Tag Archives: pemphigus

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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!

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In February of 1995 I noticed some eruptions on my chest which I ignored. The week after I notice them, I went to a week-long school for the Air National Guard in Virginia. While at the school, the eruptions increased on my chest, as well as in my nose, mouth, and face. I was extremely frightened; I did not know what was happening to me. I thought of going to “Sick Call” but decided not to, since the school was only for one week and I wanted to finish it. When I flew home from attending the school, my family took a look at me and begged me to go to an Emergency Room immediately. Since I was very tired from the trip, I waited until the next day.

The next day I went to the Emergency Room of one of the local hospitals. The physician in the ER admitted that he really did not know what was wrong with me. My wife suggested that he call a dermatologist at a bigger hospital which he did. The dermatologist made an appointment for me for the following Monday.

On that Monday I went to the dermatologist who diagnosed me with a disease that I never had heard of–pemphigus. He told me it was a very serious disease, one that was rare and very expensive to treat. I did not know where to turn. I did not know of anyone who had this disease or of any organization who dealt with this malady. He prescribed a mild dose of steroids and sent me home. The eruptions on my skin (which I learned were called “lesions”) increased. Despite many visits to the dermatologist and increases in the medication, the condition worsened. The dermatologist that I was going to suggested that I go to either New York City or Boston for treatment since the doctors in those cities had more experience in treating this strange disease. I opted for New York City.

After visiting a dermatologist in New York City, I was admitted to New York University Medical Center for treatment in April of 1995. The dermatologist in New York City was very aggressive in treating my disease with high doses of steroids, along with other medications and blood treatments. After a week of the aggressive treatment, the spreading of my pemphigus condition stopped. After three weeks I was sent home to recover.

Slowly I was weaned off of my medications in order to determine what my “maintenance level” was. By May of 1996 I was completely off all medications and have not seen a reocrurrence of pemphigus.