Story about Pemphigoid .

Sean's Pemphigoid Story

May 29, 2017

By: smulhern


For about 1.5 years I was having two very strange health issues that my GP, Dentist and even an Ear\Nose\Throat (ENT) specialist couldn’t figure out:

1. I had a persistent bleeding nose. It rarely bled externally, mostly internally. It affected my sleep as my nose would clog-up with dried blood & I couldn’t breathe properly. Every time I’d blow my nose, the tissue would be mostly blood and very little mucous.

2. My gums were terrible. They constantly bled. Brushing\flossing my teeth was painful. My dentist & GP said it was due to not flossing and not brushing my teeth properly. I told them that I’m almost 50 years old, have an electric toothbrush and why all of a sudden are my gums bleeding all the time? In addition, I was getting these strange blisters in my mouth. They’d randomly appear on my tongue, cheeks and gums. They didn’t really hurt and when they popped it was like a salt-water-like substance coming out of them… weird. Dentist said it was part of having gum disease.

I was on a variety of antibiotics & skin creams for about a year. The nose issue never really cleared-up, my gums would be OK for a couple weeks, then the symptoms would return.

It wasn’t until my dentist advised me to see a Periodontist (gum doctor) that we figured-out what was going on & linked the two symptoms. The “gum dr.” looked at my gums and immediately told me that my gums are perfectly fine & that I most likely have an auto-immune skin disease. He got me an appointment to see a Dental Pathologist, who he interned with, within about two weeks.

The Dental Pathologist took a biopsy of my gums and ordered some extensive blood tests. Within a month, she confirmed that the biopsy was positive for PEMPHIGOID, but the blood test didn’t show anything. Not a clear diagnosis… Around this time, my chest, upper back and forehead was covered in the similar blisters that were appearing in my mouth. She originally thought that I had the Mucous Membrane version, but the blisters appearing on my forehead suggested Bullous. She immediately got me an appointment to see one of the best Dermatologists in Toronto.

The various Dermatologists didn’t really know what to do with me, at first. They were very aware of Pemphigoid, but not with the specific symptoms I was having… They did another biopsy, this time of one of the blisters on my back. They asked me how my eyes were and I said that my vision was getting a bit blurry and my eyes seemed to be more watery\itchy. After hearing that, they immediately put me on 60mg of Prednisone. I was very reluctant to go on Prednisone as I had an ex-girlfriend with Lupus who was on the drug and she eventually got diabetes from it… I was told that if I didn’t go on daily Prednisone that I’d probably go blind and I could die, if this wasn’t treated properly.

Right now, after about 4 months since "diagnosis", I’ve been weened down to 20mg of Prednisone and, on the advice of my Dermatologist(s), I just started taking “Myfortic Acid”. Myfortic Acid is generally given to people who’ve had a Kidney-transplant and they don’t want the body to reject the new organ. It’s supposed to be a lot better for me, than Prednisone. I move to 10mg Prednisone next month and then solely on the Myfortic Acid in March.

I’m supposed to go on a Rituximab IV, but I need 2x doses and one dose in Canada is $11,000. I have a company working with me and my corporate benefits to see if they’ll help me out with the $22,000 for the yearly Rituximab dose, that I’d need.

I feel OK. Yes, Prednisone sucks, I’ve gained about 50 lbs & feel like I sleep about 2hrs a night; but most of my symptoms have gone away, for the most part. The Dermatologists are still trying to figure-out the exact version of Pemphigoid I have and have made an appointment for me to see an Ophthalmologist to see if my eyes reveal anything. I’ve had my Shingles vaccination, TB tests and I don’t have Hepatitis. I have to do monthly blood tests and I see the Dermatologist every couple of months or so.

 

I’m generally happy with the health care I’ve received, thus far and very grateful for the related urgency I’ve been given. I’m mostly happy to finally know what is going on with my health & now realize that it’s very difficult to diagnose Pemphigoid.

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