The beginning of the real battle with Pemphigus Vulgaris by Sabrena

Among the first things I did upon learning my health condition was to read up on as many literatures I could find on Pemphigus Vulgaris. I learned that this autoimmune disorder is the most serious form of the bullous disease affecting the oral mucosa. Luckily, its fatality rate is very low and it is non-transferable to another. The disorder is frequently misdiagnosed as gingivitis, mucous membrane pemphigoid and erosive linchen planus and though it can remain localized in the mouth, it could also extend to the skin, genital and eosophagal mucosa area – I am thankful that mine is still in the mouth.

Pemphigus Vulgaris has the potential to become fatal to its patients due to the overwhelming infection of the sores. Physically, it looks like a flat whitish blister in the mouth, covering the gums and lips. Mine even covered the under the tongue area (the floor of the mouth) and the insides of my cheek. Healing from these blisters take months. The question is, how do these autoantibodies attack in the pemphigus vulgaris patients? From what I gathered, these autoantibodies attack the ‘desmoglein’, a skin cell which acts like a glue, ensuring that each skin cell is attached to each other. Without the desmoglein, the skin cells become separated and the epidermis becomes ‘unglued’. This in return led to the acantholysis phenomenon which means that blisters were formed because the skin has been eroded and become fragile. In short, it is like using a watered-down glue to stick large numbers of paper. Nothing sticks or stays together and with a soft brush of the hand, the paper will start flying everywhere. In the case of the Pemphigus Vulgaris patients, the area affected will bleed.

To treat the condition I was in, I was put under a high dosage of steroids (60mg of prednisolone per day) to control the inflammation and Azathioprine, an immunosuppressive drug, commonly used to prevent organ rejection after an organ transplant and the treatment of a wide range of autoimmune disorders. Azathioprine suppresses the immune system at the bone marrow, which means it would have a dangerously long list of side-effects of long usage. Though the steroids were reduced by 10 to 20mg around every two months, I had a relapse when I was on the last 10mg. This brings me back to the dosage I first started in.

The relapse had affected my physical appearance to a great length. I started having continuous hungry pangs which made me eat and eat and eat. I tried to limit my food intake to vegetables and fruits yet the weight kept piling up and soon I was obese. My puffed-up appearance caused great concern. Though I tried to exercise every day, I was finding it harder and harder to breathe and move. I lost my balance when I did my yoga and I struggled to climb the stairs due to the knee and joint pains. Then, I noticed that my skin changed. Not only do I lack the lustre and glow; small veins started to appear; as if my skin is being stretched and they are painful too. I highlighted this to the dermatologist and he informed me that these are stretch marks. Frankly, I have heard of stretch marks, but to have them all over my thighs and upper arms is plain unacceptable.

Before Pemphigus, I am the one on the left. Mimi is the one on the right, in a dark brown blouse.

This is me after the first treatment. Notice the cheek got chubbier

In addition to this, I had hair in places I never thought possible for a female to have. I tried to laugh it off though. I told my friends that I was turning into a werewolf since hair is growing all over my face and neck. When I inquired about the hair to the doctor, he said that is a rather uncommon reaction to the medications (how quaint...I just have to be different all the way). With a hump growing on my back (another sign of prolonged use of steroids), I seriously felt unattractive. The only one who might take a second glance at me would probably be Quasimodo. Don’t think I should elaborate how these physical changes were affecting my emotional state of mind. I mean, we are born vain, it is one thing to be obese in a ridiculously short period of time, but to be an obese person with hair growing all over the face and a hump to boot...that is too much. This explains why I was grumpy all the time. I hated the stares I got every time I eat and the look my students or anyone for that matter were giving me (both sympathetic and disgusted stares). Sometimes, I felt like yelling at them, asking them to stop looking at me as if I am  freak! But then again, I was a freak. Here is a picture of me (before and after I was diagnosed in 2010).

This is me, under high dosage of steroids (again) during the relapse. My face felt sooo full and chubby every time I smile.    

xoxo,

Ms. Invictus