I'm a lousy blogger

I've never intended to post with high frequency on this blog, but still, I should post more often.  I had a draw done for my IgG level on 11/1, the day I drove to El Paso for my first Hizentra infusion.  That result was a 1066 on a 700-1600 scale, a new high!  Much happiness ensued!  That infusion went well, and life went on.

In December, I was feeling a little off.  Not sick, just not quite well.  I had a bit of a cough, and finally in January, while school was still out and my cough was not improving, I decided to see my doctors.  Since I needed to establish a new primary care physician locally, I went to a new doctor and had her order a new IgG test.  Since I described a slight tightness in my chest, she got paranoid and wanted to rule out congestive heart failure.  An EKG and an echocardiogram were both fine as I was fairly confident they would be.

The IgG test was kind of disappointing, though: I dropped from 1066 down to 904!  Still in the theraputic range, but a bit of a shock.  I didn't know whether to suspect the illness driving it down or perhaps Hizentra wasn't working too well for me.  After discussing this on the IDF message boards and talking to my immunologist, I learned that your level can drop due to a persistent illness.  The new doctor suspected mono as a possibility, the problem is that an Epstein-Barr test isn't a really solid indicator when you're receiving blood products for a condition -- the blood products will contain antibodies that can throw such tests off.

So the test was kind of inconclusive.  I'm feeling better now, the nagging mild cough is gone, and a blood test earlier this month showed that my IgG count had recovered and shot up to 1080!  So yet another new high!

I'm hopeful that this will continue and that the January level was a momentary setback, so to speak.  Another reason for optimism is that apparently my Hizentra dose is actually a little low.  A recent issue of the IG Living magazine had a dosage chart for medication conversions using a baseline from IV dosing.  According to this chart, my Hizentra dose should maybe have been a bit higher.  I contacted my immunologist, and he said he just went along with what the pharmacist said.  I called my specialty pharmacy and never got to speak directly with the pharmacist.  I then got a message from them saying that my dose was going to be increased from 55 ml (11 grams) to 60 ml (12 grams), so theoretically my IgG level should go up again, we'll retest in another 2 or 3 months.  Apparently it was a rounding error: they went from 11.5 grams to 11 instead of up to 12.

But things are never easy.  My pharmacy knows that I infuse twice a week and have done so for over a year.  When I was doing 55 ml, they'd send me the following bottle distribution: 2x20 ml, 1x10 ml, and 1x5 ml.  I'd do 30 ml on Sunday and 25 ml on Wednesday.  Well, the first shipment they screwed up and sent me 3x20 ml.  Since you can't reuse the bottles, I had to do 40 ml Sunday and 20 ml Wednesday.  A minor inconvenience when what I wanted was to do 30 ml each day.  They'll have it straightened out for my next shipment.