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by Kirsten R Bellur

It is almost four years ago that, after many failed attempts, I was finally accurately diagnosed with Pemphigus. In the face of that solemn pronouncement, I was told there was good news: it was only Foliaceous, a more benign form, that was easily treatable with Prednisone. And under that treatment it would most likely go away. But this sanguine vision and mitigating explanation of the seriousness of the illness did not obviate the fact that I was unable to regain the integrity of my skin.

By Rebecca Berman, Janet Segall and Jean-Claude Bystryn, M.D. from The National Pemphigus Foundation and The Ronald O. Perelman Department of Dermatology, New York University School of Medicine, New York, NY. February 17, 1999

As many of you know, we recently conducted a survey of persons with pemphigus to find out 1) which treatments were most commonly used, 2) which appeared to be the most effective, and 3) which were most often associated with side effects. The survey was conducted by means of a questionnaire enclosed in the Fall 1998 issue of the National Pemphigus Foundation newsletter, the Quarterly. The questionnaire was also sent to all individuals who responded to a notice on the NPF website.A total of 110 responses were received. This number is impressive, taking into account the rarity of pemphigus. We thank all participants for their collaboration.

Following up Merck’s doctor-payment disclosures, Pfizer and GlaxoSmithKline posted their numbers. And perhaps befitting to the world’s largest drugmaker, Pfizer spent the most: $177 million was doled out to doctors in support for clinical trials and speaking fees. GSK’s payments were slightly less than half that, at a total of $85 million for trials and speaking.

For Pfizer, the lion’s share went to research; $108 million of its total spending supported clinical trials and related work. A chunk of the rest went to doctors for speaking on behalf of the company. Some 4,600 physicians collected a total of $34.4 million, or $7,400 on average. Then there was $18 million in free meals, $8.9 million in advisory fees (paid to 1,400 doctors), $5.8 million for travel, and $1.7 million for education.

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David Muhwezi, the 14-year-old boy whose body is covered in wounds, has been diagnosed with a rare skin disease, Pemphigus. According to the International Pemphigus and Pemphigoid Foundation (IPPF), Pemphigus is an autoimmune disease that affects the skin and mucous membranes.This means that the antibodies produced by the immune system to fight diseases mistakenly perceive skin cells as foreign and attack them. This causes burn-like lesions or blisters that do not heal naturally.

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Methotrexate is often used to control pemphigus and MedlinePlus lists some warnings you should be aware of. ALWAYS discuss your care with your physician before making any changes to your treatment.Methotrexate may cause very serious side effects. Some side effects of methotrexate may cause death. You should only take methotrexate to treat life-threatening cancer, or certain other conditions that are very severe and that cannot be treated with other medications. Talk to your doctor about the risks of taking methotrexate for your condition.

Read more information on Methptrexate at:

Through a series of Danish studies utilizing the nation’s comprehensive electronic medical and pharmacy records system, investigators concluded that more than one in three new prescriptions for creams and ointments for dermatologic diseases is never picked up. And for those who actually do fill their prescriptions, treatment adherence just goes downhill from there.

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A painting by Flemish painter Dr. Hugo Heyrman has forever changed how I now think of the stages of life.  The name of the painting which has touched me so deeply is “City Leaf”.  There is a special beauty in a single green leaf, that looks perfect, but is actually very vulnerable as it blows in the wind.  The leaf is, of course, already dying, but its special beauty in the moment is unmistakable.

We all know, on some level, that from the moment we are born we are dying.  This fact takes on a more special meaning when we are diagnosed with a serious chronic illness.  There is nothing pretty about these diseases when only observed medically, but we have choices:  We can either consider every day as another 24 hours moving us toward death, or we can feel even more alive and appreciate every day even more.  Yes, some days are definitely more challenging than others, but we have the choice of being even more grateful to be here and with constantly improving treatments adding to quality of life, or we can be resentful of things we may have to change and activities we may no longer be able to do.

As we (who live in geographical areas which have seasons) go through the summer months, with autumn approaching, we will soon see the beauty of autumn and the changing colors of the leaves.  I have vivid memories of the second skydive I ever did.  Just two weeks before the trees were all green and bushy; now it was late September, and I will never forget the sight below me when my parachute opened.  It was truly awesome, with all the trees below changing colors and those colors being so beautiful that they literally took my breath away.  It was a truly awesome and unforgettable site.

I mentioned this observation to a patient, about how beautiful the fall foliage was, and all he could think of was that they were dying.  He was unable to see the beauty in the moment.  Hugo’s “City Leaf” is still green and beautiful in the moment, but nonetheless dying, as all living things are.

Many physically healthy people reach mid-age (whenever that may be for any given individual) and only see their lives as half over – usually thought to be the best half.  For those of us with chronic illness, many of us are just so grateful to be alive and treatable that we more deeply appreciate every day we are given, once the illness is under reasonable control. We don’t think of our glass as half empty, but rather either half full or a glass that still contains water.  In a way, these illnesses help put things in perspective, much like that second skydive did for me.  There are so many more beauties in life than most people see. I think that was why the Tim McGraw hit song “Live Like You Were Dying” resonated with so many people.

“Mindfulness” can be thought of as the opposite of “mindlessness”, just going through the motions of everyday life vs. “being in the moment”.  For a number of years the psychological term “mindfulness” was just another catch phrase; however, now the research is proving to us that mindfulness cognitive therapy is having a great deal of validated success in a wide range of areas.  I always keep the lighting in my office low, with lamps versus overhead lighting, and there is always a candle on a table between sofas and chairs.  Sometimes, after teaching a patient to slow down and deepen their breathing, I will ask them to just focus on their breathing and the candle.  I will then systematically turn off all of the lamps.  Patients always report reduced anxiety and stress levels with just this one simple exercise.

As autumn approaches for many of us, and leaves change colors as they begin their fall from the trees, pay close attention to the beauty in the fall foliage.  Try to just stay in the moment, and you will experience a decrease in stress levels and intrusive thoughts.  You will be amazed at how easily this is accomplished.  Once diagnosed with your (or a loved one’s) illness it may feel like the autumn of your life.  Remember that after the leaves all fall and most trees are bare, the winter will lead into the emergence of spring – a rebirth in a way – with summer not far behind with its own special beauty.  Allow yourself to thoroughly enjoy the autumn season, knowing that it is taking us into a new season and that the cycle will continue.  Many people say that a picture is worth a thousand words.  In the case of “City Leaf” this is very true.

Focus on being in the moment and truly enjoy the pleasurable and beautiful ones.  Mindfulness is not just a psychological catchphrase, but a way of being in the world.  It adds to our lives.

Answers from the IPPF Peer Health Coaches

Q: I’ve heard of some success with tacrolimus ointment for BP — thoughts?

A: Some doctors report success with tacrolimus ointment for BP, that it can help limit the use of more potent topicals such as clobetasol, especially in atrophy-prone areas of skin (vulva/anal). However, also note its black box warning and side effect of malignancy risk. Albeit a controversial and by no means universally accepted risk, the FDA labeling remains. Discuss uses and side effects of this as compared to other options fully with your doctor.

Q: Which of the insurance companies cover newer biologic therapies and what can I do if mine insurance is resisting?

A: From what we know currently, although insurance formularies (list of covered drugs) change frequently, for IVIg; United Healthcare considers it experimental. If you are up for the fight, they will approve it on appeal. If prescribed, a Letter of Medical Necessity can be submitted for a special request, often granted. Blue Shield of CA considers it experimental as well. Some Medicare Part D plans will not cover at home. But Medicare will certainly cover it in the hospital. You can always call the IPPF and we can get you a referral to an insurance advocate if you are having trouble.
For Rituximab, most insurance companies will want justification, but most will cover in the end. Often what it takes is evidence in the form of scientific support — articles on research and treatment — soon data from the IPPF P-P Registry will likely provide evidence regarding its treatment benefit.

Q: I’m searching for a new calcium supplement and would appreciate your feedback. Due to having osteopenia, I am anxious to find a supplement that will be beneficial. Researching it online proved to be overwhelming. It seems like anyone and everyone are trying to sell the “best” supplement known to mankind. I want one that isn’t overly expensive, absorbable and possibly proven to promote bone strength and regrowth. All my docs recommended Fosamax, Actonel, Boniva and Citracal. I’d prefer not to go the Fosamax route.

A1: I had been told to take Calcium by my doctor because I have some Osteoporosis, and I found the best has been by Vitamin World. They make their own vitamins. I get 500 mg, absorbable Calcium with Vit. D. 1000mg, and have to take each one with my three meals a day. At the IPPF Annual Meeting we were told that our bodies can only absorb 500mgs. at a time, which is why it is taken with the three meals, and my doctors say I am in great health. I also take omega-3 at two of those meals, since it’s important, too.

A2: I like the Country Life brand of liquid calcium/magnesium/vitamin D. It is more easily absorbed since it is in a liquid form. I was also able to purchase the mineral Strontium by Boiron while I was in France. We (IPPF members in the Forums and Discussion Group) had a discussion about this mineral and its improvement of bone density several months ago. The strontium should not be taken within 2 hours of taking calcium. There are many places that sell Boiron supplements, but

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I have not seen that their Strontium products are available in the US, but maybe online? I, too, would avoid the bisphosphonates (Fosamax, etc.) due to rare but potential side effects such as atrial fibrillation (which my mom developed while on Actonel), and the potential jaw bone problems. Since you do not yet have osteoporosis, I’d give the non-prescriptive route a try.

Keep in mind that every patient reacts to medications and other solutions differently. Most of this advice is from PERSONAL experience and may not be appropriate for you. Discuss all changes you make to your treatment plan with your doctor.

Q: What is the Health Management Program (HMP)?:

A: The IPPF’s Health Management Program is a voluntary program with no downside or cost. All the data collected is confidential. HMPs help patients achieve better health and quality of life by increasing knowledge and awareness about pemphigus and pemphigoid issues, practices, and new developments. HMP Coaches (Marc, Yvette, Susan and Sharon) will remind you to discuss certain issues with the doctor such as bone density, lab tests, and eye exams.

Most useful for those new to the complexity of these diseases, the program puts an experienced P/P patient in your “back pocket”, giving advice, perspective and questions to ask your doctor. Enrollment is simple. You will be contacted by a Peer Health Coach who can answer your questions and provide you with the Enrollment and Consent Form. After we receive your consent form, your Peer Health Coach will call or e-mail you to set up an appointment to complete our initial survey which should take approximately 30 minutes.For more information visit

For those who are in good control and have a good understanding of P/P, you can give back to the IPPF and to those newly-diagnosed by participating in the Disease Registry. Also confidential, the data collected there illuminates areas of success (and lack) in treatment strategies and in fruitful areas of lab research. We need 1,000 patients to make statistically significant plans and there are just over 350 histories enrolled. Do make a difference for others even if you are feeling better at This data will give researchers a better chance to find treatments with less negative impacts for generations to come, and ultimately help find a cure.