Welcome to our “Inspiring Hope” series. For the next several weeks, we’ll share patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. Our first story comes from Noel Mudibo in Kenya.
Noel Mudibo is a pemphigus vulgaris patient from Kenya. He is also a passionate volunteer social worker with 11 years of experience. He has a BS in Financial Economics, Diploma in Petroleum Geoscience and Accounting Level 2. Additionally, he is a fiction writer currently writing about his childhood friend that was killed by the police in a Nairobi ghetto. He recently finished writing a compilation of traditional African children stories. This is his story.
Since childhood, I have had several health challenges. I had intestinal surgery at the age of two. At the same time, doctors discovered that I had an eye problem. Immediate action was not taken due to my parents’ financial constraints, which caused me to pay a heavy price. Years later in 2010, an ophthalmologist discovered that I had dual keratoconus, and they performed corneal transplants on my left eye in 2012 and my right eye in 2013. In 2014, I embarked on a transformative academic journey.
The turning point of my life happened in January of 2016. I developed lesions all over my body, including painful lesions on my tongue and groin, and blisters appeared in my mouth. I also suffered from severe constipation and bloody stools, and I needed to take strong painkillers. I experienced fevers, body weakness, and fatigue. Whenever I swallowed certain food, I felt a lot of pain. My skin became pale, and I developed brownish spots all over.
At the time, I was still in college. People thought I had HIV, but my friends took me for testing, and I was negative. I was still in a lot of pain and surviving on pain medication. I went to a clinical officer who examined me and told me I was suffering from an autoimmune condition called pemphigus vulgaris (PV). I was prescribed prednisone, but it did not make much of a difference as I continued to get lesions. At one point, my flare up was so bad that I had to be admitted to the hospital for two days.
In 2018, I saved 40 dollars and went to see a skin specialist who also told me that I had PV and that I needed an urgent treatment. He prescribed a combination of steroids. I felt better when I started the medications, but not completely. I still had frequent, severe flare ups. These flare ups would keep me grounded for several days and out of class.
I started researching pemphigus conditions online. I read about the research that had been done on treatments, including testimonies of people who have had pemphigus. Some patients died, some went into remission, and some of their conditions were still very active. During this research, I came across the IPPF. I also started searching for other people in Kenya who were suffering from PV, and I found quite a few. Some of them had very serious conditions that they succumbed to. I was very sad about that.
I continued my efforts to connect with the IPPF, and I started reading PV articles and testimonies with positive stories about people who had gone into remission and whose lives were almost back to normal. This information encouraged me a lot. I started communicating with the IPPF Outreach Director, Becky Strong- herself a PV patient in remission.
The articles on the IPPF website became my daily religion. I started reading them routinely and sharing them with other PV patients in Kenya. Some patients are not educated, so I have had to interpret the information for them. There are also some people in Kenya who believe PV is due to witchcraft.
Even though medication is quite expensive here and I sometimes go months without getting required steroids, I live a positive life full of hope and faith. I hope that one day, this condition will go into remission like Becky Strong.
During the COVID-19 pandemic, I have had challenges, but knowing that my immune system is low, I adhere to directives to stay indoors. In addition, I have recently filled out surveys provided by the IPPF. My most important request is for the IPPF to open an African office in Kenya. So many people here are suffering from PV, but they don’t have proper information.
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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!
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 sixth story in the Patient Journey Series comes from Toby:
When I was diagnosed with pemphigus vulgaris (PV) in late 2010, like most patients I’d never heard of the disease. Also, like most, I’d endured about six months of worsening symptoms before finding a doctor who was able to help me. After starting me on medication, the next thing my dermatologist did was to tell me about the IPPF. He encouraged me to reach out to them if I needed support, but I shelved the idea for a long time because I was sure I could manage by myself. I had the mistaken idea that if I followed my doctor’s instructions, I would “get better,”and soon.
Having PV was a wake-up call for me, however, as the disease proved to be tenacious, unpredictable, and unmanageable in my case on prednisone and CellCept alone. I embarked on a series of rituximab infusions ⎯ four over the past eight years ⎯ which have helped to control my symptoms. But the most important part of that wake-up call was the realization that I couldn’t go it alone. I called the IPPF nearly a year after diagnosis and talked to a Peer Health Coach, and the cloud lifted right away. For a while I attended support group meetings in the New York area. It was good to meet others who were facing the same challenges I was.
When I moved to New Hampshire three years later, I researched dermatologists to find one who was familiar with PV. Lo and behold, one turned up at UVM Medical Center in Burlington, VT, who had worked with IPPF Medical Advisory Board Member Dr. Victoria Werth at the University of Pennsylvania and co-authored an article on blistering diseases. I emailed Dr. Werth and asked her if she recommended this doctor, and she sent a thoughtful, encouraging response. I remained under the care of that doctor for five years until this year, when I moved to North Carolina.
This was a lucky move in many ways. Last October I attended the IPPF annual conference in Raleigh, NC, co-hosted by Dr. Donna Culton at UNC’s School of Medicine, and she was incredibly knowledgeable and inspiring. Because the IPPF set up the conference to make it easy for patients, staff, and physicians to mix, I was able to have one-on-one conversations with anyone I liked. There were cocktail hours, meals, and time between presentations, and everyone was approachable. I sought out Dr. Culton to say hello and chat with her. Afterwards, I told my daughter Kate, who lives in the area and had attended the conference with me, that I could do worse than moving down to NC and having Dr. Culton as my dermatologist. Then I made it happen. Two weeks before I packed up my car and drove the 800 miles with my cat to my new home, I had an appointment with Dr. Culton on the calendar!
Having excellent care and support (and even an infusion center) right here in my neighborhood gives me a sense of security and well-being, and I can trace that support directly back to the IPPF, who helped me find the way. Thank you, IPPF!
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.
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.
In the beginning of treating a bullous skin disease like pemphigus, prednisone is usually prescribed. A high dosage over time, can be tapered down. While we are thrilled that the dosage is being lowered, the side effects of tapering can be debilitating.
It is safer to decrease the dosage by no more than 5mg per week. Tapering too quickly can either cause a flare-up or have you feeling like your muscles are rebelling.
If you abruptly stop taking prednisone or taper off too quickly, you might experience prednisone withdrawal symptoms: A gradual reduction in prednisone dosage gives your adrenal glands time to resume their normal function.
Essentially this is a drug that mimics your body’s natural hormones produced from the adrenal glands. When prescribed in significant doses, Prednisone works to help suppress inflammation. In the event that a person’s immune system is attacking its own tissues (as is the case with autoimmune diseases), this drug can help reduce activity by suppressing immune system functioning. It affects the “HPA” or hypothalamus-pituitary-adrenal axis when taken longer than 7 days.
Side effects can include the following: Abdominal pain, anxiety, body aches, decreased appetite, depression, dizziness, fatigue, fever, joint pain, mood swings, muscle soreness, nausea, weakness. Not everyone experiences the same side effects, but these are the most common.
Taking an OTC (Over The Counter) pain relief can be helpful as well as taking in more salt and sugar that helps with low blood pressure and blood sugar.
The body needs to keep moving although body aches can make you feel as if you don’t want to move! What you can do is take walks at a leisurely pace until you are comfortable enough to step up the pace to a brisk walk. Stretching every day is essential to keep your muscles flexible. Hurts,
But do what you can. The price of being motionless is worse
if you don’t. Your muscles will tighten and you’ll lose mobility. A beginners yoga DVD can help you move in the beginning. Exercises in a pool help because the weight of the water pushes against you gently and cushions movement.
Meditation can help to sooth the nerves…keeping calm is very important anyway but especially when tapering because you more anxious than ever. Listening to meditation music (Youtube if don’t have any) helps. Talking to family members and closest friends helps too as they will understand if you seem moody or nervous. The more you communicate, the more they can empathize and realize you need patience and humor from them! Yes, laughter helps!
If you find that you are still having difficulty with body aches and pains and muscle weakness, consider asking your dermatologist for a referral for physical therapy. Six visits are all you need to help you with exercises to keep you in motion and help you to get to feel better.
Remember, when you need us we will be in your corner!
In a previous Coaches Corner I have given prednisone tips. It is a good time now for an update as there are new patients who are diagnosed and who are leery of the side effects that can come from taking a steroid treatment.
No one chooses to take prednisone as a medication. However, it is used frequently for a variety of medical conditions, like pemphigus and pemphigoid (P/P). Prednisone is often used as the first line of defense against P/P. It works rather quickly and is effective in diminishing disease activity.
To learn more about prednisone, how it is used, what precautions to take before taking it, dietary suggestions, and side effects please go to this link from the U.S. Library of Medicine: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a601102.html
A few of the side effects from taking prednisone can be:
Headache, dizziness, difficulty, falling asleep or staying asleep, extreme changes in mood, changes in the way fat is spread around the body, extreme tiredness, weak muscles, and more.
Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:
vision problems, eye pain, redness, or tearing, sore throat, fever, chills, cough, or other signs of infection, depression, upset stomach, lightheadedness, shortness of breath(especially during the night), swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs, difficulty breathing or swallowing.
Please note that not everyone experiences every side effect and that even taking treatments like aspirin can come with side effects. Everyone has his or her own unique physiological makeup. Therefore, while experiences with prednisone may be similar, they are not exactly alike.
