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Results So Far

I had a follow-up appointment with Dr. Williams on July 17, 2014, one month after my first infusion and two weeks after the second. She looked at me and I swear her jaw dropped. She was amazed by how well I had responded. That was a fun appointment!

Jack Sherman 7

She had consulted Dr. Anhalt shortly before my treatment. Dr. Anhalt suggested going off of azathioprine a month after my second infusion (August 1), and to start a slow prednisone taper. I asked Dr. Williams if I should stop taking azathioprine now, two weeks before we were planning. We agreed I should stop taking it. One drug down!

Since then I haven’t taken azathioprine. Better yet, I’ve been on a continual prednisone taper. I started on 25 milligrams every other day. A week later, on July 23, 2014 (three weeks after my second infusion) I took these pictures. I was completely lesion free! I was ecstatic to say the least. This far exceeded my wildest dreams!

In January 2014 I am down to 2 milligrams of prednisone, every other day! This is the lowest dosage of prednisone I have ever been on. The best news is my skin is completely void of lesions. Sure I’ve had one or two minor ones, but nothing that doesn’t clear up quickly. Pretty amazing considering where I started.

I’m not claiming remission — yet! While it’s easy to be confident about my recovery, I prefer to say I’m very optimistic about my future living with pemphigus. What I have learned over the years about this disease is things can change pretty quickly. I could end up in total remission, or I could end up needing another round of Rituximab. Either way, I believe I will be better off than had I not opted for rituximab. For that I’m very grateful!

 Continued Support and Education

Each individual is just that, an individual. These diseases aren’t like more common diseases, like Type II Diabetes. If you go to 10 doctors after a diabetes diagnoses you will probably hear the same thing and expect the same results. With pemphigus and pemphigoid being rare, ultra orphan autoimmune diseases, your results and advice will likely vary.

Even though I’m a Peer Health Coach, Marc Yale has continued to be my coach. I can’t thank him enough for his time, knowledge and support he’s given me over the years. My goal is to help patients like Marc has helped me, and share this knowledge with them each and every day. Reach out to the IPPF and use its wealth of knowledge and patient resources. If you can attend the IPPF Patient Conference, I encourage you – I implore you – to go. The information and fellowship really does make a difference!

In the end, my biggest piece of advice to you is to be proactive in you care and treatment. Work with your physicians and create a team committed to your success. Share what you learn from your coach, attending a conference, or from a conference call with your doctor. Ask them to contact the IPPF who will connect them with a P/P expert. Whatever you do, it’s your health and quality of life at stake, so make informed, educated decisions. I did and couldn’t be happier!

Good luck, and good health to you all!

Part One
Part Two

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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

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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!”