I had a dental appointment later that week. I told the dentist that I was going to see a primary care doctor, because I couldn’t get in to see a dermatologist. He strongly suggested that I see a dermatologist rather than a primary care doctor. Later I found out that he highly suspected I had pemphigus. I had disease activity on my nose, my gums, scalp, and forehead. The lesions on my nose were the worst.
Most dermatologists have busy schedules with appointment slots open 4-6 weeks from when you need one. Dr. Bernard Goffe in Seattle was my families’ long-time dermatologist, and his next available appointment was weeks out. Sometimes, you have to be assertive to be seen right away. My mom was the perfect person to do this for me. She called his office and managed to get me an appointment right away. Dr. Goffe did a biopsy that day, sent me home with a fist full of antibiotics, and sternly told me “don’t go on the Internet!” I knew he was serious, so I decided to stay away from the internet. That was a good choice, as it most often shows the worst cases.
Dr. Goffe called that same week. The diagnosis was pemphigus vulgaris. I didn’t know it at the time, how fortunate I was to have a doctor familiar enough with pemphigus to give a correct diagnosis. Unfortunately, for many patients it takes months and seeing several doctors before getting a correct diagnosis.
I wasn’t worried about my diagnoses because I didn’t even know what pemphigus was! I was very relieved it wasn’t cancer.
Dr. Goffe told me I would have to take some medications that have side effects. I remember thinking, “How bad can it be if the medications are going to help me get better?”
I started out on 120 milligrams of prednisone with some additional prescriptions: Ambien® (zolpidem) to help me sleep, and Prilosec® (omeprazole) to help with digestion and to prevent ulcers.! I remember at the time, thinking that it was the first time I’ve ever had to take pills for my pills!
As the years passed, my pemphigus has been under control with no major breakouts, but I have never been lesion free. My disease activity would wax and wane. I was taking 200 milligrams of Imuran® (azathioprine), and moderate doses of prednisone, and I have never been completely off either medications. From time to time, if I had a persistent lesion, I would get a very painful steroid injection under it. It became obvious to me that I needed to put my fears aside and seek a new treatment.
What Finally Brought Me to Rituximab
For many years I felt my lesions were manageable. My doctor told me CellCept® (mycophenolate mofetil) or Rituxan® (rituximab) may — or may not — improve my condition. I could even get worse. There was no way to know for sure without trying one of them. I did not want to rock the boat unless I had to, so I decided to continue with my current treatment. This went on for a few more years. My doctor and I would discuss changing my treatment from time to time, but I always decided to keep it as it was.
In 2010, I met Marc Yale, a Certified Peer Health Coach with the IPPF. This relationship evolved over time and Marc eventually asked me if I would like to be a Peer Health Coach (PHC). I thought this would be a great opportunity. I could talk to other patients and help them, learn more about the diseases, and support the Foundation at the same time. I gladly accepted his invitation. The timing was perfect because I was confident my pemphigus was under control.
Over the years, I have had the opportunity to talk to hundreds of people affected by pemphigus and pemphigoid. Like many, I had never talked to, or met, anyone who had the diseases, let alone heard of them.
As a PHC I have attended several IPPF Patient Conferences. My first one in Detroit was an eye opener. I was around a room full of people with the same condition I had! It was a pretty powerful motivator for me to see many of them doing well!
Dr. Grant Anhalt, a dermatologist from John Hopkins University, gave a session at the conference on rituximab. I came home very excited and thought this is what I should do.
As time wore on, I began to think my disease activity was fine and I shouldn’t change my treatment. Whenever Rituximab was discussed with me it was for patients with very serious disease activity. I was not in serious condition, so I thought I shouldn’t pursue it.
Another year passed, and in 2012 I found myself in Boston, MA at another IPPF Patient Conference. Dr. Razzaque Ahmed, head dermatologist at Boston’s Blistering Disease Center, presented on IVIg (Intravenous immunoglobulin) therapy. History repeated itself for me: I got very excited about another treatment, but after I returned home, I decided not to pursue it.
That same year, I was assisting with an IPPF conference call featuring Dr. Ahmed. I asked him about my use of prednisone. I already knew that the long-term use of high doses of prednisone was very harmful. What I wanted to know was if a low dose over a long period was also harmful. I sensed over the phone he was surprised and concerned. He asked me, “How long have you been on prednisone?” “Ten years” I responded. He told me it was his opinion I should get off of prednisone as soon as possible; and ten years was far too long. This was a turning point for me.
I wasn’t sure how my body would handle the side effects of long-term prednisone use as I aged. No one can say for sure what my future would look like if I stayed on that course of treatment. Nor could anyone tell me definitively what the outcome and long-term risks of being treated with rituximab would be. It got to the point where the risk of trying Rituximab outweighed the risk of staying on prednisone.
My goal was to get off of prednisone, even if it meant I had to endure some disease activity. If it put me in complete remission, that would be even better!
I had changed dermatologists and was now seeing Dr. Clive Liu. Dr. Liu in Bellevue, WA. He provided great care, and was a joy to be around. He kept treating me even after my COBRA insurance expired. Dr. Liu and I discussed the conversation I had with Dr. Ahmed. We both agreed it was time to go to the next level. I had medical insurance, but Dr. Liu’s practice did not accept it. He said it was important to find an “in network” doctor while trying to get approved for Rituximab.
As a PHC, we recommend patients find a doctor who has experience treating pemphigus and pemphigoid, or who are willing to consult with someone who has. Dr. Lisa Williams in Seattle, WA, hadn’t treated very many pemphigus patients, but she was very enthusiastic and wanted to provide me with the best possible outcome. Her enthusiasm was what I needed. I called Marc Yale to tell him how excited I was about my new doctor.
She had never prescribed rituximab before, but was committed to helping me get off of prednisone. Immediately she invited me to her dermatology study group where I was one of several patients looked at by 25 dermatologists. We would email each other regularly, and she was always available to look at any studies I shared with her. I even had Marc sit in on one of my calls with her to discuss treatment options. Not only was she fine with this, but she welcomed it.
In the beginning, Dr. Williams was a little uneasy about using rituximab. Her biggest concern was once a patient receives the infusion, they’re in it for the duration. If it was a pill, the dose could be adjusted as needed.
Another year went by and I was tired of dealing with symptoms. After much discussion with Dr. Williams, and a lot of reflective thought, we decided it was time to move ahead with rituximab.. Marc helped me realize something I will never forget: I deserved to be symptom free.