Short story:
Had a bad week followed by a pretty good one.
Long story:
The Prednisone plus MMF (06Jan) did a number on my appetite. By the 16th I was eating all the time, due in part to my inability to recognize that I had eaten enough. I thought the bloated feeling I reported on the 18th was just the result of over-eating.
But on Friday 20 January, after neither Proselec nor Gas X provided relief from the GI pain and after consultation with Dr. O, I stopped the MMF. Went to Jack and Shasta’s joint birthday party on Friday; lots of people, great deviled eggs, Kathy got hooked on Palomas [1].
I drove Kathy into Seattle Saturday morning for the march. Dropped her off at Judkins Park about 9:15 and returned home. She used the Monorail + bus to get back to Lynnwood, and I retrieved her from the Park & Ride about 6:15 [2].
Sunday was a “rest” day for both of us. Kathy braved Costco on the weekend to pick up MiraLax, which turned out to be the key to getting my abdominal tract back on track.
Concerned at what feels like “old man legs”, I decided to use the exercise machine downstairs (rowing machine + stepper). On Tuesday, Kathy dropped me off at Abby’s for acupuncture on her way to work; the plan was I would take the bus home. Some time after leaving Abby’s, I realized that I had significant left groin pain. Walking was v-e-r-y slow.
The next day, both wrists started hurting in the same place, almost digitally. They were comfortable, then they weren’t. I continue to be challenged at holding things so cancelled my pool plans (regretfully) for the week/weekend. Implicated: my exercise.
Kathy reports that the lesions on my back and torso continue to improve in appearance, albeit slowly. One of the heaviest-scabbed sores was on my left collar bone; it’s now gone, leaving very pink – but visually intact – skin behind. One underarm has no visible lesions. The sores on my face are also shrinking in diameter. And there are no new PV blisters, although there is additional “Prednisone acne.” Energy levels remain unpredictable.
This morning, it had been a week since I stopped taking MMF. After a phone consultation with Dr. O, I’ve started it again (1000 mg). I have a better idea of what to watch for, so I don’t anticipate being in as much pain as I was last week. And I once again have been reminded of the importance of hydration. (Plus Kathy is urging me to take MiraLax daily, like she did after her colon resection.)
We see Dr O again on Tuesday. We should know by then if I’m going to be able to tolerate MMF or if we’ll try plan B. Right now, however, plan B remains a decision tree (three different paths of possible treatment, none mutually exclusive just different starting points). The goal is to find a steroid-sparing drug soon [3].
Good news! I ate a bowl of Thai coconut chicken soup (with baby carrots) Thursday night. Without running it through the blender! I’ve been eating grits and eggs, which is great, but the soup was a big milestone.
Aside: Katie had something like a “doggie neti pot” at the vet’s last Thursday (nasal wash under anesthesia). Didn’t help much, but the culture taken was (still) negative. So her respiratory issues (we are definitely a prednisone household, she has nose drops) remain non-specific.
[1] Paloma is a tequila-based cocktail featuring fresh squeezed red grapefruit and lime juices, sugar of some kind (we use agave), and sparkling soda (we use Grapefruit infused La Croix). Over ice in a high-ball glass lightly rimmed with salt. It’s also good as a “virgin”.
[2] http://wiredpen.com/2017/01/27/womens-march-a-reflection/
[3] What is a steroid-sparing drug and how do they work?
https://www.hopkinslupus.org/lupus-treatment/lupus-medications/immunosuppressive-medications/
http://dermatologytimes.modernmedicine.com/dermatology-times/news/clinical/clinical-pharmacology/steroid-sparing
https://www.ncbi.nlm.nih.gov/pubmed/23377396
Thanks for listening
Michael, Kathy & Katie