Tag Archives: pemphigus

If you suffer oral lesions, how can you partner with your dental health care provider to come up with a definitive diagnosis? A thorough review of your symptoms is critical. Make sure your dentist or dental hygienist listens carefully and asks detailed questions about your concerns, such as . . .

Recently, the Awareness Campaign was an exhibitor at the American Dental Association’s (ADA) Annual Meeting in Washington, DC from 11/5-11/10 and the Greater New York Dental Meeting (GNYDM) from 11/29-12/2. Campaign staff and volunteers connected with over 600 dental professionals at each meeting, handing out brochures and post cards specifically designed to help these dental professionals recognize P/P symptoms.

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Dealing with insurance is not fun, especially when you’re in pain, and don’t know what the future holds.

My experience has shown, that the first place to start when you have a problem is with your insurance company’s customer service. What I have found, is that when I call customer service, I can get very different answers for the same question depending on who I talk to. So depending on the complexity of your issue, I would encourage you to make more than one call to see if you do get a consensus. We hope that we will, but if information wasn’t understood, or given incorrectly, you are on your own to straighten it out.

When I had my Rituximab treatment, what I actually got from my insurance was  in writing before the treatment. Customer service sent me a document that indicates what charges I could expect.

Labs are another thing to keep an eye on. When seeing several doctors, many of them want their own labs. It’s very easy to get duplicate lab work. Make sure to check your lab records, and what labs your doctor is ordering. For example one complete blood count (CBC) will do. In many cases your doctor will accommodate not duplicating labs, but it is up to you to let them know if you’ve already had recent lab work by another doctor.

Generally it’s pretty easy to get that lab work to the other doctor. I actually had a doctor who  ordered a CBC when I had just had one recently from another doctor in the same clinic. When I brought it to her attention shortly thereafter, she was very accommodating letting billing know so I wouldn’t get charged. She wouldn’t have done this if I hadn’t brought it to her attention.

There are many other areas where being alert and not afraid to ask questions can pay off.

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

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Most individuals have a primary care physician. Many have a dentist. Many women have an OB/GYN for women’s health.  There are a variety of specialists’ that one may have: Internists, Ear/Nose & Throat (ENT), Ophthalmologists, Rheumatologists, and more.

When you are being treated for any form of pemphigus or pemphigoid (P/P) and are on any of the various treatments it is best to keep all of your doctors in the loop.  Each one should know of your present condition and the medications that you are taking as this can affect your diagnosis with each specialty examination.

If you will be considering an invasive surgical procedure of any kind, (including dental work) both your surgeon (and dentist) and your dermatologist need to be in touch.  Usually, your P/P medications can be increased for a few days prior and a few days afterwards to prevent any flare-ups.

Also advise your dental hygienist when you are having your teeth cleaned, so that he/she can be extra gentle with your gums.  (Many Hygienists are just now learning about P/P through the IPPF Awareness Campaign!)

When you are a new patient at a doctor’s office and filling out the information sheet, be sure to list all the medications you are taking for your P/P condition.  Your new doctor will then ask you about them and be aware of your situation.

Remember, when you need us we will be in your corner!

The IPPF strives to do many things for the pemphigus and pemphigoid community, but our three biggest goals are to raise awareness, create a support network, and to increase education. One of the biggest tools that we have at our disposal to accomplish those goals is social media.