I have pemphigus.
They believe it’s foliaceus as opposed to vulgaris but we’re waiting for the blood work to come back from the Mayo Clinic for a precise diagnosis, but they’re both bad, my internist hasn’t seen it in his decades of practice and it took four dermatologists to diagnose it.
Don’t look it up. That’s what the last dermatologist told me. She thought the spots were a drug interaction, but no, it’s pemphigus.
And if you can’t resist you’ll see a picture of a body covered with red sores. The bottom line is the immune system goes haywire and the element that holds your skin together doesn’t work so you get these blisters and they pop and you end up with what were first dime-sized red spots and then progressed to quarter-sized and now are silver dollar-sized if not larger. Yes, it’s painful, you have no idea, I have to sleep in my clothes, otherwise my sores open up and glue me to the bed sheet, and it’s also itchy, very.
So this all started in August. 2016. I got a red spot under my arm. I figured it was from the sling I was wearing as a result of my shoulder surgery. But then in October it spread to my nose. Which prompted the first dermatologist visit, a man who does house calls for household names. But nothing he did worked. He’d have me come back for free, to check on the spots, but every ointment he prescribed had no effect.
Then I went to Colorado and my skin went nuclear. I thought it was the long underwear, I was covered in red spots and the only thing that satiated me was an extremely hot shower, of a temperature no one takes. And I know you’re not supposed to do that, but that’s the amount of pain and itchiness I possessed.
So I trooped back to Beverly Hills and despite such obvious sores the bigwig’s treatment had no effect so I stopped, I figured I was just a winter thing.
But then I was sitting in front of the house after midnight scratching so much that I decided to write about it, and a tsunami of responses came in. Mostly mumbo-jumbo. Why is it the educated class doesn’t believe in science? That’s right, the right-wingers and poor will go to the doctor, assuming they can afford one, but the left-wingers believe vaccinations incite autism and that a home remedy is better than anything a doctor can prescribe. I know I’m pissing you off. Hell, I had confirmation of my diagnosis and a good friend told me to get acupuncture. Huh? I’m on the verge of suicide and I’m gonna pass up a western solution nearly guaranteed to work?
But the good thing about writing about my skin problem is another bigwig skin doctor who is a subscriber tracked me down, he agreed to treat me for free, but when he heard the name of dermatologist number one, he was blown away that that guy couldn’t fix it, he’s a legend.
So we started with ointments and injections and ultimately a steroid on the nose and there was improvement, but no resolution. The biopsy on my chest showed nothing and when he wanted to do one on my nose, which would leave a scar, however little, I moved on. I can handle a scar on my nose if there’s a solution, but so far there hadn’t been one, and I didn’t believe this test would show one either.
That was April and May.
In June, my internist suggested a third dermatologist. Who specializes in clinical trials and breakthrough products. The guy barely possessed a personality and gave my skin the most cursory look, but declared there was a drug that would cure me, Dupixent, you inject it every couple of weeks and in a matter of months you’re cured. Hosannas! Manna from heaven! Eureka! A solution!
But Dupixent costs 35k and my insurer wouldn’t approve it. I waited all summer, enduring three appeals, no dice. If only they saw my body! But then Regeneron, the manufacturer, said they’d give it to me for free, once all appeals were exhausted, even one to the government.
So I’m hanging in there. But the last week of August my skin was so bad I went back to this third doctor and showed it to him and he was not impressed. Gave me some cream for my eyes that didn’t work. Did I tell you I haven’t been able to wear my contacts for three weeks? I’m wearing my old Lennon specs from 1970, so if you see me…
So I’m waiting for the Dupixent.
But my skin is getting worse and worse.
So I go for my annual physical, and ignore those who say you don’t need to, this guy diagnosed my cancer, and he said my skin was “very impressive,” he suggested I go to an immunologist, so I made an appointment.
Meanwhile, I needed a colonoscopy, and this doctor gives you a ton of time, which you pay for, and the truth is there are two tiers of coverage in America and if you’re rich you get the better one. And statistics prove the poor lag in life expectancy, because they don’t get this level of treatment. And I’m not wealthy, but my health is the most important thing to me, so I’ll sacrifice for it. And the first thing out of the gastroenterologist’s mouth was, “What’s up with your skin?”
I told him the saga I just told you and he gave me the choice of two new dermatologists in the Cedars family and ultimately said he believed it was caused by drugs.
And the internist said the same thing and so did my shrink, so my hematologist agreed to let me stop my Gleevec for a month, the drug that keeps my CML in check, even though he believed that a rash would have occurred much earlier in treatment, but he went along with the plan.
He was right.
He’s the head of hematology at UCLA.
But now my shrink was freaking out, and the gastroenterologist told me dermatologist number four would call me but this did not happen and I didn’t push it because I’d stopped the Gleevec but I called him and he gave me number four’s name.
So I went to her two weeks ago.
She too thought it was a drug reaction. But then she asked me if I wanted another biopsy. So I asked her. And when she equivocated, I said “Let’s do it.”
That was the week when I had blood drawn three times in two days.
No, that was the week after, I’m getting ahead of myself.
So I’m in Ojai with my ringer off, writing about Coke, and I feel a buzz in my pocket. It was five on a Friday afternoon and the number had no name, but it did say “Beverly Hills,” so I picked up.
It was her.
The biopsy result had come in.
I had pemphigus.
So Monday I go to the immunologist, who doesn’t even charge me, because he’s an eczema specialist and if it’s pemphigus…in L.A. you see the appropriate person.
So I went for the Mayo Clinic blood test and then went to the hematologist. Who typed furiously and said little. Other than he’d spoken to dermatologist number four and she said to check for lymphoma.
He said there was no test for that, and the odds were low, but you never know.
So I was reeling, I was numb, if you wonder why I didn’t write for a few days, that was it.
But I had an appointment Monday, two days ago, with dermatologist number four to have my stitches from the biopsy removed.
She brought in another woman, both of these women are about forty, they studied under a professor at Johns Hopkins who’s the guru on pemphigus and this other woman is the go-to person for pemphigus and they said I should have Rituxan. And then debated whether to also give me this other treatment, with a three letter acronym I can’t remember. But they kept wavering whether to do it or not, it could have a ton of side effects, my kidney number is high and I’ve got CML. But if they gave me this treatment along with the Rituxan my skin would clear in two weeks. If I was just on the Rituxan alone, it would be 8-12! So I was not eager to let the three letter acronym go, but then they said it could be given at any time and I agreed, and also I’ve experienced some horrific side effects, someone has to, otherwise they wouldn’t be in the literature.
So they pulled some strings and I went for the infusion of Rituxan today.
They give it in the chemo ward. Actually, it’s mostly used for lymphoma. And it was in the office of the doctor who diagnosed my CML even though I passed him up for a specialist in leukemia, but the treatment room was huge, about fifteen stations, you know, those overpadded recliners, and the one thing that impressed me is they were so TOGETHER!!!
Unlike the facility where I got my back injections, which was so disorganized I almost bolted, not wanting to be another Joan Rivers, hell, the nurse poked me four times before she got a vein.
And I had to be there at 8. Which meant I had to wake up at 6:30, and if you know me that’s extremely rare, and I got to this office on Doheny and you’re never gonna believe it, they validated the parking, which no doctor in L.A. does, and I was there nearly all day, from 8-2:45.
That’s right, nurse number one said it would take five to seven hours. Huh??? Can I sit in a chair that long?
Actually, you can roll your station to the bathroom, where I had an accident, and almost fell over on the way thereto, and they’ll order you lunch, but first they give you steroids and Benadryl and that gives you…
Which was freaking me out, I couldn’t sit still in the chair!
But they said it would pass in an hour or so and it did.
And I brought a backpack full of reading material, newspapers and magazines, as well as my iPad and Kindle, but I was so fogged out I couldn’t read, but I couldn’t sleep either.
And they kept coming to talk to me. A nurse practitioner to go through every detail. A pharmacist. A nutritionist. A social worker. And then the doctor himself, who spent an hour with me, even though he wasn’t really treating me.
There was one hiccup. They recited a litany of things I should watch out for. Fever, chills, a rash on my chest… They’d start infusing the Rituxan slowly and then amp it up. And when they got to 100, out of a possible 200, I started to get this sore throat and some mucous and I was willing to endure it but they wouldn’t hear of it. They stopped the infusion, injected some Zantac and something else and we waited… For half an hour. And I’m restless, I wanted to get out of there at some point.
And after a third trip to the bathroom a nurse told me I only had 45 minutes left, which stunned me, since there was a bag still half full, but that’s only saline and…
They let me drive, although the doctor was hesitant because of the effects of the Benadryl.
And I was optimistic all until a couple of hours back, lying on the bed, finishing up “Breaking Bad,” you see I’ve got these sores on my butt and they’re oozing and… When I get up, it’s painful, because of all the sores on my body.
So I’ve got to have another infusion in two weeks. And then another in six months. They’re pretty convinced it will work. It’s an off-label use of Rituxan, which is expensive in itself, I can only wonder what the day in the ward cost me, or my insurance, you can just be wandering around and be hit by something, they don’t know how I got it, but Ashkenazi Jews are prone to it and…
Without health insurance I wouldn’t be going to all these doctors, even though I’m paying on top. And I think of all the people who just hunker down and ignore pain, like that guy I had dinner with last week who waited nine months and his kidney cancer spread so removing the organ was not enough and…
Hell, I’m not gonna lecture you. You seemingly can’t change anybody’s mind these days. No one believes in facts. And few have the perseverance to see four doctors for the same thing.
But it saved me.