Short story:
Second derm doc visit since diagnosis (on 21Dec2016). He set the next appointment for a month. A month, really???
Doubled the prednisone prescription along with tripling dermatological ointment. Added antibiotic (cephalexin).
The past 10 days on upped prednisone levels are finally having a marginal impact. Dermatological sore creation continues, but the size (pinprick) is reduced; older, larger sores are showing slight improvement. Nothing has “gone away.” Mucosal pain continues about same level with pain coming from different places as sores seem to move… maintaining a count > 6
See specialist at UW Medicine on January 3.
Details:
When we briefly discussed the research we’ve found that shows initial protocol being prednisone at 1-1.5 mg / kg rate, VaMason doc response was “this is a complicated case.” However, he did not define what complicated means other than saying the biopsy results showed secondary infection. Duh, no skin/broken skin, no protection, infection follows…
The fact that we virtually had to insist on upping the prednisone stretches my belief in him. His focus is to get me off prednisone. Which to me means he’s focused past step one (stop new sore formation) which we have not yet reached. Stretching trust in him, number two.
Even after doubling the prednisone dosage, our calc’s show I’m at the low end for step one protocol.
Discussed pain. His answer Tylenol #3 {tried it… nice to get to sleep, however, waking up 4 hours later when it wears off doesn’t work for me}. And here’s the kicker: if I have mucosal issues, I’m see the ENT… this is a problem, since the ENT is deferring me to the dermatologist.
He said he’d send the Tylenol script to the pharmacy along with boosted prednisone, antibiotics, ointment. (Lack of conscious thought: prescribing the same volume of ointment for face/scalp as for entire body — even after we’d had to boost it when it was antibiotic ointment that did nothing.)
His assistant took out the biopsy stitches, set new appointment for four weeks after, then we went upstairs for blood draw. In other words we were in the clinic at least 40ish minutes after seeing him. Went to the pharmacy… not really noticing what we got. Kathy asked if I was gonna take pain meds… not yet. I’ll do that tomorrow.
Tomorrow came. It started with a phone call from his assistant asking how I wanted to get the narcotic prescription… by mail or come by and pick it up… Why didn’t you give it to us yesterday when we were there? I’ll come get it. Stretch number three.
Kathy got a list of local doctors that know about pemphigus from the International Pemphigus & Pemphigoid Foundation.
She sent emails asking basic questions to their respective offices Sunday evening 18Dec ~17:00. She got an answer from Dr John Olerud at UW on Monday morning ~08:15. In that correspondence he told her to call his assistant for soonest appointment, noting that she was out on Monday. When Kathy called Tuesday, she learned that Dr O had reserved 03Jan already. Does that work? Uh, yes thank you. Only two weeks during holidays… cool.
Since then we have had three people from three unrelated circles say positive things about Dr O.