Tag Archives: treatment

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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!

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Results So Far

I had a follow-up appointment with Dr. Williams on July 17, 2014, one month after my first infusion and two weeks after the second. She looked at me and I swear her jaw dropped. She was amazed by how well I had responded. That was a fun appointment!

Jack Sherman 7

She had consulted Dr. Anhalt shortly before my treatment. Dr. Anhalt suggested going off of azathioprine a month after my second infusion (August 1), and to start a slow prednisone taper. I asked Dr. Williams if I should stop taking azathioprine now, two weeks before we were planning. We agreed I should stop taking it. One drug down!

Since then I haven’t taken azathioprine. Better yet, I’ve been on a continual prednisone taper. I started on 25 milligrams every other day. A week later, on July 23, 2014 (three weeks after my second infusion) I took these pictures. I was completely lesion free! I was ecstatic to say the least. This far exceeded my wildest dreams!

In January 2014 I am down to 2 milligrams of prednisone, every other day! This is the lowest dosage of prednisone I have ever been on. The best news is my skin is completely void of lesions. Sure I’ve had one or two minor ones, but nothing that doesn’t clear up quickly. Pretty amazing considering where I started.

I’m not claiming remission — yet! While it’s easy to be confident about my recovery, I prefer to say I’m very optimistic about my future living with pemphigus. What I have learned over the years about this disease is things can change pretty quickly. I could end up in total remission, or I could end up needing another round of Rituximab. Either way, I believe I will be better off than had I not opted for rituximab. For that I’m very grateful!

 Continued Support and Education

Each individual is just that, an individual. These diseases aren’t like more common diseases, like Type II Diabetes. If you go to 10 doctors after a diabetes diagnoses you will probably hear the same thing and expect the same results. With pemphigus and pemphigoid being rare, ultra orphan autoimmune diseases, your results and advice will likely vary.

Even though I’m a Peer Health Coach, Marc Yale has continued to be my coach. I can’t thank him enough for his time, knowledge and support he’s given me over the years. My goal is to help patients like Marc has helped me, and share this knowledge with them each and every day. Reach out to the IPPF and use its wealth of knowledge and patient resources. If you can attend the IPPF Patient Conference, I encourage you – I implore you – to go. The information and fellowship really does make a difference!

In the end, my biggest piece of advice to you is to be proactive in you care and treatment. Work with your physicians and create a team committed to your success. Share what you learn from your coach, attending a conference, or from a conference call with your doctor. Ask them to contact the IPPF who will connect them with a P/P expert. Whatever you do, it’s your health and quality of life at stake, so make informed, educated decisions. I did and couldn’t be happier!

Good luck, and good health to you all!

Part One
Part Two