Category Archives: The Coaches Corners

Having a flare after being in remission can be a scary and frustrating experience. Thoughts run through your head about your previous experiences and you may wonder if your disease will be as bad as it was before. When you have the flare, it is important to recognize it and take the challenge head-on. It’s easy to become stressed from the uncertainty and lack of control, but remember that stressing will only make things worse. Here are some tips to reduce the intensity and time that you may have the flare.

1.      Schedule an appointment with your doctor immediately.

2.      Have your doctor give you a clinical diagnosis or get a biopsy done to confirm the flare. There are many differential diagnoses for your disease so you want to be sure it is what you suspect.

3.      Discuss with your doctor a treatment strategy and begin right away.

4.      Track your disease activity in a log, this will help you determine if you condition is improving.

5.      Follow up with your doctor regularly and advocate for yourself. Seeing your doctor every 4-6 weeks is recommended. If you have an aggressive flare you may need to see your doctor more frequently.

6.      If you need support, contact the IPPF and talk with a Peer Health Coach. Coaches are available to answer questions and help you decide how to best handle your flare.

It is common for flares not to be as intense as your first experience with the disease, but all patients have different experiences. The important thing is to be proactive and stabilize the disease activity as soon as possible. Flares are part of living with pemphigus and pemphigoid but if they are handled quickly and with a positive attitude you can eliminate them sooner.

Remember, if you have questions to “Ask a Coach” because when you need us we are in your corner!

I recently spoke with a patient who stated that his marriage was under a great deal of strain – which is highly understandable as the significant others of patients are the caregivers and are often in the line of fire, so to speak.

This was not the first time a wife or husband had confided this to me. Helplessness can cause patients and/or their caregivers great despair – to which wanting to run away is an understandable reaction.

Patients experience pain, embarrassment, and uncertainty when afflicted with P/P or other rare diseases.

The caregivers can empathize, the caregivers cannot truly feel what the patients are experiencing.

Everyone who is a caregiver tries his or her best to be supportive. Every patient who is undergoing this challenge is bound to be depressed and scared at times. Every family member may feel helpless most of the time.

This is the time to reach out and ask for guidance. Finding support groups is easier these days due to social media. Pemphigus Vulgaris is only one of 7,000 rare diseases that exist today and there are sources of information for each one of them. Search the Internet and contact local support groups. Check out the link given here for caregivers (It’s one of the very best!).

http://www.caregiveraction.org/

When you experience disease activity in your mouth it can be quite uncomfortable.  Patients may experience blisters anywhere inside the oral area: inside of cheeks, upper and underside of tongue, roof of mouth, and as far back as where the uvula is. The gums can peel as well.

Swallowing can be difficult. If this occurs for you, having anything soft is advised. For example, smoothies, yogurt, mashed potatoes, cream of wheat, etc. Avoiding citrus fruits is recommended, as that can agitate your oral lesions.

If your gums are peeling, ask your dermatologist if he/she can prescribe to you a topical corticosteroid. A ‘Magic Mouthwash’ can also be prescribed.

Try not to use alcohol-based mouthwashes as it can be uncomfortable to your lesions. Gentle toothpastes such as Sensodyne or Toms of Main can still be too harsh. If those products are irritating your lesions try going the old-fashioned route of using a paste of baking soda and water.

The use of straws is not recommended if you have flare-ups in the mouth as this can irritate them.

The IPPF suggests that you keep a food journal, so that if a flare-up occurs you can look at the list of foods you have consumed prior to the flare-up and determine which food or spice could be the culprit.

Keep your gums as healthy as possible by using a waterpik on a low speed, and use a very soft toothbrush. Regular dental checkups should be continued as normal, and if you’re going to have any dental work done advise your dermatologist. Depending on the level of activity you have and the medications you are taking, your dosage may be increased a few days prior and a few days after the procedure.  Advise your dentist of this, as well.

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

Mei Ling Moore – Peer Health Coach

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

While you are seeing a qualified dermatologist who is treating you for your Pemphigus Vulgaris, Bullous Pemphigoid, Pemphigus Foliaceus, Mucous Membrane Pemphigoid, etc. you might also be seeing your own dentist, OB/GYN, internist, ophthalmologist or ear/nose/throat specialist.

Please be sure that all of your doctors are aware of your condition and that they have access to your dermatologist.  It is important that they know the medications and dosage that you are taking for each medication.

All of your doctors need to be able to communicate with one another if necessary.  Being left in the dark will leave you at a disadvantage.  Also, if you are going to be scheduled for any major dental work, advise your dermatologist.  Depending on the procedure, your medications may be adjusted for a few days prior and a few days following to prevent any flare-ups.

Remember when you need us we are in your corner!

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!

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

Prednisone Tips

  •  Take as early in the morning as possible so as to avoid sleep problems at night.
  •  Supplementing a healthy diet with calcium will help to keep bones healthy through a course of prednisone.
  •  Reducing salt intake can prevent side effects associated with fluid retention.
  •  Taking it with meals could prevent stomach upset.

If you find that you are too energetic, you could try to:

  •  Do some deep breathing, yoga or listen to meditative music.
  •  Avoid caffeine after 4:00 or 5:00 P.M. to help avoid sleeplessness.
  •  Weight bearing exercises will help keep bones strong. If too difficult, stretching exercises in a swimming pool is also good.

When you need us, we are 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