Transitioning to Sub-Q

As I mentioned in a previous post, I'm in the process of switching over to Hizentra subcutaneous IgG (Sub-Q). Switching from IVIG to Sub-Q is a matter of personal choice and has advantages and disadvantages--although for me, I only see advantages in making the switch.

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!

Immunologist Appointment 

Thursday, July 1, 2010 

I saw my immunologist yesterday, and we agreed that when I see her in September she'll set me up to start on Hizentra SubQ. I'm excited, and would like to start sooner, but she's kind of swamped and will be the first doctor in her department to start a patient on SubQ. Her nurse is on vacation for the next 5 weeks, so she wants to wait until her nurse is back to help her with the forms. I gave her a copy of my insurance card just in case it turns out to be easy enough for her to set it up without her nurse, but I'm not holding my breath over it. She said she has an even more complicated patient right now who's needing a lot of her help and she's having to do a lot of research to help this person. I don't begrudge that since she helped me the same way, and it's awesome to know that your doctor cares enough to spend that kind of time to investigate and try to find the best answers. 

She'd never heard of Hizentra before, she'd only heard of Vivaglobulin, but when I told her that they're made by the same company, she was less worried about doing the Hizentra than she was when I first mentioned the name. I'd considered printing off a copy of Hizentra info from their website, but didn't. I wish I had as it might have made things a little easier for her, nevertheless, she's willing to put me on it. From the time she left the office until the nurse came back in to give me back my disability form, my doctor had phoned the drug manufacturer and found out what pump to prescribe for me and was already trying to get the ball rolling. I really appreciate her attitude!

She authorized my return to work at 20 hours per week, and didn't give an end date for now, although I just realized that will be necessary for my insurance to cover my disability payments while I'm part time. Oh well, hopefully they'll be in the office tomorrow. ;)