Yearly Archives: 2003

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, and 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 steroids can have, due to long term 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 problem, hypertension, high cholesterol, and the body's ability to handle blood sugars.

by Jennifer Williams

As all pemphigus and pemphigoid sufferers are quite aware, high doses of steroids are generally used in the first phase of treatment to control the blistering. Often to relieve the unpleasant side effects of such great doses, an immunosuppressive drug (used to prevent production of antibodies) is added into the mix to lessen the steroid dosage. As the side effects of steroids subside, patients are faced with a new challenge: coping with side effects of the immunosuppressive drugs.


by Rosalind Joffe

  1. Focus On What You Can Control. You may not be able to control the course of your illness. You can control the direction you take and the choices you make regarding that illness in the workplace.
    View your chronic illness as a challenge to meet, not an obstacle in the way.
  2. Ignore The Nay Sayers. Many people will tell you that work is stressful and that rest is best for people with chronic illness. Ignore them. Unpleasant work or too much work is negative stress and it can be bad for anyone’s health. Yes, you have more challenges now than you did before, but throwing in the towel is not the only option.
    Shape your work environment to meet your needs and you’ll help yourself.
  3. Come Out Of The Closet. Chronic illness is nothing to be ashamed of. If your illness impacts your work, keeping it a secret depletes your precious energy and gets in your way. Maintain your right to privacy and be judicious with your information, but don’t take on the burden of pretending that you don’t have a chronic illness.
    Be as public as you need to be and as private as you want to be.
  4. Don’t Just Survive – Thrive. It’s easy to feel that survival is enough. And most people who love you won’t expect more from you than that. But chronic illness or not, you weren’t born for mediocrity. Raising the bar doesn’t mean doing more than you can; it means aim high and seek what you need to thrive.
    Reach beyond relief; go for the satisfaction.
  5. Control The Message. Other people on the job will be looking to you to set the tone, and you can influence the way they respond to your illness. Design and control your message: What and how much do you want to say? Who do you want or need to say it to? When and where do you want to talk?
    Get out in front of the conversation.
  6. Don’t Let Your Illness Define Who You Are. Some people might try to paint you as a martyr; others may consider you less worthy of recognition or promotion. Neither extreme works to your advantage; each gets in your way. The message you want to convey is that your chronic illness is simply one of several cards in your deck; just like everybody else.
    Having a chronic illness is neither a source of shame nor a source of pride.
  7. Look for the Silver Lining. Although you may not believe it now, workplace success in the face of illness is transforming. Many of us have found new strength and confidence – qualities we never knew we had – as a result of our illnesses. We have used this new found power to face other life challenges.
    It need not all be about the bad news.

Rosalind Joffe, M.Ed.

Thank you.

Rosalind Joffe coaches individuals to thrive in the workplace. Drawing on 25 years of work experience, living with chronic illness, she helps others to prosper in their work. Rosalind holds a B.S. in Communications and an M.Ed. from Boston University, Executive Coaching Certification from the Corporate Coach Institute, and Family Mediation Certification from Academy of Family Mediators.


©2003 Rosalind Joffe. All rights reserved. PLEASE SHARE THIS, with attribution, in its original format.

by Sarah Brenner, MD, Jacob Mashiah, MD, Einat Tamir, MD, Ilan Goldberg, MD and Yonit Wohl, MD, Department of Dermatology, Tel Aviv Sourasky Medical Center, and Sackler Faculty of Medicine, Tel Aviv University, Israel

Pemphigus is generally considered to stem from a genetic predisposition to the disease triggered and/or aggravated by one or more external factors. An acronym has been suggested from the name of the disease, PEMPHIGUS, to encompass those factors:

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.

The Foundation is pleased to report that the National Institutes of Health (NIH) has just released an Autoimmune Diseases Research Plan encouraging research into the causes, treatments, and prevention of autoimmune disease, including pemphigus.

This Plan takes us a giant step closer to getting additional funding for autoimmune disease research. Congressional approval is now needed to implement and fund the Plan. The Foundation is asking everyone to advocate for this Plan by contacting their Senators and Representatives and urging them to support it. This effort is being coordinated by the American Autoimmune Related Diseases Association (AARDA), which worked closely with NIH on the development of the Plan. Virginia Ladd, Executive Director of AARDA, said: “It is important for all patients with any autoimmune disease to fight for funding for this plan. Supporting autoimmune disease research will help all patients, regardless of their particular illness.”

by Dr. David Rowe, DC, Dr. Nicholas Hall, DC

The following article is one in a series we are publishing about complementary medical approaches to living with pemphigus. These treatments are not meant to replace the therapies administered by your physician.

What is Chiropractic?

Chiropractic is a drugless healing art built on a very simple principle: the body is a self-healing, self-regulating organism that is under the complete control of the central nerve system. When vertebrae of the spine misalign and lose their ability to move freely in all directions, they often put pressure on the delicate nerves that carry vital nerve impulses from the brain to the body. This condition is called a Vertebral Subluxation Complex (VSC), and is the cause of many of the unwanted conditions that people suffer from every day. In fact, the damaging effects of VSC are further reaching than most people are aware of, and although chiropractic has come to be a mainstay for the treatment of headaches and musculoskeletal conditions such as low back pain and neck pain, the importance of us all maintaining a healthy spine has become more apparent as research continues to reveal the devastating effects of VSC on our health.

by Edward Tenner, M.D.


The autoimmune bullous skin diseases, pemphigus (with major subsets pemphigus vulgaris, pemphigus foliaceus and paraneoplastic pemphigus) and the more common bullous pemphigoid (with variant disease phenotypes of cicatricial pemphigoid and gestational pemphigoid) each may have ocular manifestations.

by Dr. Neal Halsey, Department of International Health, Johns Hopkins School of Medicine, and Dr. Noel Rose, Autoimmune Disease Research Center, Johns Hopkins University

1. What is the risk of developing smallpox?

Smallpox does not exist as a naturally occurring disease anywhere in the world. The only risk of smallpox would come from the use of smallpox as a weapon of bioterrorism. Government security experts believe that bioterrorists in several countries may have smallpox. No one knows for certain whether or not they have smallpox or if smallpox will be used as a weapon. Most infectious disease experts believe that the risk of any individual being exposed to smallpox is extremely low.

2. How good is this vaccine?

No vaccine is perfect. The smallpox vaccine provides approximately 95 percent protection against smallpox. This is about as effective as most other live viral vaccines.

3. What kinds of adverse reactions can occur?

The smallpox vaccine causes a local infection on the arm. A small group of blisters or vesicles develop associated with inflammation, swelling and tenderness that lasts for one to two weeks. About 10 percent of people develop an exaggerated reaction with more marked swelling, redness and tenderness and decreased use of the arm for a few days. Some people develop red streaks going around the arm, which resolve spontaneously, but this reaction is sometimes mistakenly assumed to be a secondary bacterial infection. Headache, fever, and feeling poorly for a few days occur frequently. About one-third of healthy young adults who were vaccinated reported missing at least one day of work, school, or participating in usual activities. More serious reactions occur much less commonly.

The vaccine virus can be transmitted from the vaccination site to some other part of the body or to people who have direct contact with a vaccinated person. The virus is transmitted on hands after touching the vaccine site. There is no evidence that the virus is transmitted through respiratory droplets or that there is any risk from being in the same room as a vaccinated person. If the vaccine virus is put on an area where the skin is broken or on a mucous membrane such as the mouth, eye, vagina, or rectum, then sores develop that are similar to the sore at the vaccination site. This can create serious problems if the viruses are placed in or around the eye or the genital area. The vaccine is not recommended for anybody with acute or chronic skin conditions that could predispose to this problem. People with eczema are at particularly high risk of developing severe reactions. Any person with eczema, atopic dermatitis, or any household member who has these conditions should not be vaccinated.

When the smallpox vaccine was given to pregnant women, the vaccine virus was sometimes transmitted to their unborn babies and caused serious infections and sometimes premature birth. When the vaccine was given to children under a year of age, they had a higher risk of developing encephalitis than older children and adults. The risk in adults is about one to two per million and this complication can lead to long-term brain damage or death.

4. Are there special risks for patients with immune disorders?

Yes, patients with immune deficiency disorders and their household contacts should not be vaccinated. Persons with defects in lymphocyte function, including people with leukemia and other forms of cancer, are at high risk of developing a serious and frequently fatal complication called progressive vaccinia. Although patients with mild defects in the immune system that do not affect lymphocyte function may not be at increased risk, there is no reason for these people to be vaccinated at this time. If there were to be outbreaks of smallpox associated with bioterrorism, these people should check with their doctors before considering smallpox vaccination.

5. I am being treated with prednisone. Should I take the vaccine?

Any person with a condition that requires the use of prednisone or other immunosuppressive agents should not receive the smallpox vaccine at this time. Although low doses of prednisone do not usually cause any problems with live viral vaccines, these persons might require higher doses of prednisone if their underlying condition became more severe. We do not have any data on what doses of prednisone might be safe for people who receive the smallpox vaccine.

6. If I have an autoimmune disease, should members of my family take the vaccine?

If you have an autoimmune disease that might require the use of steroids or other therapy that could affect the immune system, no one in your family who lives in the same household should receive smallpox vaccine because you might acquire the smallpox vaccine virus from your family member.

7. If I have an autoimmune disease, should I stay away from my place of employment if there are people there who have been vaccinated? If so, how long should I stay away?

You do not need to stay away from your place of work where people have received the smallpox vaccine. We do not have the same physical contact with people in the workplace that we have with family members. Vaccinated individuals in the workplace should have their smallpox vaccine site covered with special bandages that will markedly reduce, if not eliminate, the risk of their transmitting the virus to you. If vaccinated people take appropriate precautions with regard to care of the vaccine site, then they can continue to shake hands and have other minimal contact with other persons.

8. Are there any special precautions that I as an autoimmune disease patient should take if there is a national vaccination program?

If your disorder puts you at increased risk, you should take care to minimize direct touching contact with people who may have received the smallpox vaccine and who have an open sore that could contain the virus. If your job requires direct physical contact with people, such as people who do massage therapy, then you might consider asking clients who have been vaccinated not to come for therapy during the time when they have an open sore from the vaccine.

9. If I have an autoimmune disease that affects the skin, should I take the vaccine?

If you have active lesions from psoriasis, cutaneous vasculitis, bullous pemphigoid, Behçet's disease, discoid lupus, Mooren's ulcer, or any other skin disorder, you should not receive the vaccine. If your skin disorder is under control, you do not have any open lesions, and the vaccine is highly recommended for you because of your occupation, then you might consider receiving the vaccine after consultation with your physician. If it is not essential for you to be immunized, then we would advise against it.

10. Is there any way of treating the adverse reactions if they occur?

Some adverse reactions can be treated with a special immune globulin preparation that appears to help patients with eczema vaccinatum, severe inoculation around the eye or other sites, and possibly for progressive vaccinia. There is one antiviral drug that is available for investigational purposes, but it has a high rate of serious side effects. These drugs are available through the Centers for Disease Control and Prevention.

11. Is there a safer vaccine available for patients with autoimmune disease?

A new smallpox vaccine is currently being tested and should become available sometime during 2003. This vaccine is made from the same virus that is in the current smallpox vaccine. The new vaccine will be grown in cell culture rather than on the calf skin. Since the viruses are the same, the new vaccine will probably have the same risk of adverse reactions as the current vaccine. Scientists are working on developing safer vaccines against smallpox, but it will take at least five to ten years before these vaccines might become available.

12. Is the situation likely to change with regard to the risk of exposure to smallpox?

Almost all infectious disease experts recommend against routine vaccination of the civilian population because the risks of exposure to smallpox are very small and probably close to zero. Experts are constantly reevaluating the potential for exposure from bioterrorism. As the United Nations investigations in Iraq continue, we should learn whether or not this country has produced smallpox for possible use as a weapon. If there was one small event in a single location, this may not change the equation with regard to balancing the risks and benefits from this vaccine for the general population. Experts would contact everyone who had been exposed to be sure that they were immunized, but it would not require immunization of the general population. Smallpox vaccine can protect against smallpox even when it's administered up to four days after exposure. If someone has a known exposure to smallpox, then there are very few contraindications to using the vaccine and people with skin disorders and mild immune deficiency disorders would be immunized. If there was a confirmed large outbreak in your local community, then many experts believe that almost everyone in that community should receive the vaccine. We must always weigh the potential benefits of vaccines against the potential risks. At this time smallpox vaccination is not warranted for the general public.

American Autoimmune Related Diseases Association
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