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Our final story in our Patient Journey Series comes from Linda:

My journey began in August, 2017. I had a slight rash on my lower back that was extremely itchy. When I went to see my primary care doctor for my annual physical, I mentioned the rash, but he never looked at it. He just brushed it off.

One month later, I spent a week on Cape Cod with my husband, Gary, and family. We walked on the beach and enjoyed the sun, as it was unusually warm and sunny for so late in the season. By the time we got home from vacation, the tops of my arms had a slight rash and were extremely itchy. I didn’t have time to see a doctor because five days later I traveled to sunny Florida with friends, so I bought topical creams and enjoyed the sun and beach once again. 

The Florida weather was perfect, and I spent several hours sitting at the edge of the water enjoying the sand and the cool water running over my legs. It was heaven . . . up until the evening when my legs broke out in a more severe rash that itched all night. I couldn’t handle how itchy my skin was, and the rash had spread. The topical cream wasn’t enough, so I bought Benadryl to help me sleep. I spent the rest of the vacation miserable with the rash and itchiness. I called my primary care doctor as soon as I got home to Connecticut.

The Advanced Practice Registered Nurse (APRN) was baffled when I went in for my appointment. I went through the routine questions about whether I had changed soap, detergent, diet, or medications. She brought another nurse in to consult, and I was asked if I traveled out of the country or whether it could be related to bedbugs. I was given prednisone and sent on my way. They told me if I wasn’t better after finishing the prescription they would refer me to a dermatologist.

While I was on 20mg of prednisone, the rash and itchiness did seem a little better. When I decreased the dosage, they got worse again. I asked for a referral to see a dermatologist and to increase my prednisone dosage back to 20mg; however, my dosage wasn’t increased and the rash and itchiness got worse once again. It was now the end of October and the dermatologist couldn’t see me for three weeks. I was getting worse every day. I couldn’t do anything because of how physically uncomfortable I was. I also felt mentally exhausted and confused about what was happening to me and why.

Finally, I saw the APRN at the dermatologist office. She thought it was something systemic and gave me cream and some antibiotics and told me to return after two weeks. In those two weeks my feet and hands were on fire—red, swollen, and severely itchy. When I returned, they changed my antibiotics, gave me clobetosol salve for my feet and hands, and said, “I think you’re allergic to black plastic.” What?!

I was tested for contact allergies, but all that showed up was a slight allergy to nickel. At this point, I had been taking antibiotics for over a month and everything seemed to be getting better. I stayed on them and I had no rash or itching through March of 2018. I was exercising, taking natural supplements, and following a diet of protein shakes for two meals and a healthy third meal. I had lost 30 pounds.

I stopped taking all medications at the beginning of March. A few weeks later, the itchiness came back, but I couldn’t get in to see the dermatologist right away. When I finally had my appointment, the APRN checked me out and said once again, “I swear you’re allergic to black plastic.” I got rid of my purse and black flip flops, and I was given another prescription for the clobetosol. They told me if I wasn’t better in five days I could come back for a steroid shot. 

After the appointment I was on vacation when the palms of my hands and soles of my feet were hot and itchy. I spent the week with an ice bucket close by to put my feet in and a frozen water bottle to help my hands. My husband and I discussed how none of my doctors had ordered any blood tests. I found out there was a new APRN (an internist) at my primary care doctor’s office, so I made an appointment with her. I also decided at this point to change my diet again. I have suffered from eczema since I was a child, so I looked into the eczema skin diet. I started eliminating things like sugar, caffeine, gluten, histamines, MSG, and dairy. 

I was hopeful at my next appointment, and my husband came with me to make sure that something was finally done to help with my symptoms. After one look at my hands, the internist said, “It all points to an autoimmune disease. Let’s run a complete work up and see what we can find. If nothing comes up, then we will do a skin biopsy.” Finally!

Bullous pemphigoid? What the heck is that?

The blood work results didn’t show anything definitive, but it did show the possibility of an autoimmune disease, so the internist suggested an immunofluorescence test. I asked about conducting a biopsy after it seemed like they weren’t going to follow up with one. The weekend before the biopsy was scheduled, I had strange blisters on my wrists, thighs, and stomach. Although it was sunny, humid, and in the 90s, I wore a long-sleeved jacket because I was afraid people would notice the blisters on my arms and think I was contagious or just freaky looking. My doctor reluctantly took a punch biopsy and told me it looked like possibly poison ivy or a bug bite. I was so frustrated! I asked him why I would have blisters all over from a bug bite? He told me that nine out of ten times nothing shows up on the biopsy results. I left his office super disgusted and on a mission to find a new primary care doctor with a little more care for their patients.  

I was deteriorating—not just physically, but mentally. More blisters showed up. I was itchy and in pain. My skin was red like a sunburn, felt hot, and was slightly swollen. When I got the results from my biopsy, they pointed to bullous pemphigoid (BP). An immunofluorescence test was suggested, but wasn’t setup by my doctor. I had to wait a few days before seeing my doctor to discuss the results and treatment options. 

Bullous pemphigoid? What the heck is that? I immediately started Googling it. The first site I saw was a medical site that explained it as a potentially fatal autoimmune disease, and usually older people get it. Are you kidding me? I searched again and found the IPPF’s website. I couldn’t believe that there was an organization for this strange disease! I found so much information. I was very excited and started crying. Finally, a place that knew all about this disease. I found information about the physician map, signed up for it, and was emailed the information a few days later. I found information about dermatologists that specialize in blistering diseases in Boston and Connecticut, including Dr. Mary Tomayko. She was located about an hour away from me and had a clinic. I felt like I had struck gold! Of course, I cried more.

When I saw my primary care doctor after my biopsy results, he prescribed 40mg of prednisone for a week, followed by tapering every five days by 10 mg. I told him I wanted to be referred to Dr. Tomayko, and he was less than pleasant about it. He basically dismissed me. He also deleted the suggestion of poison ivy and bug bites from my records before sending them off to Dr. Tomayko. I wasn’t able to get in to see Dr. Tomayko for a few months, but I was happy to have an appointment scheduled with someone that should know what to do for my treatment. 

I had many setbacks over the two months leading to my appointment, but I also had support from the IPPF. Becky Strong, the IPPF Outreach Director, was amazing. She helped with my questions and sent me a patient guide to review before my appointment. I also had access to monthly webinars on different topics, and they were amazing. The first one I attended was on the side effects of prednisone. What great timing! After exploring the IPPF site more thoroughly, I saw information about the annual Patient Education Conference in October. My husband told me to sign us both up.

We needed to be more informed and meet other people who were dealing with similar issues. We became Healing Heroes (the IPPF’s monthly donation program) and received a discount on the Patient Education Conference registration. I followed my doctor’s advice about tapering down the prednisone dosage, but found that 20mg worked best for me and told him that’s what I wanted to do until my next appointment with Dr. Tomayko. Thankfully, he listened.

My husband suggested that I take pictures of my blisters in case they were cleared up before I saw Dr. Tomayko. Smart man! While I waited for my appointment, I got my list of questions ready, planned our trip to the conference, and felt somewhat relieved to know we would meet others with similar issues and have access to experts we could talk to. 

When I finally met Dr. Tomayko, I loved her office staff and she was wonderful. I wasn’t able to receive a definitive BP diagnosis until further blood work was done. Since my doctor never did the immunofluorescence testing, she couldn’t be sure. She explained that they needed to look for markers in my blood, which I understood because that was one of the many things I read about on the IPPF website. She ordered additional blood work, a baseline bone scan, a tapering of the prednisone by 2.5mg every seven days, and continued use of the clobetosol as needed. I made another appointment for a month later.

The blood work came back showing BP. In the month prior to going back to see Dr. Tomayko, I had a slight flare up and developed a couple of new blisters. She increased my prednisone dosage again and told me we would talk about an additional drug at my next appointment. At that appointment she prescribed CellCept®. She told me how it works, about side effects, and gave more instructions on my care, including a schedule of how she wanted me to taper off the prednisone.

We told her that we were attending the IPPF Patient Education Conference, and she was very excited. She told us what a wonderful idea it was, that we were going to enjoy it, that we would have all our questions answered, and to say hello to her dear friend Dr. Donna Culton (the conference co-host). We left feeling even happier about our decision to attend.

A short time later, my husband and I were off to the conference! We were both excited to gather with other patients and experts in the field. For the first time in a long time, I felt comfortable and at ease. Not only would I have an opportunity to meet others that would completely understand what I was going through, but my husband would also have an opportunity to gather with other caregivers who were supporting each other in their journeys as well.

I may be the patient, but this journey includes everyone in my inner circle, and they need support just as much as I do. Our lives have been disrupted and changed forever. We as patients need to keep in mind that we are not the only ones who suffer—those around us have to watch, sometimes helplessly, as we go through this. They are unable to do anything but comfort us. And in many cases, they take on extra work that they haven’t previously done.

As a licensed massage therapist, my husband knows how muscles and tendons work and interact. He discovered that BP gets worse around your flexors. The palms of my hands were swollen, so the more I used my hands and flexed my fingers etc., the worse it got. He took over the cooking in our house after never cooking full meals before. But he conquered his fears in the kitchen and kept us going. 

We arrived in Durham, NC, the day before the conference started due to a hurricane. There was an extra day planned for those of us who wanted to attend Dental Day at the University of North Carolina Dental School. Becky Strong started the day by sharing her story with pemphigus vulgaris (PV). It was hard to listen to because it brought up so many emotions for me. It was good for me to hear though, because listening to her in person made me truly feel that I was no longer alone. And she survived! She looked whole and happy. It was important for me to hear her story since I was still at the beginning stages of my disease. It was such a comforting and educational day. We met and spoke with so many other patients. In fact, one of the women I spoke to said they had just met another patient from Connecticut and planned to introduce us.  We got the chance to speak with Dr. Culton as well, and I told her that my doctor was Dr. Tomayko. She was excited to know that I was seeing Dr. Tomayko. What a good feeling that was!

The next day was a full schedule. After welcome announcements, we listened to Kenny Metcalf (Elton John entertainer) tell about his journey with PV. It was an amazing story, which included pictures of him throughout his disease. After seeing the pictures and his condition, one would never think that he had survived. But he’s alive, whole, happy, and doing what he loves—entertaining people with his gift of music. The rest of the day was broken into different pemphigus and pemphigoid sessions geared toward our own journeys. Our diseases may be similar, but they are also different. It was great to know that the speakers would address our disease-specific issues. Additionally, those in each session shared similar issues. We were able to swap information and keep in contact after the conference ended.

In the evening, we attended the awards dinner. This was totally different than a typical awards dinner. We were all relaxed and got to know each other as we ate and listened to music. We didn’t walk into the room and wonder who we could sit with. This was now a large group of friends, and we all had a common thread that joined us together. We weren’t rare in this room full of people! The camaraderie between all of us, including the doctors, was truly wonderful. The most memorable of all was the entertainment by Kenny Metcalf. He started our day with an emotional story of his life with PV and ended the day with a great show. He was Kenny, playing the part of Elton John in the early years. He was amazing! He had everyone singing and dancing, and there was just pure joy throughout the room. I can tell you this, I will never hear the song “I’m Still Standing” without smiling—and maybe even shed a few tears—while thinking of Kenny. In my mind, that will forever be the IPPF theme song. We’re still standing!

The last day was a half day of workshops. There were so many good ones to choose from—women’s health issues, ocular issues, wound care, and an extremely important one that made a difference for us: caregiving. My husband joined the caregiver workshop led by Janet Segall, the IPPF’s founder. He felt so much relief after attending that session. He was able to discuss his concerns and hear what the other caregivers were going through. He said that Janet led the session with great empathy, concern, and experience.

When the conference was over, it seemed too soon. We covered a lot together in just a few days. Both Gary and I felt relieved and so much better. We felt like we were part of a much bigger family and had made new friends who we shared similar experiences with. We had names and numbers to reach out to when things seemed too crazy to deal with alone.

The IPPF conference was the light and guide that walked us through a very dark tunnel. A tunnel we would’ve walked through alone. But everyone involved turned up the light nice and bright, and we found we were two of many. We were not alone and we would never feel alone again! We cannot wait to attend the 2019 Patient Education Conference in Philadelphia this year. We cannot wait to have the opportunity to reconnect with those we met last year and to connect with new friends. We hope that we are able to answer questions or just be supportive to those who are new to the conference and/or these diseases, to find out what is new with research and medications, and to hear the voices of other experts in the field. If you’re able to join us, look for Gary and me. We would enjoy that. And if nothing else, you’ll see, I’m still standing!

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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.

Check out the rest of the Patient Journey Series:

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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Check out the rest of the Patient Journey Series:

Patient Journey: Diagnosis

Welcome to our new story series focusing on the patient journey.

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.

Every week for the next eight weeks, we’re going to highlight a story that focuses on a specific part of the patient journey. OUR HOPE is that by sharing stories from our community, more patients and caregivers will realize that they are not alone.

Our first story in the Patient Journey Series comes in the form of a letter from Halima:

My symptoms started at the beginning of April 2018. My mouth was inflamed, and I had painful blisters on both sides that made it very difficult to eat or drink. I had no idea what was causing my symptoms, and I went to four different doctors. My primary care doctor told me that I needed to see an ENT specialist. The ENT specialist prescribed prednisone, but it didn’t work. I was told to see a rheumatologist, and they also prescribed prednisone. When that didn’t work, I was referred to an oral surgeon. The oral surgeon performed a biopsy, and I was diagnosed with mucous membrane pemphigoid (MMP).

I wasn’t sure what MMP was and which doctors were able to treat it. I researched and found out that I needed to see a dermatologist. I called at least eight dermatologists in my area, but they did not treat MMP. Some didn’t even know what it was. With my daughter’s help, we found the IPPF online, and I reached out to Becky Strong via email. Becky shared Dr. Ron Feldman’s (Emory University) information with me, and she reached out to him about my case. She followed up with Dr. Feldman and me to see how my treatment was coming along.

Dr. Feldman genuinely cares about his patients. It took almost a year before I was diagnosed, but with the right medications and care, I am on the road to recovery. I wish more doctors were aware of MMP; it would have helped me to receive care earlier.

I am very thankful to the IPPF for their help!

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Check out the rest of the Patient Journey Series:

In January 2013 my husband was diagnosed with prostate cancer. Thankfully, after surgery he was cancer free.

But in May 2015 our whole world seemed to turn upside down when he came home with a very unusual sore in his mouth. Fearing the cancer had returned, Tony went to our family doctor and was immediately sent to an oral surgeon for a biopsy. He had the results within days, but the outbreak spread like wildfire. By the following week, it had reached his entire mouth, sinus cavities, and throat. He was in severe pain, he couldn’t eat or drink and could barely speak.

The drive home that day was silent, both of us trying to stay calm and remember what the doctor had said. When we arrived home, we both went directly to the computer to research PV — which was the wrong thing to do.

While sitting in the oral surgeon’s office for what seemed like an eternity waiting for the results, the doctor assured us it wasn’t cancer, but instead told us Tony had pemphigus vulgaris. It was something we had never heard of and the doctor wasn’t that familiar with it either. He quickly explained to us what he knew about the disease and referred Tony to a dermatologist.

The drive home that day was silent, both of us trying to stay calm and remember what the doctor had said. When we arrived home, we both went directly to the computer to research PV — which was the wrong thing to do. Thankfully, the dermatologist, who was familiar with PV, was able to see him quickly.

Needing to understand this disease, I searched the internet for a support group and stumbled upon a video of Becky Strong. After a bad experience with someone claiming to be a PV support group, I researched more about the IPPF and finally reached out to Becky. We met for coffee and it was our first connection with a patient – someone who understood – someone who had been through the same pain and treatment – finally, someone who connected with Tony. That talk with Becky gave Tony the confidence to contact peer health coach Jack Sherman, who gave him the support he needed when he needed it the most. We can’t thank Jack enough. Our Austin, TX visit for the IPPF Patient Conference was priceless. How can you put a price on finding someone with the same rare disease, let alone an entire room of patients willing to share their stories and assure you there is hope?

Unfortunately after 21 months of a combination of prednisone and Cellcept, the treatment wasn’t enough to control Tony’s disease. He is now seeing a specialist at University of Illinois at Chicago and has been recommended for IVIg and Rituxan treatment. He has completed all of his pre-testing and is awaiting insurance clearance and a start date. These treatments are very expensive so the family is hosting a benefit to help cover some of the medical costs. IPPF has been generous in supplying us with materials to help educate everyone and we hope to spread awareness of this crazy, confusing disease.

Rudy Soto with his family.

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.

Many individuals with pemphigus and pemphigoid (P/P) present with chronic mouth sores, often well before lesions appear on the skin or other parts of the body. These painful mouth sores tend to be persistent and present as red, ulcerated areas. In some cases — especially those with mucous membrane pemphigoid — lesions may predominantly involve the gum tissue. However, most people with P/P suffer lesions in multiple areas of the mouth, including the tongue, cheeks (buccal mucosa), wet surface of the lips, floor of the mouth, hard and soft palate, and throat.

Oral lesions are often subtle, especially in early stages of P/P. As a result, P/P are often misdiagnosed by both medical and dental practitioners as thrush, food or toothpaste “allergies,” poor oral hygiene, viral infections, or erosive lichen planus. Many patients with P/P are first treated on an empirical basis (treatment based on observation and experience without a definitive diagnosis), often with multiple medications, until one approach offers some relief. The relative rarity of these conditions mean they are often not on a medical or dental practitioner’s “radar” when assessing a patient’s oral lesions.

So if you suffer oral lesions, how can you partner with your dental health care provider to come up with a definitive diagnosis? A thorough review of your symptoms is critical. Make sure your dentist or dental hygienist listens carefully and asks detailed questions about your concerns, such as:

  • How long have you had lesions?
  • What areas are involved?
  • Do you have any skin, eye, vaginal, or rectal involvement
  • What do the lesions look and feel like?
  • Do the lesions move?
  • Does your pain level and disease activity vary over time?
  • Do you currently have any active lesions?

Biopsy confirmed early gingival and mucosal lesions of mucous membrane pemphigoid. These lesions were managed as “non-specific gingival irritation, suspect allergy” for several months prior to a diagnostic biopsy being obtained.

The saying “diagnosis dictates treatment” is particularly relevant when it comes to treating oral ulcerative conditions.”

While early disease symptoms can be subtle, most of the conditions for which P/P are misdiagnosed are not typically chronic (with the possible exception of erosive oral lichen planus or chronic ulcerative stomatitis). Moreover, at least to a clinician with experience diagnosing and managing these conditions, the clinical appearance is quite distinct — toothpaste allergies and poor oral hygiene do not lead to widespread, chronic oral ulcers!

The saying “diagnosis dictates treatment” is particularly relevant when it comes to treating oral ulcerative conditions. Therefore, the best advice I can offer is threefold:

  1. Your dentist or physician needs to take your complaint seriously and needs to thoroughly investigate your symptoms.
  2. A diagnostic tissue biopsy is essential before your dentist or physician treats you empirically with antifungal, anti-viral, or corticosteroid medication.
  3. If the clinician assessing you does not insist on performing a diagnostic biopsy, insist on being referred to a clinician with extensive experience in the diagnosis and management of oral lesions (e.g an oral and maxillofacial pathologist, periodontist, oral and maxillofacial surgeon, or dermatologist).