Impact On Your Life

In general, Pemphigoid can be controlled by taking some daily medications. As a result, the lifestyles of those who live with these diseases are largely unchanged. There are, however, cases where Pemphigoid can be very debilitating and cause lost time at work, loss of appetite, loss of sleep, hospitalization, emotional distress, etc. These effects are most often associated with the onset of the disease and during the search for a correct diagnosis. If an early diagnosis is made and treatment initiated, it is very common for the patient to return to a fairly normal lifestyle.

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.
  • 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 option(s) you undergo, you and your dermatologist and other healthcare professionals will need to carefully 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, methotrexate, colchicine or Imuran, your immune system may 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 anyways.

Anti-inflammatory antibiotics (tetracycline, erythromycin, dapsone) are often used in Pemphigoid and many of these can cause nausea or stomach upset.  Sometimes taking these medications with ginger ale or crackers can be helpful.

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.

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