Roger's Story

2006:

In response to a letter he received from someone looking for information on pemphigus, Roger wrote the following response, which describes his experience and condition as of 2006:

Hello, my name is Roger and I am a 43 year old Air Traffic Controller from Newfoundland Canada. I am married with a boy 11, and a girl 9. I started having my first symptoms with PV in June of 2003. It started with blisters in my mouth, which would burst and create canker sores. These sores would take a while to heal, if they did at all. I never thought too much about them, for each summer I suffer from seasonal allergies, and I thought these might be connected with that. Things took a turn for the worse in July when I started to get a chronic sore throat. This was not like a viral sore throat, but instead felt like something was caught or cut in my throat, making swallowing very uncomfortable. When I saw my GP about this in August I was given several doses of antibiotics with no relief. We began to think there was a connection with my allergies and it might subside in the fall, but instead by September I was in really bad shape. Blisters would leave large white patches inside my mouth, on my tonsils and down my throat. My Doctor had no clue what was causing this, but she decided to give me a ten-day cycle of prednisone (35 mg. per day with a 7 day tapering to nothing). By the end of this cycle my symptoms had disappeared, and while we had no idea why it worked, I was so relieved I didn’t really care. For the following 9 months I had no more symptoms, other than a chronic issue with episcleritis in the whites of my eyes. Every six week or so my eyes would get red and painful, which would be temporarily controlled with steroid drops prescribed by my ophthalmologist. During one bad episode he actually injected Prednisone into my eyeball to clear it up. When I asked what could be causing this, he answered that I must be developing some syndrome that was affecting my immune system.

In August of 2004 the throat and mouth issues started again, first slowly and then as the summer ended I was in really bad shape. Involuntary swallowing during the night hurt so much I would wake up. I also began to get blisters on my scalp, which we both thought was psoriasis.The sores in my mouth looked so nasty my GP again tried antibiotics to clean them up, to no avail. In September again we tried another cycle of Predisone, with the same dosage that was effective the year before. This time it helped a little, but it never got rid of all the symptoms. I had blood work done for several things at this time, including a test for PV, which came back negative. By November my symptoms had become so bad my GP referred me to an ENT. He was perplexed with the cause, but prescribed me with two weeks of a swish and swallow concoction of steroid, antibiotic, antifungal, antihistamine and nystantin, which again provided some relief. When he looked at my scalp he called a Dermatologist that worked next door to take a look.

The Derm, Dr. Ananda, asked me if I had any other blisters on my body, which I didn’t. He gave me some topical solution for my scalp and told me to let him know if I had any further developments.

My condition stayed in control until February 2005 until I had a breakthrough. I was undergoing a vaccination program for my allergies when I began to get a few blisters on my back and arms. My GP saw them during my injection and alerted my Dermatologist. That day I had one of them biopsied, and two weeks later was told that I had PV. Dr Ananda is in his Fifties and has been in Newfoundland for 15 years. While he had seen PV in Sri Lanka years ago, he has never seen a case here. It was a relief in one sense to be diagnosed, but at the same time it was a very scary time. The more I read on the Internet about this disease, especially about the mortality, the more concerned I was. The pictures on the Pemphigus sights frightened me, because I couldn’t imagine my symptoms getting that bad. I immediately took action with my diet to eliminate the foods that I knew triggered some of my worst reactions. I eliminated salt, refined sugar, caffeine, spicy foods, processed foods, nitrates and alcohol from my diet. Part of the reason was to get my body ready for the onslaught of side effects from the steroids I knew I would have to start. However almost immediately I began to improve. My throat and scalp got better and I never had any new blisters on my body. I used a topical steroid called Ultravate on my old blisters on my body, which helped clear them up. My Derm. and I decided to wait on the Predisone and monitor my situation every 6 weeks.

It has now been a year since I was diagnosed and I am as good as I have been since the summer of 2003. I have the occasional blister in my mouth, but not in my throat. I also take Stresstabs ZBEC every day. I have no activity on my body or scalp. I have lost 22 pounds, and my blood pressure is 100/65. My eye problems have been gone foe 14 months. The bland diet is difficult, but the alternative is not attractive. I have had baseline tests for my eyes and a bone density test done in case I take a turn for the worse and have to start on Prednisone. I know it is probably not IF I’ll need them but WHEN. I am hoping that day is later rather than sooner. Until then I am fighting the disease on my terms.

As an update to this letter, Roger offered the following:

2009:

I have continued to watch my diet, exercise and take ZBEC every day. I also take an omega 3-6-9 and vitamin D (1000 mg daily). I occasionally get a small blister in my mouth when I eat something sharp or spicy, but not in my throat, which is the most important thing. I treat these areas with Oracort, which is a topical steroid, and within a week it is gone. I haven't had a blister on my body or scalp in 3 years. I see my Dermatologist every six months and I am still the only patient he has with Pemphigus.

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