Tag Archives: disease activity

Pemphigus and pemphigoid (P/P) can take a long time to improve or reach remission. The process can take months or even years. Although it may seem that this disease appeared overnight, in fact, it has taken a long time to present itself, and it will most likely take just as long to resolve. So the question often arises, “How do I know if I am improving?” Improvement can be measured in a couple ways, so here are some tips to measure whether your disease is improving:

1.      Keep a log of disease activity – It’s easier to measure if you can see it on paper.

2.      Amount – Count the number of blisters, their location and write them in your log. If you have less blisters than before then you are improving.

3.      Frequency – Take note of the blisters and how long they take to resolve. If they are clearing up quicker than before then it is showing improvement.

4.      Fatigue – Pemphigus and Pemphigoid cause fatigue. A clinical sign of improvement should be less overall fatigue.

5.      Talk to you Doctor – Ask your doctor what signs they look for that indicate improvement.  Working together with your physician to reach remission should be your biggest priority.

Improvement is a step-by step process and can be slow. If you follow these tips you may just find that you are improving, even if it’s just a little at a time. Knowing that you are improving will help you realize that you are in control and on the road to remission.

Have other questions about measuring improvement? Just “Ask a Coach! Remember, when you need us, we are in your corner!

Studies have shown that there is a mind-body connection.  It is known that stress can cause headaches, muscle aches, tummy aches, and blisters!   For those affected by pemphigus and pemphigoid (P/P), when your stress levels are high, the antibodies know when it is time to come out and play.  Horrors!  It is easier said than done to remain calm and stress-free.

Have you experienced when you have a headache and you worry more about something and the headache gets worse?  That is an example of the mind-body connection.

The brain signals the immune system, and we never know until after it happens.  In order to ward off these signals, it is important for patients to remain even-minded.  HA!  You say!  You’re right!  However, there are ways for us to get better at this.  It just takes practice.

Meditation can be very helpful.  Even if only for 5 minutes at a time.  Never feel that you must sit in a lotus position and keep stiff for an hour!  That is not what meditation is about!

There are a lot of meditation videos on YouTube that you could take a look at.  Just type in the word “Meditation” and a lot of suggestions come up!

Breathing exercises are a great way to help keep your blood pressure down. They help to bring a sense of calmness to envelope you.  Essentially, you are inhaling slowly to a count of 10 or 20 and holding the breath for 10 or 20 and then exhaling slowly for 10 or 20.  When you exhale, think of a happy word (like an affirmation) ie: joy or peace.