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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

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Season’s Greetings! It’s that time of the year again and here at the office we are getting ready for 2014. But we still have another month to go, and that means finishing up 2013 with a bang!

Kate Frantz is settling in and getting the Awareness Campaign up and running; Monique Rivera has been busy processing donations and keeping the information flowing; Kevin Cruz has been working on patient and caregiver handbooks; Isaac Silva has been doing some web site work while learning more about the IPPF; Marc Yale and the Peer Health Coaches have been helping patients at an astonishing rate; and the Board of Directors and our Medical Advisory Board continue to be instrumental in shaping our future.

2013 Holiday Fundraiser. This fundraising season is shorter than usual with Thanksgiving falling where it did, but so far this has been one of our best efforts in recent years. Along with first-time supporters like Rana, Hartmut, Chris, Patricia, and Bob it has been great to see the names of long-time supporters like Lillie, Joan, Alice, Yvette, Carol, Ellen, Jay, Sonia, Ed, Therese, and dozens of others who continue to support our important work. If you have not donated there is still time. And make sure to date your check accordingly so you get your 2013 tax-deduction!

Awareness and Education. If you missed the August buzz on Facebook, Rebecca Oling and MAB member Dr. Animesh Sinha were guests on Good Morning New Haven (Connecticut) talking about pemphigus, pemphigoid, and the IPPF. She followed that up with a trip to Houston, Texas, to participate in a 4-hour long video shoot for IPPF that will be added to the Giving Library (www.givinglibrary.com). Add to that scouting the globe for patient educators, helping people on Facebook, traveling to sit with patients and their families, working full time, and being “Mom, wife, daughter, and sister” and you can see why Rebecca is my hero!

What do you get someone turning 20? How about a party in Chicago! The IPPF celebrates its 20th Anniversary in 2014 and we are planning an evening of food, friends, and fun at the 2014 Patient Conference. On Saturday evening (April 26, 2014) join us for dinner, our Annual Awards, and an Anniversary tribute followed by a Casino Night fundraising event. More information will be available soon! Proceeds go directly to our Patient Support programs. If you’re in Chicago, I hope to see you there!

2014 is now a couple minutes closer than it was before you read this letter. With Autoimmune Disease Awareness Month, Rare Disease Day, Pemphigus & Pemphigoid Education and Awareness Month (New Jersey…come on NJ SJR77!), 17th Annual Patient Conference, and more on the horizon – we need your help! If you’re interested in spreading the word and mission of the IPPF, call or email me and let’s do this together!

Thank you, Happy Holidays, and from my family to yours – Happy New Year!