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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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Time for the Infusion

As the treatment drew near, I had a lot of questions for Dr. Williams. She felt an oncologist was better equipped to answer them, so she scheduled a consult with one. That was a great move. The oncologist answered all my questions. He said prescribing and administering Rituxamab is an everyday occurrence for the infusion room. He said they give this treatment to leukemia and lymphoma patients who are in very poor health. Since I was in relatively good health, his concerns of complications for me were minimal. That was reassuring.

I had to do a lot of lab tests, which is common for intravenous treatments affecting the immune system. I was tested for several types of hepatitis, HIV, TB, and other infectious ailments. You can see from my “before” picture how bad my skin was.

I was treated using the Rheumatoid Arthritis Protocol (1,000 mg intravenously on days 1 and 15). My first dose was administered on June 17, 2014 and lasted 6 hours; the second on July 1, 2014, lasted 4 hours. I was relieved that other than a little jitteriness caused by a steroid drip, I had absolutely no side effects or reactions. It literally felt like I was getting a routine saline solution infusion.

Jack Sherman 4 Jack Sherman 3

When I went in for my second infusion, there was no change in my disease activity. I didn’t expect to see any changes for at least a month. To my surprise, as you can see by this photograph comparison, I was seeing signs of improvement a week after my second infusion! I was still taking 250 milligrams of azathioprine and 25 milligrams of prednisone every other day.

Jack Sherman 6 Jack Sherman 5

Stay tuned for next week’s conclusion of Jack Sherman’s Road to Rituximab Story…

Part One
Part Three

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Many times when seeing a physician for pemphigus or pemphigoid they are quick to prescribe a systemic treatment that will hopefully help you reach remission. This can be a good thing. However, sometimes the obvious may be overlooked.  For example, if you are in pain,  having trouble eating or swallowing, your clothes are sticking to your lesions, the blisters on your scalp make bathing and showering difficult, or perhaps you are having chronic nosebleeds. These symptoms can be managed with topical treatments, but they are often forgotten. There are different options available for different body locations in many different strengths. Be candid with your doctor and let them know where you are having disease activity and how severe it is. Although, ultimately, the systemic treatment is going to make the difference in the long run.  Topical treatment can help relieve many of your symptoms along the way!

If you’re not sure which medications to ask for or their strengths, just “Ask a Coach”!

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