Back Story
Day 1. Three weeks ago ( to the hour =:o ) I told Kathy that I’d seen a doctor for sores in my mouth that weren’t going away. {at that time I couldn’t say how long they’d been present… mental exercises since put it at ~6 weeks} That diagnosis was unclear due to lack of data…”it might be herpes” so she ordered HIV and herpes tests as well as scheduling an ENT in *10* days…
That evening my left cheek blistered.
Day 2. The next day, my right check blistered as well as acne like nodules showed up on my nose.
Kathy said, “let me look at your back.” (No she doesn’t remember why.) There were a handful of sores. Kathy’s immediate thought was “shingles” after I answered “yes” to “did you have chicken pox as a child?”
Day 3. Due to the appearance of the facial sores I tried communicating with the doctor. She was not in the office {it was Thanksgiving eve} and should they contact the on-call. Yes… That happened to be my primary care doctor Larson. He didn’t think it was shingles and said that if I were that concerned I should schedule another appointment.
Kathy used the online system to make an appointment for the day after Thanksgiving.
Day 5. That doctor said we were playing “stump the doctor” and she made an appointment for the following Wednesday {the earliest possible} with a dermatologist; that was the day before the previously scheduled ENT appointment.
Day 10. The dermatologist (Dr E) thought it was probably a staph infection and that the mouth and epidermis weren’t related. We thought that was wrong – too coincidental. He took more cultures. Gave me oral and ointment antibiotics.
I noticed in there somewhere that my jaw had swollen a lot. Yes, shaving hurts.
Day 11. The next day, Thursday, I saw the ENT nurse practitioner (follow up from the first appointment). Diagnosis remained unclear. I recall her saying trench mouth and that the antibiotics should help.
Antibiotics helped the jaw swelling but the facial and trunk sores continued to get worse and they were spreading.
Day 15. I called the dermatologist’s office Monday, telling his assistant that the antibiotics weren’t helping after 5 of the 10 day series. He was out so she would give him the message. Kathy took pix and sent them along with a detailed description of what we were experiencing to the dermatologist. I guess there’s some value in online communication with the medical profession…
Day 16. Kathy had scheduled an appointment for me with her acupuncturist. That session helped with the pain (I’ve been taking half a tablet of Kathy’s left-over Tramadol to sleep) and the next day the sores looked a little better. Dr E’s scheduler called back to make an appointment for Wednesday.
Day 17. That visit with Dr E involved taking 4 biopsies from my back.
Diagnosis, pending biopsy results due the end of this week: a rare auto-immune disease, pemphigus vulgaris.
Day 18. The follow-up biopsy with an ENT downtown was postponed, pending results from back biopsies. The consensus now: one problem.
Day 22. Today (12 December)
Even though the medical practitioners (in 2.5 weeks I’ve discussed with six (6) and seen five (5), five docs and a nurse practitioner) didn’t think the mouth and body were related – we kept saying “we think that they are.” Score one for the home team, we guess.
What is pemphigus vulgaris
The body’s immune system attacks the proteins that hold skin cells together. The dermatologist described it like this: visualize a concrete brick wall with mortar holding the blocks together. In this disease, the bodies immune system breaks the wall by attacking the mortar.
It can effect both mucous (mouth) and epidermis (skin), and it normally starts in the mouth and moves to the trunk. (This is my experience.)
It’s VERY hard to diagnose because it’s so rare and mimics many other skin infections (viral and bacterial). In his case, the process of elimination included tests for herpes, HIV and staph.
In all the research Kathy did based on symptoms, this one didn’t show itself.
How I’m doing
I’m on a medium-high dosage of prednisone. I’m using two steroid ointments: one for face and one for trunk; and I have a mouth wash.
First stage: stop new sores.
Second stage: “heal” the sores.
This can take a long time. Like a year.
Third stage: remission but relapses can be frequent with triggers being unknown.
Kathy thinks we’ll get to boost the oral dose because I continue to get new sores.
The sores are: on my back, shoulders, chest, sides, underarms, and face. As well as in my mouth.
That said, the existing sores do seem better. It’s hard to tell if that means anything, because prior to any treatment they would show up; *heal* by going away; but immediately come back in the same place and grow larger.
I tire easily. Sunday night’s pot roast was consumed very slowly. I’ve been eating soup and Isagenix shakes. Hard to eat when moving my cheeks causes pain. How much can you eat without moving your cheeks… =:o
There are other treatments, including a form of blood transfusion. Sometimes hospitalization is needed because the sores prevent eating – they can affect the esophagus and larynx. Then you have to put in a feeding tube.
Before the advent of steroids, the fatality rate was extremely high, either because the person couldn’t eat or because of dehydration/secondary infection.
Of course, there are numerous side-effects to long-term use of prednisone, as well.
We’re both scared … sticking to the routine seems to kinda help (1x/day salve on face; 2x/day salve on body; 4x/day mouth wash) and trying to learn as much as we can.
Thanks for listening
Mike, Kathy @ Katie