Impact on Your Life

Pemphigus does have an impact on the quality of your life – the degree to which depends upon what your life is like and how severe your disease is or becomes.

As many of us know, a diagnosis of pemphigus can be very upsetting. One day you feel perfectly healthy, the next day you learn you have a chronic, life-threatening illness. In general, once pemphigus is under control, you should be able to return to your normal lifestyle. You may notice there are times when you feel wonderful, and other times when you feel discouraged, in pain, or depressed. There are cases where pemphigus can be very debilitating, and cause lost time at work, loss of appetite, loss of sleep, hospitalization, emotional distress, etc. Fortunately, this usually only occurs with the onset of the disease, during the search for a correct diagnosis and proper treatment. Once the disease is diagnosed and effective treatment is initiated, you will find your life returning to normal.

Much of the impact on lifestyle comes as a result of side effects caused by prednisone. For example,

  • Many people experience emotional difficulties and mood changes. If these are continual and severe, other medications are often used to help mitigate these side effects.
  • Another commonly reported side effect of prednisone is weight gain. A high protein, low carbohydrate, low fat diet, as well as a regular exercise program is recommended.
  • Osteoporosis, glaucoma, and cataracts are also known side effects of prednisone, and regular checkups with your health care provider will enable you to effectively counter these side effects with appropriate therapies and attention.
  • Heartburn (reflux) often occurs with high-doses of prednisone and there are medications that your health care practitioner can prescribe to reduce this problem.
  • Type 2 Diabetes (steroid-induced diabetes) is a common side effect of prednisone and creates a need for a modified diet. Generally, this type of diabetes will diminish as the dosage of prednisone is reduced and may even go away when prednisone is stopped.

Depending on what treatment(s) you undergo, you and your dermatologist and other healthcare professionals will need to monitor your condition and general health.  You will be required to get regular blood tests or other tests such as bone density tests, glaucoma tests, etc.

When taking immunosuppressants such as Cellcept and Imuran, your immune system will become suppressed.  As a result, you will have to be careful to avoid any unnecessary exposure to possible infections.  You will need to pay attention to taking care of yourself including reducing stress, getting sufficient rest, maintaining a nutritious diet, etc.  On a positive note, these are the things we should be doing for ourselves anyway.

Finally, depending on where your lesions appear, you may also have to become well–versed on the proper care of your lesions.  Wound dressing and care takes time but with a little practice, knowledge and the right materials, you will quickly learn how to manage this effectively for yourself.

Many patients find that they need to alter their diets to not only help address some of the side effects from their medications but also to learn what, if any, foods trigger flares.  Keeping a food/diet diary might be helpful here.  Foods that have been reported to trigger or exacerbate flares in some people include: garlic, onions, leeks, chives and mangos.

Again, the changes to your life at least initially will seem daunting but as you work through this disease, eventually life returns to normal or at least a “new” normal that you can live with.