashes or breathing problems or exhaustion, was the first time I gave Sub-Q some serious consideration. Then, I met someone who had actually switched, and he was so thrilled with the results that by the time I finished talking to him I'd gone from hesitantly accepting that I might try it one day to thinking it might be a great idea for me. Then add in the hassles I've had with the nurses at the infusion center, the fact that my treatments take an entire day and often make me so sick that I miss work, the lack of energy and frequent illnesses and infections, and I'm ready to make the switch!
I like the idea of being able to do my treatment when it works for me rather than being held to the Infusion Center's schedule, I spoke to some home health nursing facilities when I was weighing other options for sticking with IVIG, and they sounded like they would be trying to rush me through my treatments too, so that didn't sound like a viable option either. The thought of having more energy, being sick less frequently (with time), and no one rushing me or hassling me sounds heavenly!
Hizentra supplies a home health nurse to train you so your doctor would not have to.
ReplyDeleteStudy up though. The nurse that was sent to me when I startwd with Subq didn't know even how to do it.
ReplyDeleteIf you have Medicare or an Advantage Plan, whatever brand you use for IV or subQ, it is billed through Part B not your drug plan. Everyone is different and Hyzentra for me did not work out. Being a 20% solution makes it a thicker viscosity. I can't absorb it. It should be absorbed in a matter of a couple days. For me, 2-3 weeks later the pocket is still there. When I do my next infusion it is very painful because it infuses around the old sites. From my investigating I found out this is know as "Tunneling". It tunnels around all the old sites. I was running out of places to infuse. We tried different length needles, slower rate tubing and nothing worked. So I'm going back to GammaGard. I was on it IV for 10 years so hoping for better results with it SubQ. You just have to find what works best for you and your body.
ReplyDeleteI started on IVIG 16 years ago - lasted 2 years when I had trouble with my veins. Started Hizentra subq in 2005 - initially only had 2 needle sites - now with increase in medicine I have 6 sites - I want to go back to IVIG.
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