Life with Mikey, 3

Short story:

Thanks to my brother in law for greasing the wheels at UW, nice to have a doctor in the family. 😉

After initial rapid response to boosted Prednisone and addition of Mycophenolate, body plateaued as far as sore improvement. Appetite, on the other hand, has continued to soar through the roof, in part because I’m not getting a signal from the stomach that it’s full. Whether this is the drug(s) or reduced saliva due to not chewing … unknown. Energy is better (fewer naps). I’ve regained a couple of pounds. And had my first setback.

Long story:

My appetite kicked off at Shasta and Jack’s on 06 January and has continued unabated (in the main, until Tuesday). I am eating a lot of grits and over-easy eggs … because I don’t have to run them through the blender. Yeah!

We both got flu shots on the 13th. That seems to have been a non-event (even with Kathy’s egg “allergy” that the nurse thinks is more accurately called “sensitivity”).

We went to Jim and Barb’s for movie night on the 14th. I did take a nap in preparation. A good time was had by all!

I’ve been working with Jay at the townhouse a bit without so many naps. So, progress. Still limiting contact with crowds and wearing mask when out (h/t AnnG).

Saw Dr. O on Tuesday. Now that I am an established patient (heh), no need for the cavalry in the exam room. Just Nik (the brand new guy on the 3rd) and Dr. O.

Kathy has been worried about what looks like new pin pricks/small pimple-like sores on my shoulders and flanks. Dr. O thinks it could be prednisone acne and not new PV blisters. So we’re moving ahead with the 03 January plan: today Mycophenolate was boosted from 500 mg 2x/day to 1000 mg. Prednisone holding at 120 mg. No changes in antibiotics, ointments, mouth wash.

Blood draw to check liver function against all the prednisone.

Go back in two weeks. At that point, the decision tree: continue this path (which will mean boosting Mycophenolate to 1500 mg 2x/day) or whack it with Prednisone pulse (which we think of as “prednisone chemo”). That may or may not be done as an out patient.

Kathy asked about Rituximab. Ooof. $20K. Insurance pre-approval (doh). Hospital stay. However. Literature and Dr O’s anecdotal experience show very high remission rates with Rituximab. That said, it falls in the “experimental” category for PV (like everything except prednisone).

Saw Abby in the afternoon for acupuncture. She taught Kathy how to “do” indirect moxibustion, which consists of applying burning dried mugwort (moxa) to parts of the body. Acupuncturists use moxa to warm meridian points and stimulate the flow of blood and qi. Moxa has helped with my mouth pain. So now Kathy’s going to do this in-between weekly visits to Abby.

Kathy’s marching on Saturday but I’m not. I may be the AM driver, though, because it’s not straightforward to get to the park where the event kicks off. She can get back to Lynnwood pretty easily with public transportation (monorail from Seattle Center to Westlake, then the ST512). No word on whether there will be extra buses … yes, Kathy asked Metro and ST (on Twitter, of course).

The setback:

Monday afternoon, I made my first fruit smoothie. I drank it about 2 hours before eating 16 oz of full fat Greek yogurt. An hour or so later, I felt bloated and uncomfortable. I lay down on the floor to try to stretch out my abdomen.

I felt better Tuesday morning – no pain – but ate a lighter breakfast than normal. Ate eggs again at lunch. Felt a little overfull but that subsided after acupuncture. Took boosted meds about 6 pm. Ate lightly around 8 pm. Went to bed about 9 pm. Was up at 11 with significant abdominal pain (7, mostly on the right side) and clearly distended abdomen. Kathy said it was much more swollen than when we did evening sore treatment (ointments). Through heat, breathing and ibuprofen, got it under control with Kathy’s coaching.

About 2 am, with the pain now down to a 1, I thought I should eat something since I’d had little to eat. So I made a room temperature protein shake. Went back to bed. Woke up about 1.5 hours later – pain was back. Again, heat and breathing allowed me to get back to sleep. Phone consult with Dr O’s office.

Abdominal pain/GI issues are common side effects of Mycophenolate so we get to figure out an eating regimen that minimizes whatever its doing to my abdomen.

Thanks for listening.

Mike, Kathy & Katie.

If you feel like reading: 😉

Diagnosis and treatment of pemphigus (2012, more technical)

PV and prednisone pulse therapy (2016, overview)

What is Rituximab and how does it work (overview)

Research on Rituximab and pemphigus

Reguiai Z, Tabary T, Maizières M, Bernard P. Rituximab treatment of severe pemphigus: long-term results including immunologic follow-up. J. Am. Acad. Dermatol. doi:10.1016/j.jaad.2011.12.019 (Epub ahead of print).

Kasperkiewicz M, Eming R, Behzad M et al. Efficacy and safety of rituximab in pemphigus: experience of the German Registry of Autoimmune Diseases. J. Dtsch Dermatol. Ges. doi:10.1111/j.1610–0387.2012.07931.x. (Epub ahead of print).

Kanwar AJ, Tsuruta D, Vinay K et al. Efficacy and safety of rituximab treatment in Indian pemphigus patients. J. Eur. Acad. Dermatol. Venereol. doi:10.1111/j.1468–3083.2011.04391.x. (Epub ahead of print).

Gianchini G, Lupi F, Masini C, Corona R, Puddu P, De Pità O. Therapy with rituximab for autoimmune pemphigus: Results from a single-center observational study on 42 cases with long-term follow-up. J. Am. Acad. Dermatol. doi:10.1016/j.jaad.2011.11.007 (Epub ahead of print).

Craythorne EE, Mufti G, DuVivier AW. Rituximab used as a first-line single agent in the treatment of pemphigus vulgaris. J. Am. Acad. Dermatol. 65(5),1064–1065 (2011).

Kim MR, Kim HC, Kim SC. Long-term prognosis of pemphigus in Korea: retrospective analysis of 199 patients. Dermatology 223(2),182–188 (2011).
Horváth B, Huizinga J, Pas HH, Mulder AB, Jonkman MF. Low-dose rituximab is effective in pemphigus. Br. J. Dermatol. 166(2),405–412 (2012).

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