Category Archives: Health and Lifestyle

by Barry Kratz

My name is Barry, and I was diagnosed with PV in June 1992 at the age of 22. I have been asked to share my story and give some insight to help overcome this sometimes-debilitating disease. I want to emphasize that what follows is my own experience. Treatments have likely changed over the years, so your experiences might be quite different. In addition, I've been told that younger people can get more serious cases that progress rather quickly compared to most people who get the disease in their 40s or 50s. My case was very difficult and took a long time to control. Thankfully (knock on wood), things have been going well for me for the past 7 years.

by Janet Segall, IPPF Executive Director

In order for patients with pemphigus and pemphigoid to get control of their disease, there are certain drugs that patients must take. Prednisone is the first drug of choice for treating these diseases. Immunosuppressive drugs are often given as well to help patients reduce the doses of corticosteroids (prednisone/prednisolone).

Prednisone (prednisolone) is one of the most successfully and one of the most commonly used drug for treating a variety of diseases, but it can have many side effects. Some of the effects of long-term steroid use on our health are: weight gain, increased appetite, loss of muscle mass and bone density, increased fatty deposits, reduction in zinc, Vitamin D, and C levels; loss of potassium, fluid retention, gastric problems, hypertension, high cholesterol, and hampering the body’s ability to handle blood sugars.

By Jennifer Romero, Licensed Clinical Social Worker

If you are a person with pemphigus whose condition is severe enough to prevent you from doing any gainful work activity, you could be eligible for assistance from the Social Security Administration (SSA).

Pemphigus is described in the SSAU Publication No. 64-039 Disability Evaluation Under Social Security, Section 8.03 (page 58) listing of eligible impairments. The language the SSA uses is: “Pemphigus, erythema multiform bullosum, bullous pemphigoid, dermatitis herpeti–formis. With extensive lesions not responding to prescribed treatment.”

Since Prednisone can cause water retention and puffiness, we need to keep our sodium chloride levels down, but not totally eliminated. Most people have been conditioned to a salty taste by nutrient-poor refined carbohydrates commonly known as snack foods. Sodium occurs naturally in foods and it is not necessary to add sodium chloride to foods to be healthy; quite the contrary.

What it does: Sodium and potassium need to be in balance so that nutrient and waste exchange can take place across cell membranes. Sodium is also necessary for the production of hydrochloric acid, the digestive enzyme secreted by the stomach to digest protein. It is required for the proper functioning of our nerves and the contraction of our muscles. It is also required for fluid balance, electrolyte balance and pH balance.

Too little sodium can cause impaired carbohydrate digestion, and possibly neuralgia. Dietary Allowance: Normal blood levels of sodium are 137-144. The estimated RDA for healthy adults is 500 mg. Some experts say you need 2000 mgs per day if under stress. Over 14 grams is toxic. One teaspoon is 2000 mgs, 1/8 teaspoon is 250 mgs.

Types of Sodium: Naturally occurring sodium in foods is desirable; table salt is not. Refined table salt is stripped of all its minerals except sodium and chloride. It is heated to high temperatures, bleached, treated with anticaking agents such as the toxic alumino-silicate. This prevents dissolution in the fluids in our system. The aluminum leaves a bitter taste so the manufacturers add dextrose, a refined sugar, which disrupts the body’s equilibrium.

Natural Sources: shellfish, carrots, beets, artichokes, kelp, and natural cheeses. Unrefined sea salt, or a rock salt called Real Salt. Both these salts contain naturally occurring iodine. Potassium, magnesium, and calcium counteract the effects of excess sodium.

Dangers of too much sodium: Too much sodium can cause a depletion of potassium, and often high blood pressure (hypertension), which can lead to stroke and heart failure. Excess sodium causes calcium to be lost through the urine, and can contribute to osteoporosis. The resulting fluid retention can also stress the heart and circulatory system. Bloating (edema) often causes irritability and depression. Headaches and migraines can be caused by eating substances with sodium such as MSG (which by the way, has excitotoxins which can damage and kill nerve cells), sodium sulfites, nitrates (usually found in luncheon meats), and nitrites. Salt has long been indicated as a cancer threat to the stomach, especially in collusion with other carcinogens, such as residues and smoke from barbecuing and grilling meat. Salt is an irritant to the stomach that can induce gastritis, increases precancerous cell replication and boosts the potency of chemical carcinogens causing stomach cancer, and ulcers. The American Heart Association reports that blacks have a greater sensitivity to salt and a higher rate of hypertension.

Foods with high sodium: luncheon meats, hot dogs, cured meats (such as ham, bacon, corned beef), ketchup, chili sauce, soy sauce, mustard, baking powder and baking soda. Ninety percent of the sodium Americans consume comes from processed foods. Just read the labels you’ll be shocked at the percentage of sodium. Sodium added because there is no flavor in the food to begin with and salt makes it edible.

Factors affecting need for sodium: Older people, overweight people, and people who have kidney damage are more sensitive to salt intake. Those that exercise a lot, live in high elevations, have vomiting or diarrhea and vegetarians (because of excess potassium) need more sodium. Check with your doctor. Exhaustion makes you want more salt to stimulate your metabolism, but it won’t help. Symptoms of low sodium levels: People under prolonged stress can have low sodium levels because of weakened adrenal glands. Symptoms are allergies, chronic fatigue, flatulence, low blood pressure, cold hands and feet.

If you crave salt it can be sign your adrenal glands are depleted due to stress. Snacks without much sodium: celery spread with unsalted nut butter, sliced jicama (marinate in lemon juice, later add chili powder, red pepper), veggies dipped in a yogurt and dill weed sauce, whole grain pretzels without salt, air popped popcorn with herbs (or cayenne, or chili, and canola oil) unsalted baked Tostitdos with low-salt salsa (tomatoes, scallions, chiles or jalapeno, red wine vinegar) tortilla chips dipped in warm refried beans, unsalted nuts or unsalted dry roasted nuts, low sodium bottled water (Evian) or seltzer, low sodium V8 or tomato juice with hot sauce.

Cooking: If you add salt after cooking, it will taste stronger and you can use less. Cutting down on sugar and alcohol can minimize salt cravings. Use lemon , mustard greens, or radishes for flavor. High sodium vegetables such as celery, carrots, parsley, chard, spinach, and kale can impart a salty flavor to cooked foods. Use fresh (under 6 months old) ground herbs and spices to jazz up foods. Fresh herbs can be frozen. Mrs. Dash (available in the spice section of your grocery) has a selection of salt-free seasonings, some are without garlic and onions for those who are sensitive. Herbed olive oil, or herbed vinegar (Spectrum Naturals have no added sulfites). Taste before you salt your food.

Your individual situation may require special considerations. Reasonable people will consult with their physician before making changes to their medical regimen.

Cold, refreshing and nutritious, smoothies are a great way to soothe a sore throat or just enjoy a warm summer day.

All you need is a blender and an imagination (We sparked our imagination by visiting our local smoothie shops and studying the combos on their menus). Enjoy!

Oh, and check with your nutritionist about your individual requirements. Bananas, for example, have potassium for those on Prednisone, but they are also high in calories too.  

Fruit Smoothie:

  • 1 frozen banana (best if cut into one-inch chunks, then frozen)
  • 1-3 ice cubes
  • 1/2 – 1 cup of fruit
  • 1/4 to 1/2 cup of nonfat yogurt or ice milk. (*For an extra-nutritious smoothie, use 1/4 to 1/2 cup of orange juice or soy milk instead)
  • Add ingredients in a blender and blend until smooth. It’s that easy.

Try these suggestions or make up your own variations:

One cup of any of these easy-to-find fruits: strawberries (hulled), peaches (fresh or canned), apple slices (or juice).

Not-so-easy to find, but worth the effort, are these exotic combos:

  • Tangerine and mango nectars
  • Mango, papaya, honeydew and cantaloupe
  • Peach yogurt with pineapple, orange and banana juice (avail- able premixed in juice section of your local market)
  • Kiwi, strawberries and pineapple juice
  • Apricots, mango and lemonade
  • Papaya, raspberries and any juice

Feeling festive or daring? Add cinnamon and/or nutmeg, cloves, ginger or vanilla. Protein powder and wheat-germ work also.

Don’t forget your veggies! If you have a juicer try this one: Juice from 5 or 6 carrots (2 cups) 1 1/2 to 2 cups of yogurt (plain, vanilla or flavored) 1 banana, fresh or frozen Several mint leaves.

Hot smoothies?! Those having trouble eating regular food can use a blender to make eating any food easier.