Tag Archives: treatment

It’s no secret among the pemphigus and pemphigoid (P/P) community that treatments to help these rare diseases are not always ideal. It’s also common for patients and caregivers to reach out to the IPPF seeking advice on holistic/natural/eastern medicines to treat P/P before the typically used western medicines recommended by physicians.

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In a previous Coaches Corner I have given prednisone tips. It is a good time now for an update as there are new patients who are diagnosed and who are leery of the side effects that can come from taking a steroid treatment.

No one chooses to take prednisone as a medication.  However, it is used frequently for a variety of medical conditions, like pemphigus and pemphigoid (P/P). Prednisone is often used as the first line of defense against P/P. It works rather quickly and is effective in diminishing disease activity.

To learn more about prednisone, how it is used, what precautions to take before taking it, dietary suggestions, and side effects please go to this link from the U.S. Library of Medicine: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a601102.html

A few of the side effects from taking prednisone can be:

Headache, dizziness, difficulty, falling asleep or staying asleep, extreme changes in mood, changes in the way fat is spread around the body, extreme tiredness, weak muscles, and more.

Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:

vision problems, eye pain, redness, or tearing, sore throat, fever, chills, cough, or other signs of infection, depression, upset stomach, lightheadedness, shortness of breath(especially during the night), swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs, difficulty breathing or swallowing.

Please note that not everyone experiences every side effect and that even taking treatments like aspirin can come with side effects.  Everyone has his or her own unique physiological makeup. Therefore, while experiences with prednisone may be similar, they are not exactly alike.

Remember, when you need us we are in your corner!

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When you decide to take a trip outside of the state where you live it is a wise idea to make sure that you have enough medications with you to last the length of your trip.

Important information to keep on you while traveling: a medical identification card and insurance card. It is important to have a medical identification card on you to show all pertinent information regarding your condition and all other conditions that you may have. You can purchase blank medical information cards at your local drug store, and fill them out with your medical information (Example Medical Information Card). It is important that you list all of the medication that you are taking to treat your pemphigus, pemphigoid, or any other illnesses to let medical professionals know, so that they don’t put you on any treatments that could counteract what you are currently taking.

If you have a smartphone (iPhone, Android, etc.) that has a health app (example: iPhone Health App) I suggest you fill it out. You can list medical conditions, allergies, medications (name of drug and dosage), doctor(s), emergency contacts, organ donor status, weight, height, and more! Having this information filled out can be very helpful to you at all times, but can be especially helpful during traveling if anything were to happen.

I also suggest that if you are traveling within the U.S. that you keep the IPPF referral list with you. If you are in another state and experience a flare you may need to see a doctor that knows how to treat pemphigus & pemphigoid.  By having the list with you, you can find a potential doctor to help treat you.

Remember, if you have questions to “Ask a Coach” because when you need us we are in your corner!

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Having a flare after being in remission can be a scary and frustrating experience. Thoughts run through your head about your previous experiences and you may wonder if your disease will be as bad as it was before. When you have the flare, it is important to recognize it and take the challenge head-on. It’s easy to become stressed from the uncertainty and lack of control, but remember that stressing will only make things worse. Here are some tips to reduce the intensity and time that you may have the flare.

1.      Schedule an appointment with your doctor immediately.

2.      Have your doctor give you a clinical diagnosis or get a biopsy done to confirm the flare. There are many differential diagnoses for your disease so you want to be sure it is what you suspect.

3.      Discuss with your doctor a treatment strategy and begin right away.

4.      Track your disease activity in a log, this will help you determine if you condition is improving.

5.      Follow up with your doctor regularly and advocate for yourself. Seeing your doctor every 4-6 weeks is recommended. If you have an aggressive flare you may need to see your doctor more frequently.

6.      If you need support, contact the IPPF and talk with a Peer Health Coach. Coaches are available to answer questions and help you decide how to best handle your flare.

It is common for flares not to be as intense as your first experience with the disease, but all patients have different experiences. The important thing is to be proactive and stabilize the disease activity as soon as possible. Flares are part of living with pemphigus and pemphigoid but if they are handled quickly and with a positive attitude you can eliminate them sooner.

Remember, if you have questions to “Ask a Coach” because when you need us we are in your corner!