Every day, our patient services team hears stories from our community about what it’s like to live with pemphigus and pemphigoid. From getting diagnosed to finding the right doctor to thriving post-treatment, many patients express similar frustrations. And yet, there’s a common hope that runs through many of the stories we hear at the IPPF.
Each week through August and September, we’re featuring a story that highlights a specific part of the patient journey. OUR HOPE is that by sharing stories from our community, more patients and caregivers will realize they are not alone.
Our second story in the Patient Journey Series comes from Rudy Soto:
My journey with pemphigus foliaceus (PF) began in 2009; however, my symptoms began in 2008. I have been in remission since 2016. It has been a long journey, and I have encountered many bumps and detours along the way. I would not have reached remission without the support from my wife, Jennifer, of 26 years, my family and friends, and the IPPF.
When I was diagnosed, I asked many questions and felt alone. Why me? Is it contagious? Is it fatal? I felt deeply depressed and didn’t want to socialize with others in order to avoid the questions, stares, and worries about what people were saying about me. Unfortunately, I missed many of my daughter’s high school soccer games because of this.
Two years after I was diagnosed and on oral medication, my wife found the IPPF online. She noticed that there was a conference in San Francisco and wanted to attend. I was hesitant due to the lesions on my face. I didn’t want to be around strangers, but she convinced me to go. It turned out to be a great experience, and I discovered that I was not alone. There were other patients that shared the same feelings. Some had already reached remission, and some were looking for more information like me.
While I was at the conference, I met a man from Hawaii who also was diagnosed with PF. We talked for hours, and I still keep in touch with him. When the conference ended, I was grateful that my wife encouraged me to go. I have now attended five patient education conferences, and I learn something new each year. After San Francisco, I realized I needed to control my disease and not allow my disease to control my life. “Can’t grind me down” became my personal motto. I try to do everything that I used to do before being diagnosed with PF, though I am careful.
The IPPF has made a huge impact on my life. Staff members have provided me with information, and I was able to connect with a peer health coach (PHC). My PHC became a special person that I was able to count on. She offered words of encouragement and let me know I was not alone—she would be with me on my journey to reach remission. It was because of this experience that I decided to help others in the same way. I wanted to share my story, offer helpful ideas and encouragement, and make an impact on someone’s life.
I reached out to the IPPF about becoming a support group leader in order to help others. This has made an impact on my community and raised awareness. And when I reached remission, that didn’t mean my work with the IPPF had finished. It meant I needed to work harder to continue raising awareness about pemphigus and pemphigoid. You are not alone. Continue to fight the fight and control the disease. Do not let the disease control you.
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Principia Biopharma Inc, a clinical-stage biopharmaceutical company dedicated to bringing transformative oral therapies to patients with significant unmet medical needs in immunology and oncology, today announced positive top-line data from the completed open-label Phase 2 trial of PRN1008 in patients with pemphigus (including both pemphigus vulgaris (PV) and pemphigus foliaceus (PF)) and the initiation of a Phase 3 trial of PRN1008 in pemphigus. The primary efficacy endpoint of the Phase 2 trial – Control of Disease Activity (CDA) within four weeks – was achieved by more than 50% of patients and PRN1008 was generally well tolerated. Based on the results of the Phase 2 trial, Principia has initiated the PEGASUS study, a global, randomized, double-blind, placebo-controlled, pivotal, Phase 3 clinical trial of PRN1008 in patients with moderate to severe pemphigus.
“Pemphigus is a debilitating disease with high unmet need. We are encouraged by the efficacy and safety results from the Phase 2 trial and are initiating the Phase 3 trial based on these results. This is a key milestone for Principia, and the next step toward bringing this novel oral therapy to patients in need,” said Martin Babler, Chief Executive Officer of Principia.
“PRN1008 has the potential to effectively treat patients’ disease and significantly reduce dependence on harmful corticosteroid (CS) doses, which have been the mainstay of treatment in this disease, and may usher in a new era of steroid-sparing, oral therapy for patients suffering from the disease,” stated Dr. Dedee Murrell, Professor and Head of the Department of Dermatology at The St. George Hospital Clinical School, University of New South Wales in Sydney, Australia and the lead principal investigator.
The full data from the Phase 2 trial will be submitted for presentation at a future scientific conference.
Syntimmune recently announced positive preliminary results from its phase 1b proof-of-concept trial of SYNT001 in pemphigus vulgaris and foliaceus patients. It’s exciting for the IPPF to share good news related to research and treatments. The full press release from Syntimmune can be found here. The following is an excerpt:
Syntimmune, Inc., a clinical-stage biotechnology company developing antibody therapeutics targeting FcRn, today announced positive preliminary results from its Phase 1b proof-of-concept trial of SYNT001 in patients with pemphigus vulgaris and pemphigus foliaceus. The data showed clinically meaningful benefit of SYNT001, with a favorable safety and tolerability profile similar to that observed in the Phase 1a study.
“There remains a clear unmet need for a safe and fast-acting treatment for patients with pemphigus, who face serious symptoms and complications associated with their disease,” said Donna Culton, M.D., Ph.D., an assistant professor at the University of North Carolina School of Medicine. Culton presented preliminary results of the Phase 1b study at the International Investigative Dermatology conference being held on May 16-19, 2018 in Orlando, FL. “These preliminary data demonstrate safety as well as a rapid reduction in PDAI scores and lowering of IgG levels with treatment of SYNT001, which support further studies of this drug as a potential new therapeutic option,” Culton said.
My name is Rudy Soto. I am from the great state of Texas and have lived there all of my life. I am married to a wonderful woman, Jennifer, who is my greatest supporter. We have four awesome children—two girls and two boys who range in age from 5 to 23. My motto is Can’t Grind Me Down, which I took on after I achieved remission in November of 2016. To me, it means that no matter how long my journey has been, this disease is not going to beat me. I am going to continue to live my life to the fullest and enjoy myself, my family, and my friends. This disease will not control me. I will control this disease.
My journey with pemphigus began almost eight years ago, and it has been a long one. One summer, as we were set to go on a cruise, I noticed a small lesion on my chest. I did not pay much attention to it, but I applied an antibiotic cream so as not to get infected. My wife and I went on our cruise, and I never thought twice about the lesion. After returning home, I noticed the lesion was still there and that I also was starting to get a few on my scalp. This got my attention because it was painful to get a haircut. I went to my family doctor who said it was a type of virus and prescribed a topical cream. I applied the cream daily as prescribed, but to no avail. After three weeks, I went back to my doctor. He said it was a staph infection and prescribed a steroid cream. All the while, I noticed blisters appearing on my arms and torso. I continued to apply the cream for a month or two. Still no improvement, and it was getting worse. I went back to my family doctor, and he prescribed a more potent steroid cream. After another two months, he finally said I needed to see a dermatologist. This was almost a year after I first noticed symptoms.
Can’t Grind Me Down: To me, it means that no matter how long my journey has been, this disease is not going to beat me. I am going to continue to live my life to the fullest and enjoy myself, my family, and my friends. This disease will not control me. I will control this disease.
The dermatologist ordered a biopsy and prescribed a topical steroid ointment. He said the results would take a few days to come back from the lab and that he would contact me. After four days, he said I needed to see him right away. Well, that brought fear and stress because the questions began: Is it cancer? What will I do? Is it treatable?
When we met, he said it was pemphigus vulgaris (PV). I asked him what that was and how I got it. He explained that it was not contagious, that it was an autoimmune disease, and it was treatable. He went into great detail, and we discussed the treatment options. We started with a high dose of prednisone—80mg per day—and also started methotrexate. I began using a series of different ointments, shampoos, soaps, and lotions to see what would help the healing.
The prednisone helped, but as we tapered down weekly, the lesions/blisters began to reappear. I also noticed new ones. With the new lesions came questions from family and friends because the disease activity had now appeared on my face. As I continued high doses of prednisone, I noticed that my moods changed. I became irritable, felt more stressed, even depressed at times. I began to shut myself off from everybody.
I also began to gain weight. At the beginning I weighed 165 pounds, but gained almost 40 pounds while on prednisone. My family also noticed the mood swings and the changes in my appearance. My dermatologist had warned me about the side effects of prednisone, but I didn’t believe him. I was wrong. Along with all of the side effects, I had weekly blood work to be sure my liver was functioning correctly.
Every few weeks, we would taper the prednisone. When I reached 30-40 mg, I had a flare up. We tried different types of oral medication—Imuran, dapsone, and methotrexate, to name a few. We would increase and decrease doses of prednisone to find a comfort zone, but that did not work. I stayed on this roller coaster ride for about four years. Different medications, ointments, lotions, etc. You name it, I’ve tried it.
The main concern for my dermatologist was that he wanted to beat this PV, or what he thought was PV, with oral medications. We finally began to discuss other options, including Rituxan infusion. I remember that visit clearly because we talked about the side effects. I asked him what the probability was for me to get one or multiple side effects from this treatment. He gave me a number that I do not remember, but I told him I needed to discuss it with my wife.
When I finally did find the IPPF, the amount of support, encouragement, and care I received was unbelievable.
I wasn’t the only one going through this. My family was confused, too. They asked questions, looked it up on the computer, and did their own research. My wife was a rock, telling me, “You will beat this, and you will get better.” She reassured me there was hope. We discussed the option of Rituxan, and at my next appointment, I asked questions: How would it be administered? Who would administer it? Is it chemotherapy? Would I lose my hair or get nauseous? My dermatologist answered all of my questions and more. He said he wanted me to see a specialist in Dallas who dealt more with pemphigus patients and get his opinion on treatment.
My wife and I drove three hours north to Dallas to see the specialist. We entered the exam room and answered the assistant’s questions. The assistant left the room and returned with the doctor, who looked at the lesions on my scalp, face, and torso and said, “You have pemphigus foliaceus.” I asked him what that was, and he explained to me in detail the difference between the two.
He asked if I would mind if he brought in some students. I said, “Sure, I don’t mind if it’s going to help others.” He stepped out of the room and brought back a team of at least six students! The doctor explained my symptoms and showed them the blisters and lesions. They all took notes. The doctor asked if he could take pictures, and I agreed. I was impressed—I actually had a team working on my case. We discussed Rituxan and treatment, and we made an appointment to for the infusion.
The day of my first infusion, my wife and I woke up early. I packed a bag with some reading material, snacks, and headphones. The oncologist said it would take eight hours to fully administer the treatment, and it would be done slowly to monitor for side effects. My wife stayed with me for a couple of hours and watched me sleep. I was exhausted after the treatment, but I still made the mistake of going to work the next day. I had a second treatment two weeks later, and it also lasted eight hours. This time, I did not go to work the next day.
I did not see any immediate results after my first two treatments. It took about two months after my second treatment to notice a change. My prednisone dosage was tapered again. This time, there was no flare. We tapered 5mg every two weeks until I reached 10mg per day, then we tapered 1mg every week until I reached 5mg per day. I was given a Rituxan treatment every 6 months for almost 3 years until I reached remission.
I have rambled on about my long journey through this ordeal. My experience has been been similar to many pemphigus patients, though we did not have the support many find after receiving a diagnosis. You see, my wife and I did not know about the IPPF and their support until two or three years after being diagnosed. When I finally did find the IPPF, the amount of support, encouragement, and care I received was unbelievable.
This is why I am so interested in helping others with this disease: so no one feels like they have to go through this journey alone. They are not alone. There is an entire family at the IPPF that will go through every step of this journey with them. Good, bad, ups, or downs, the IPPF staff and community is there.
When I was asked to join the team as a Peer Health Coach, I could not say no. It is an honor and a privilege to be working alongside Marc, Becky, Mei Ling, Jack, and all of the other staff members that make this foundation what it is. It means so much to me to be able to offer help to patients who may only speak Spanish. Knowing that there is someone to talk to who can relate to what their experiences is always a spirit-booster.
While you are seeing a qualified dermatologist who is treating you for your Pemphigus Vulgaris, Bullous Pemphigoid, Pemphigus Foliaceus, Mucous Membrane Pemphigoid, etc. you might also be seeing your own dentist, OB/GYN, internist, ophthalmologist or ear/nose/throat specialist.
Please be sure that all of your doctors are aware of your condition and that they have access to your dermatologist. It is important that they know the medications and dosage that you are taking for each medication.
All of your doctors need to be able to communicate with one another if necessary. Being left in the dark will leave you at a disadvantage. Also, if you are going to be scheduled for any major dental work, advise your dermatologist. Depending on the procedure, your medications may be adjusted for a few days prior and a few days following to prevent any flare-ups.