Author Archives: Marc Yale

You just left your doctor’s office, and you’ve been told that they want to try Rituximab (Rituxan/Mabthera). Most likely, the doctor explained how the treatment is a B-Cell inhibitor, and that it is a very targeted therapy designed to eliminate those cells in your body that are attacking the proteins in your skin. Your doctor has informed you that it is an infusion, reviewed the treatment schedule and protocol with you, possible side effects, and answered any other questions or concerns that you have. Your doctor most likely forgot to tell you about one very important aspect: How will you know if the Rituximab is working?

If the Rituximab is supposed to eliminate your B-Cells then it should be measured exactly that way. Ask your doctor to perform a baseline test to determine you B-Cell (CD20) count prior to your first infusion. A follow up test should be done at the conclusion of each treatment cycle to measure the decrease in your B-Cells. Remember, it may be necessary to have several cycles to eliminate these cells but the best way to check is a simple blood test.

Along with this B-Cell baseline test, it is recommended that your physician performs a thorough pre-treatment screening including:

Your Medical History – Any history of cardiovascular or pulmonary disease, recurring infections or allergies.

Physical Examination – Review all medications and possible contraindications.

Other tests should include; Chest X-ray, routine blood test, Hepatitis B screen, and immunoglobulin levels

Our disease and the treatments can be confusing, so if you’re not sure just “Ask a Coach”!

Remember, when you need us we are in your corner!

Marc Yale – Certified Peer Health Coach

Many times when seeing a physician for pemphigus or pemphigoid they are quick to prescribe a systemic treatment that will hopefully help you reach remission. This can be a good thing. However, sometimes the obvious may be overlooked.  For example, if you are in pain,  having trouble eating or swallowing, your clothes are sticking to your lesions, the blisters on your scalp make bathing and showering difficult, or perhaps you are having chronic nosebleeds. These symptoms can be managed with topical treatments, but they are often forgotten. There are different options available for different body locations in many different strengths. Be candid with your doctor and let them know where you are having disease activity and how severe it is. Although, ultimately, the systemic treatment is going to make the difference in the long run.  Topical treatment can help relieve many of your symptoms along the way!

If you’re not sure which medications to ask for or their strengths, just “Ask a Coach”!

Remember, when you need us we are in your corner!

With pemphigus and pemphigoid, painful oral lesions frequently occur in the mouth and throat. This causes difficulty when drinking or eat- ing solid foods. Let’s face it — it can be just painful! Assessing your individual tolerance to foods and ad- justing what you are eating will enable you to bet- ter understand which foods to eat and which foods to avoid. For many P/P patients, highly seasoned, acidic, or salty foods are irritating. As are foods that are dry, sticky, or abrasive because they can be difficult to swallow. Extremes in temperatures of liquids or sol- ids, such as ice cream or hot chocolate, may cause pain for some. In the case of severe mouth sores, I recommend using a blender or food processor. Here are a few helpful hints to remember:

  •   Drink liquids through a straw.
  •  Cook coarse or hard foods, such as vegetables, until they are soft and tender.
  •  Soften or moisten foods by dipping them in gravies or cream sauces.
  • Sip a beverage when swallowing solid food.
  •     Eat small meals more often instead of one large meal.
  • Rinse your mouth with water while eating (or use water, peroxide, or Biotene afterwards).

• Remove food and bacteria to promote healing.

Having oral lesions can present many challenges including; pain manage- ment, oral hygiene, nu- tritional intake, and your overall health. Speak with your doctor about ways to help relieve the pain. Also make sure they monitor your blood sugar levels if you are taking systemic steroids. Don’t for- get to inform your dentist of your condition and ask them to use caution when treating you. If you have difficulty swallowing, or find yourself frequently choking on food, talk to your doctor. You may want to ask to be seen by an ENT to help deter- mine the extent of your disease activity. With pemphigus and pemphigoid, the mouth is one of the most difficult areas to treat and requires due diligence. Changing your behavior and habits can be the biggest “pain” but will eventually pay off. If you need help, encouragement, or suggestions… just “Ask a Coach!”

All it takes is the slightest bump up against an object, just a few too many minutes in the sun, eating something that is hard and sharp or even the force of water pressure coming out of your shower head to cause trauma to your skin tissue.  This trauma creates a reaction in your body’s immune system and before you know it a blister or lesion has appeared. So does this mean that you can go out in the sun or do normal activities that most people do? No, but as a patient with pemphigus or pemphigoid it is recommended that you be more aware of any activity that may cause trauma to your skin tissue.  If you have to ask, then you probably already have the answer and you should avoid it and if you are not sure…“Ask a Coach!

Remember, when you need us, we are in your corner!

Marc Yale

Certified Peer Health Coach

Although everyday (whether I like it or not), I am reminded what it is like to live with Pemphigus and Pemphigoid, I am fortunate because I have the opportunity to share my story and build relationships.

Recently, the IPPF has welcomed two new Peer Health Coaches to our team, Mei Ling Moore (Los Angeles) and Gloria Gutierrez (Orlando). They both have been providing support for our community members for quite some time so it seemed only natural for them to volunteer as Peer Health Coaches. Both are compassionate listeners who actively participate on the IPPF website and Facebook page, communicate well with those that need support, provide relevant resources designed to improve patient/caregiver issues and make a difference in people’s lives by building long-lasting relationships.

I had the honor of seeing them in action recently at our annual Patient Conference in San Francisco and was amazed at how well they both provided confidence and hope to everyone they spoke with.

Please join me in welcoming Mei Ling and Gloria, and feel free to reach out to them for peer advice.

Remember, you always have a “Coach” in your corner!

With Pemphigus and Pemphigoid, painful oral lesions frequently occur in the mouth and throat causing difficulty with drinking and eating solid foods. Let’s face it, it can be just painful! Assessing your individual tolerance to foods and adjusting what you are eating will enable you to better understand which foods to eat and which foods to avoid. For many, highly seasoned, acidic, or salty foods are irritating and those foods that are dry, sticky, or abrasive can be difficult to swallow. Extremes in temperatures of liquids or solids such as ice cream or hot chocolate may cause pain for some. In the case of severe mouth sores, use a blender or food processor is accessible.

Here are a few helpful hints to remember:

  • Drink liquids through a straw.
  • Cook coarse or hard foods, such as vegetables until they are soft and tender.
  • Soften or moisten foods by dipping them in gravies or cream sauces.
  • Take a swallow of a beverage with solid food.
  • Eat small frequent servings rather than a large amount of food at one time.
  • Rinse your mouth with water, peroxide, or Biotene during and after eating to help
  • Remove food and bacteria and to promote healing.

Having oral lesions can present many challenges including; pain management, oral hygiene, nutritional intake, and your overall health. Speak with your doctor about ways to help relieve the pain and ensure that they are monitoring you blood sugar levels if you are taking systemic steroids. Make sure that you inform your dentist of your condition and require them to use caution when treating you.

If you have difficulty swallowing and find yourself choking on food, see your doctor immediately. Ask to be seen by an ENT so they can help determine the extent of your disease activity. The mouth is often one of the most difficult areas to treat and requires diligence. Changing your behavior and habits can be the biggest “pain” but will eventually pay off. If you need help, encouragement, or suggestions…just “Ask a Coach“!

When you need us, we are in your corner!

Marc Yale – Peer Health Coach

People with chronic health conditions like Pemphigus and Pemphigoid are more likely to have vitamin and mineral deficiencies. This deficiency can be from the disease itself, the regimen of medications that you are on or even from the change in your lifestyle after being diagnosed.

Our bodies absorb vitamins and minerals from the foods that we eat and often our diets change dramatically after being diagnosed with Pemphigus and Pemphigoid. If we have oral involvement, we have a tendency to choose foods that are easy to digest and swallow.

The following is a discussion regarding some of the most important vitamin and mineral supplementation needed for Pemphigus and Pemphigoid patients. Vitamin and mineral supplementation is very important to keep your body operating properly.

Vitamin D: One of the most important vitamins needed for Pemphigus and Pemphigoid patients as the combination of lack of sun, the use of Prednisone and even the disease itself can deplete the body’s absorption of this vitamin.

Calcium: If you are taking Prednisone you should ask your physician about a Calcium supplement as Osteopenia and Osteoporosis are common.

Iron: Fatigue is a direct result of Pemphigus and Pemphigoid and can also often be caused by lack of Iron in our diets. Some medications (Dapsone) that are used for the treatment of your condition can also cause Anemia or lack of Iron in your blood.

Here is a list of other vitamins and their uses that may be helpful and you should ask your physician about:
Vitamin A (Retinol): The body uses vitamin A to form and maintain teeth, mucous membranes, skin and hard and soft muscle tissue.

Vitamin B3 (Niacin or Niacinimide): Vitamin B3 reduces low-density lipoproteins or bad cholesterol and fibrinogen, which may contribute to inflammation.

Vitamin B7 (Biotin): Supports healthy hair and skin by helping process proteins.

Vitamin B9 (Folate or Folic Acid): Helps with Anemia, especially in patients using Methotrexate.

Vitamin B12 (Cobalamin): Helps maintain healthy nerve cells and red blood cells.

Vitamin C (Ascorbic Acid): The body uses vitamin C for iron absorption and collagen, bone, cartilage, muscle and blood vessel formation.

Vitamin E (Tocopherol): substances that damage cells by steeling electrons and destroying cellular DNA. Exposure to environmental toxins such as sunlight and tobacco smoke may trigger free-radical formation in the body. The body also uses vitamin E to form red blood cells and absorb vitamin K.

Vitamin K (Phytonadione): Your body stores vitamin K in fatty body tissues. Clinicians may use vitamin K to control the effects of anti-coagulant medication. This vitamin also supports healthy bone structure.

Zinc: Zinc regulates protein synthesis, growth development, and wound healing.

Magnesium: Involved in cellular energy production, bone structure, and nerve and muscle function.

These are just some of the vitamin and mineral supplements that can assist you with managing your condition. Remember that it takes a multi-faceted approach to improving your condition and that supplements may only be part of the solution. Please check with your physician regarding these vitamins and minerals and the amounts that they recommend before using them.

When you need us, we are in your corner!

Marc Yale – Peer Health Coach


As a Peer Health Coach with the IPPF, I am often reminded how fortunate that I am to be able to speak with so many individuals who lives have been affected in so many different ways from Pemphigus and Pemphigoid. I am able to take these collective experiences and pass them on to others in the form of recommendations, suggestions and advice. Even more amazing is the fact that the IPPF has four Peer Health Coaches doing this simultaneously!

This year your coaches have collectively worked with over 200 people answering questions, looking for physicians, helping with problems, providing educational information and providing peer support. Your coaches often discover fantastic “pearls” of information and have become great resources for all of us managing our conditions.  To help pass along some of this great information we have created “Coaches Corner”, where your coaches can share knowledge about Pemphigus and Pemphigoid to help you improve.

Recently, I had some one ask me about being a blood donor which was something that I had done regularly prior to being diagnosed and had often wondered if I would be able to do it again. I found that according to the American Red Cross, you are not eligible to donate blood if you have some types of generalized autoimmune disease including systemic lupus erythematosus and multiple sclerosis (Since Pemphigus is so rare it is not mentioned). They also provide the following guidelines:

  • “To give blood for transfusion to another person, you must be healthy,
  • be at least 17 years old,
  • weigh at least 110 pounds,
  • and not have donated blood in the last 56 days.”

“Healthy” means that you feel well and can perform normal activities. If you have a chronic condition such as diabetes or high blood pressure, “healthy” also means that you are being treated and the condition is under control. Other aspects of each potential donor’s health history are discussed as part of the donation process before any blood is collected. Each donor receives a brief examination during which temperature, pulse, blood pressure and blood count (hemoglobin or hematocrit) are measured.”

So based on those guidelines, I would not recommend giving a blood donation unless it were for your own use. I would, however, check with the local blood collection agency you are considering just to make sure.

Although I was slightly disappointed with what I found because I was hoping that I would be able to give blood, the knowledge that I gained by doing a little research was helpful. I also found some satisfaction in knowing that I can donate blood to help with Pemphigus and Pemphigoid research. Perhaps that is the best way to donate blood as someday it may lead to a cure!

Thanks for all your support,

Marc Yale
IPPF Certified Peer Health Coach