Short story
On reduced prednisone; treatment door number three opens on Monday with an infusion of Rituxan (rituximab).
Long story
Since we checked in last, we have determined that Mycophenolate and I are not to be an item, whether as “acid” or “sodium.”
We saw Dr. O on Wednesday February 15, because Kathy had an election on Tuesday, Valentine’s Day. It was not a teaching day, because it was a Wednesday. So there was no resident interrogation. The door opened, and there he — and only he — was! [To say that felt weird is an understatement.]
He was pleased with my body’s response to prednisone RE the sores, but he was more than ready to get me off the high dose. He thinks my gut response (bloating and so forth) has been because of the prednisone, not the Mycophenolate.
To that end, he wanted me to immediately (the 15th) reduce my evening dose of prednisone, with my discontinuing the evening dose a week later. So I’ve done that; I’m now taking 60 mg/day in the morning. I’m sleeping much better as a result. Also, it is less difficult to drag myself out of bed when I awake.
Infusion is the next step for my treatment: the options were prednisone or Rituxan. After some discussion, we picked Rituxan. Dr. O has patients “in remission” after Rituxan; we have learned that “in remission” sounds more black-and-white (yeah! it’s over, so to speak) to a lay person than it does to a doctor.
The infusion is Monday afternoon, the 27th, at UW Hospital. We see Dr. O for our regular every-other-week appointment on Tuesday the 28th.
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For the time being, moving from “I can chew” to eating normal food comes with “I can’t taste anything” since my mouth has a constant cotton mouth feel. But I now make my own chia pudding! We have turned into a hippy-dippy household: chia and quinoa in Costco portions grace our pantry!
This past week Jay and I have been enjoying sausage and egg breakfasts started by my acquiring that Costco-sized Jimmy Dean sausage package. Kathy’s now eating the Alton Brown harissa scrambled eggs (sometimes) since she’s finally stopped showing a reaction to her flu shot. She made GF pancakes last Sunday; alas, I had bloating afterwards. Love them, but they are on the injured reserve list, so to speak.
The latest kitchen experiment is a “twice cooked” pork tenderloin recipe (Mark Bittman, NYT) that Kathy found for belated Valentine’s dinner. It’s made with a cream and Dijon mustard sauce, to which she added shallots and garlic. Costco had one pound bags of chopped-up cauliflower, designed for in-package microwaving. She added bacon, cheese, butter and a dash of heavy cream, turning it into “cauliflower as potatoes” (with a vengeance). We all think it’s awful (LOL – not!).
If I believe the scale, half the weight I lost is back. Unfortunately, the distribution is sub-optimal. I need a pillow to sit on my dinner table chair or on the floor: no more buttock padding. But I have a very enlarged (to my eyes) gut. Dr. O said that redistribution of fat is a normal prednisone side-effect. He also said part of the abdominal distention seems to be gas. Experiments at reducing it, to date, have failed.
However. since reducing the prednisone dosage, my mouth blisters/sores have changed; the progression seems to be in the wrong direction. In the last 24-48 hours, I’ve noticed that the discomfort in my mouth is getting slightly worse. 🙁
On the positive side, I can almost sleep through the night now. I’m getting about five hours uninterrupted sleep, so I’m not as tired (regularly). But continue to be challenged at maintaining an even energy level {ie knowing how much to eat when} which results in unexpected naps reducing my productivity and increasing flusterkation…
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We have been social butterflies of a sort. The ballet (last report) was fabulous! President’s Day weekend, Jay and I saw “The Wall” with Matt Damon on Saturday. On Sunday, Kathy and I saw “George Takei’s Allegiance: The Broadway Musical On The Big Screen” — this is about Japanese internment camps in WWII. And all three of us went to see “Hidden Figures” (NASA space program of the 1960s) on Monday.
Last Thursday was the third time at playing pool. I continue to feel off balance but mental processing of game strategy felt more normal. Thanks to my opponent being not quite on and my being able to see and execute to take advantage of his off-ness, I helped the team with a win. 😉
On Friday, Kathy and I were part of a “cooking class” (16 “students”) at The Pantry in Seattle. It was her third, my first. The topic: beef. Part of the class was lecture: techniques. The remainder included some hands-on work; we were responsible for searing the brisket and chopping garlic and fresh horseradish). We ate an amazing brisket that Kathy has pledged to make for us (probably with chuck, though); wonderful cast-iron frying pan prepared hamburgers (black garlic aioli and a poached red onion); and sous vide New York strip. Yummm!
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What does Rituxan do?
Rituximab is used primarily for non-Hodgkin’s lymphoma. It decreases the number of B-cells by targeting those that have a specific marker on their cell surface, CD20. It is thought that interfering with B-cell function can disrupt ANCA production. ANCA is an autoantibody that attacks healthy tissue and cells. Rituximab does not kill bone marrow T-cells. (We’re having a crash course in modern human biology.)
About infusions:
A 2012 study reported that a national registry focused on rituximab safety (pemphigus patients constituted 10% of treated cases) reported infusion-related reactions in 5.9% of patients. Many of these reactions are mild and require only a reduction in the infusion rate for mitigation. Fever and flu-like symptoms (body aches, chills, tiredness) are common side-effects. Some people have an allergic reaction during the infusion (skin rash, itching, wheezing or shortness of breath).
And, of course, there is a lowered resistance to infection.
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We promise not to take three weeks before the next report!
Thanks for listening
Kathy, Katie & Michael
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For more information ….
Treatment door number 3: rituxan infusion
— http://www.rituxan.com/hem/patient/what-is-rituxan
— http://www.rituxan.com/hem/patient/first-rituxan-infusion
— http://bit.ly/rituxan-in-pemphigus
Pemphagis is a genetic disease most common among Ashkenazic Jews. What is an Ashkenazi Jew? “Ashkenaz” in Hebrew refers to Germany, and Ashkenazi Jews are those who originated in Eastern Europe. The Ashkenazi genome comes from the Middle East and Europe (primarily Flemish). The two groups “fused” and created a population of 250 to 420 individuals. All Ashkenazi Jews alive today can trace their roots to a group.
http://www.latimes.com/science/sciencenow/la-sci-sn-ashkenazi-jews-dna-diseases-20140909-story.html
How to get started with sous vide cooking:
http://www.seriouseats.com/2016/01/first-thing-to-cook-with-sous-vide-immersion-circulator-essential-recipes.html
Kathy’s spreadsheet of journal articles/research:
http://goo.gl/QGwTXX