Life with Mikey, 8

Short story:

Prednisone reduction continues. Taste buds still AWOL, but Friday I detected “sweet” (sorta). Energy levels continue to increase albeit gradually.

Long story:

The waiting took a new turn this week, after the Tuesday bi-weekly visit with Dr. O.

I’ve started the prednisone taper.

This taper isn’t anything like a prednisone pack — where you take prednisone for seven days, each day’s dose a little less than the day before. Nope. This taper is three months (you read that right) and not linear. But I’ve been taking high doses for almost four months, so the long phase out shouldn’t be too surprising.

Fortunately, Dr. O sent us home with a print out of the dose schedule. Kathy lamented that a digital version would have been more useful.

Turning to the big gun, Rituxan:

T and B cells make up our immune system; B cells, a type of white blood cell, in partnership with T cells make antibodies. When working as designed, antibodies neutralize bacteria and viruses. Some of my antibodies attacked the proteins that hold skin cells together. Hence the need for “immune suppression.”

Rituximab (generic name) is a genetically-engineered protein. The World Health Organization has it on their list of “essential medicines.” It kills all B cells that have CD20 on their surfaces. CD20 is implicated in immune disorders.

The Rituxan treatment (my two infusions) means that my B cells are less than full strength for about 180 days, with “about” meaning that everyone’s body is different.

I was surprised to learn that it’s been around a while. Its 1998 U.S. patent expired in 2015. However, concurrent with that potential alleviation of cost … Genentech (one of the two companies that market Rituximab in the U.S. and a subsidiary of Roche) reclassified it as a “specialty” drug, raising its price to hospitals. One infusion was $13K just for the Rituxan.

On the “what does wait and see mean” front … although I am still immune suppressed, Dr. O has released me to spend more time in crowds, using mask as appropriate. I still need to avoid babies/toddlers/germ carriers. Especially anyone with a cold. And be careful of anything that puts stress on joints (that’s the prednisone).

Our job (Kathy and me) is to monitor my body and mouth as we reduce the prednisone. The mouth sores have not gone away, but they are much reduced. My torso remains free of open wounds, although my skin is still discolored. My face still looks slightly sunburned.

Dr. O has had three pemphigus patients go into remission after one treatment of Rituxan and one patient who required two treatments. We are optimistic.


Kathy has joked that asking me what something tastes like is like asking a blind person for a reaction to a color. However, Friday’s night’s Celtic Cowboy dinner (BBQ pork, beans, slaw, cornbread) resulted in my commenting that the beans tasted a little sweet. Kathy agreed that they tasted more sweet than normal, then we all applauded my taste buds!


On the socializing front, we had Pho with Jack and Shasta two weeks ago; then Griggs was in town for a visit; and then we went to the ballet. I still haven’t resumed playing pool, but plan to do so soon.


Projects continue in Bellevue and Lynnwood. Doors, windows, lights, painting, flooring … where will it end? When will it end? LOL!

The rain hasn’t let up. Combined precipitation for February and March is the wettest in recorded history, with 16.16 inches (more than 2x average). The record, 15.55 inches, had been set in 2014. We still haven’t hit 60 degrees; we normally do that by the end of February. But the earliest-blooming azalea in the front yard is pink!


Thanks for listening

Kathy, Katie & Michael

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