Yvette's Story

My story began about eleven years ago with a visit to my dental hygienist.

One area of my gums was raw and quite painful. My dentist was alarmed and wisely decided I should see an oral surgeon who took a biopsy of the area, and it was quicky determined that I had Pemphigus Vulgaris. The Oral Surgeon put it to me this way: The good news is that you do not have cancer--the bad news is that you have Pemphigus Vulgaris. Naturally, I had no idea what this was, and while he was able to tell me that it was an auto-immune disease--that it was generally treated with Prednisone, he unwisely said, and I know this in hind sight, that we do nothing except put a steroid cream on it and watch it. I realize now, that it is likely that his only acquaintance with Pemphigus was from his text books back when he was still in school.  His conclusion was that Prednisone might be worse than the disease itself. I went along with his advice, assuming that somehow it would go away on its own, by simply wishing it would.

Nothing much happened for many many months even while the area remained somewhat raw--but since it wasn’t overly troublesome I did not change the course of action. My regular dentist had the bright idea that if we removed the tooth in the area where the gum was so affected, that perhaps that might be a way to “get rid” of the Pemphigus. He opined that it might be the silver that was encasing the built up tooth that was causing the “irritation” and by alleviating that irritation the area might heal. And so the tooth was removed. Neither my regular doctor, nor the oral surgeon spent any time researching the treatment for Pemphigus,  or indeed the physiology of this disease, so they were unaware of the precautions that might be important to take. While there is no way that I can definitively say this caused my flare, it was shortly after the removal of the tooth that the disease moved from that small area in my mouth and began to attack my body. I was still in a state of denial, and began to try many sorts of alternative solutions, including vitamins, herbs and acupuncture, concotions made of terrible smelling roots. I wanted to believe I could take control of this disease without the aid of strong pharmaceuticals.

The area in question became larger and terribly uncomfortable, and then it turned to sheer and excruciating pain. It was then I realized I had no choice. The area was now infected and I had to seek medical attention immediately. Luckily I did have a diagnosis and I did find a Dermatologist who had extensive experience with Pemphigus. After a hosptial stay to cure the infection, I was put on 100 mgm of Prednisone. With the help of antibiotics and sitz baths I was soon made more comfortable, and the Prednisone began to calm my immune system down. Once my liver enzymes were normal, I was put on Imuran 100 mgm. I was doing well, but there were signs that I might begin to flare again, so the Prednisone was raised to 200 mg a day. Because of the six to eight weeks it takes for the Imuran to begin to function, I remained on that high dose for another two months. The side effects of Prednisone were intense and debilitating. The signs of Pemphigus were diminishing and so the slow tapering of Prednisone began about four months after I had started. First in increments of 20 mg a week, and then when the taper had reached 100 mg a day, the tapering was slowed down to five mg a week. Eventually Imuran was my only protection against a renewed flare. A weekly blood test was required to make sure that my white blood count remained healthy. After about one year, my blood count became more erratic and I was on and off Imuran depending on the results of the blood count. Eventually I felt sure that it was the Imuran that was causing me to have gastro-intestinal problems, resembling the symptoms for irritable bowel syndrome, so I took myself off Imuran permanently. While still on Imuran, and then once off it, I was plagued with what seemed like fungal infections of one finger and one toe. This was a very painful episode, treated with antibiotics. The ‘fungal’ infections persisted. My lips would occasionally bleed due to the lack of tissue integrity which is the how Pemphigus manifests itself. About three months went by and my doctor decided it was not wise to leave the situation alone, and having found through biopsy no signs of “fungi” in my nail tissue, felt that my body was having another auto immune response. He decided to put me on 40 mg of Kenalog (an injectable steroid) administered once a month. Over time my symptoms abated, and he very slowly, over the course of three years, reduced the Kenalog to the present dosage of 10 mg once a month.

So the initial disease: Pemphigus treated with Prednisone, had a variety of side effects.

Weight Gain

Moon Face

Extreme Neuropathy (loss of muscle strength)

Swelling of ankles and feet

High Blood Pressure

Higher than normal blood sugar

Thrush

Cataracts (does not get better)

Osteopenia (can get better with proper diet, exercise, Calcium, Mag. Vit D But cannot rule out the need for one of the boutique drugs designed for Osteoporosis--which also come with a cautionary tale)

Once I was no longer taking Prednisone, most of these terrible side effects did abate, but in their place my digestive system rearranged itself and I was continued to be prone to something that looked  and felt like a painful fungal infection, along with Raynauds Disease with accompanying chill blains (an auto-immune disorder as well) and finally a dysfunctional thyroid, which also was auto immune related. The conclusion I have drawn from these add-on conditions, is that we may well be prone to more than one auto-immune response. My very personal concerns were to avoid taking medications as much as possible. For the last three or more years, I have had no problems with either chillblains, or “fungal” infections, and only the tiniest hint that I ever had Pempigus. It shows up after eating something acidic--a small tiny blister may appear in my mouth and disappears within a few hours. It reminds me that I am still a Pemphigus survivor but not quite sure if full remission is possible. If I were to taper completely off the injection, would it matter? My doctor is likely to taper me once again in a month. So I may have a new chapter to write. Psychologically I feel very much like I am in remission. And to me, that is no small thing.

We all have things we feel comfortable with. Things that have worked and seem to do no harm. To keep myself healthy I have a few things that I do that I feel are essential.

One is to eat fresh food and keep my carbohydrates down.

Exercise in the form of walking at least three times a week.

I take supplements which I carefully chose by the manufacturers who are considered reliable. Of the supplements that I consider essential, the mega mineral pills which contain Calcium, Magnesium, Vit D, Zinc and others, in the appropriate dosages to compliment each other is a routine I am bound to honor. And for my digestive system, I take a probiotic occasionally and daily acidophilous. I am careful about not eating dairy. I do not eat fruit with protein, but wait for one hour before or after a regular meal. I do not drink water with my meal but wait for about an hour. I do exercises in the winter, simple yoga style exercises of swinging my arms and legs which has helped to keep the circulation in my hands and feet flowing. Along with the 100 swings which is actually invigorating, I keep my hands in fingerless gloves to keep them warm and to still be able to do what I need to do. In many ways, I feel that these conditions can find their roots in the onset of the original disease and that every benefit may well have a side issue that is not so beneficial. I have learned to understand that it is important to be vigilant and make every effort to understand the ways we are able to help ourselves. In tandem with the medical profession I believe that makes a very powerful team.

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