The light at the end of the tunnel when living with PRP

By Joseph Padannamakkel

This essay is about ‘Pityriasis Rubra Pilaris’. PRP stands for Pityriasis Rubra Pilaris which is a rare disease, hardly known to the medical world.  I was diagnosed with this condition in October 2015. This write up may be an adventurous attempt for me because I have no medical knowledge regarding this subject. My personal experiences with this condition, and the enormous amount of suffering it has caused are what inspired me to write this essay, so that I may bring awareness to other PRP patients especially in our  community. It may be useful for people who are suffering from this illness and could also be helpful to their loving families. I hope that my personal trials and tribulations with this condition inspire and encourage others who are suffering with Pityriasis Rubra Pilaris.

Being a patient that suffered from PRP I believe that I have every right to bring this topic to public attention.  I believe that the patient should study the disease and its effects because they are the ones managing their day to day life. Patients have the right to accept or to reject the medication, once they study the consequences and side effects. We must find a responsible doctor with compassion, patience and good bed side manner. There will be many ups and downs of emotions with PRP, and many questions. The future may seem incredibly bleak. The choice of an undependable caregiver in the sea of uncertainty that PRP brings will cause us to break down even further.

 Luckily I found a phenomenal Dermatologist (Dr. Scott Sanders, MD Dermatology, New City, NY). I am able to control my disease because of  his direction and expert advice. He is the most compassionate doctor I have ever met. Whenever I visit his office for light therapy he is there with a cordial smile. His accomplishments are a magical blessing to the medical field. Even with his busy schedule, he cares so much about the progress of my health. He was incredibly happy that he was able to diagnose my symptoms as being due to PRP because it is an extremely tough diagnosis to make. I go to his office three days a week for light therapy and I take Soriatane Capsules twice a day. This has given me immense relief, and for the first time since this nightmare started, I can smile. All of the credit goes to my amazing dermatologist, and I know with full confidence that I can beat this disease because of him.

I think back to the beginning of this journey… how it all began. I had minor glaucoma since 1990 and my health insurance required that I get a referral from a primary doctor in order to see an eye specialist. I chose a Malayalee lady as my primary doctor. I visited her office for a routine checkup and to get a referral for an eye specialist. On that day, her office took my weight, BP, etc. My weight was 160 pounds.  That was the normal weight that I had always maintained in the past. They found my cholesterol level was high, so to bring it down, she prescribed Crestor tablets. I began to take this medication every day. All of a sudden, I saw hives on my entire  face and body. It was like my face and body were marked with red bruises, and there was intolerable itching from head to toe.  I thought that I was probably just experiencing the side effects of the Crestor pills.  The hives went away after six weeks. Then, out of nowhere, my skin got incredibly dry with rashes and it was shedding. I had been diagnosed with Psoriasis since 1998, and I thought that maybe I was having a flair up of my Psoriasis. The rashes on my body were bothering me from morning to night without any break in between. I could hardly eat or sleep. I was afraid that I would lose my mental capacity because the continuous itching was bothering me to a point that I could not even think. My palms and feet began to swell, I lost hair on my arms and my legs, and the hair on my head became malformed and thin. Both of my feet had immense swelling and I was unable to walk without the support of a cane or without others to help me. I also lost 30 pounds and I had to wear my belt buckles on the tightest fitting in order to fit my pants.  The dry skin was shedding like snow everywhere and I became extremely depressed and insecure. I began to hate myself because anywhere and everywhere that I looked, my skin had shed. As my life became hard, I became more depressed. I took oat meal baths everyday with the hope of relief. I peeled my itching skin from all over my body while I was in the tub. I know that peeling our skin on our own is not advisable but I did not know what else to do, because I was unable to control the itching. I used every cream available on the market to no avail. It was very difficult for me to even tie my shoes or shave my face because I had no sensation in my fingers or my hands. My feet were also swollen and without any sensation. I was unable to eat food with my hands and even write. There was no problem when I typed, so I continued my hobby as a writer and kept writing articles for newspapers, so that I could keep my mind occupied. I looked up in my mirror and saw my strange face with scars every single day.  I walked everywhere with my disabled feet that were swollen. I felt like a crazy man being of no use to anybody, and I felt as if I was a burden to all those around me. As my problems became at their worst, I went to a nearby Emergency hospital. They could not diagnose my symptoms even after running a battery of tests. The doctor from the emergency room advised me to see a dermatologist to find the cause of my symptoms and its solution. They sent me back home without any answers and without any relief to my symptoms. Shortly after this, I found Dr. Scott Sanders, MD Dermatology who is located in New City, NY, and for the first time since this all began, I started to feel hope.

Usually Pityriasis Rubra Pilaris affects middle aged people and is very difficult to diagnose by an ordinary doctor. We need an expert dermatologist to diagnose and to explain the reasons the symptoms are generated by this disease. Its treatment can only be done under the care of an efficient dermatologist. It is extremely difficult for the victims of PRP to cope with their day to day life.  Statistics show hardly one patient is affected by PRP out of five thousand dermatology patients.

PRP is not a life threating disease. It is not contagious to other people. The root cause of how it is implanted in body is unknown. During the year 1800 a medical research group released information about this disease and what it is. The findings of their research were the first in medical history. The letters in PRP denotes a meaning and explanation.

·         Pityriasis: characterized by fine, small peeling skin-like plaques;

·         Rubra: red;

·         Pilaris: relating to the hair follicle.

PRP problems are hard to get rid of once we have the disease. The skin is always peeling and shedding, and new skin is rapidly forming which continues to peel. It is a vicious cycle, and as the new skin comes and goes, there is an immense amount of itching. The color of new skin could be red or orange depending upon our ethnic race.

 There are many creams available on the market for temporary relief.  We should use the cream or lotion at least two to three times a day in order to prevent loss of moisture from the skin. It also helps in reducing the itching. Perfumed lotions are not good for PRP patients because they contain alcohol. We have to drink plenty of water for the best of our skin. Always take a cold bath rather than a long hot bath in the tub. The hot water may feel more comfortable at first, but it could cause more drying of the skin in the long run.

There is limited research on PRP and it is still a very much unknown disease. Researchers find it could be hereditary in origin, or without any reason; It could be viral or bacterial. Anti-biotics, mental stress, major surgery, and heavy sun light could cause PRP.  So far, there is no medicine available on the market that can completely cure PRP. But there are medicines that can cause temporary relief. The medication prescribed for PRP are the same as the prescription for severe Psoriasis patients. The PRP and Psoriasis diseases belong to the same family.

As the cycle of  reviving skin, and itching as its consequence continues, our mind and body are always disturbed and uncomfortable. The symptoms on our body are noticeable from the very beginning as yellowish bumps. The signs of PRP could begin on any part of the body. Extremely dry and flaky skin forms all over the body. The skin sheds even by simply touching it with our hands.  The hair from the head and body also sheds. The patient may get non-sensitive palms and feet. It is a characteristic of PRP patients that their fingers might be weak with no sensation. The nails could be shed down. The palms of the hands might be hard like rock or wood. The eye lids might be pasted up.   PRP is usually an extension of psoriasis or eczema. It could be the impact of certain medications. The patients constantly feel ill and extremely tired. The body temperature is uncontrolled and patients feel cold, even when it is hot.  PRP can cause problems to the organs because of insufficient water in the body. The liver can also be enlarged.

Patients get very confused as to what they should do next when they get the first symptoms of PRP. They wonder whom they should contact regarding their symptoms. It is quite natural for people who are suffering with PRP for the first time in their life. The dermatologist’s expertise is needed to get the right diagnosis from the very beginning. The dermatologist does the biopsy test to determine what it is, along with the help of an expert pathologist.

Once the dermatologist decides the diagnosis of PRP, the next step is they would tell the patient what kind of PRP the patient is suffering from. The treatment depends upon each individual and his or her past medical history. There are different types of treatment options available. During the course of medication, the patients should be closely monitored. They have to do blood tests according to the doctor’s instruction. If the patient takes a retinoid or immune suppressant medicine there are chances there may be side effects, so patients have to think about the side effects of  medication too. The medicine will cause more dry skin to shed. Patients should remain as hydrated as possible and try to drink as much water as they can.  Each month the doctor decides what kind of blood test is required for the patient.

PRP patients should be careful of their emotional feelings too.  Mental health is just as important as physical health. It is very difficult to distinguish between mental health and physical health. It would really help the patient to have a strong support system. It is better to talk to others whom we trust about this illness. We have to consider our mental balance at all times, and avoid stress. Those who are close to the patient should also carefully monitor the patient’s mental balance. Those patients who are unable to handle the stress or their emotions should seek the help of a psychiatrist

Usually, PRP patients will not sweat at any weather condition even if the temperature is extremely hot. The cause for the patients not sweating is unclear in medical science. It could be the heavy loss of skin from our body. The sweating by our body controls our body temperature. PRP patients are unable to tolerate the cold because of loss of skin. It is very hard to tolerate the hot temperature too. The reason might be the loss of insulin and skin from our body.  Patients sometimes complain of feeling cold in hot temperature. The air conditions in shops and theaters will be bothersome to PRP patients and make them feel intolerable cold. They should carry warm clothing and accessories (such as sweaters and blankets) while they are travelling regardless of the season.  While most passengers in a car may enjoy the air condition, PRP patients are in constant discomfort from it and need blankets to protect themselves from cold. The persistent itching causes a disturbance to social life, and social activities. The itching can cause wounds to the body which could cause further complications. Wounds can be a source of infection.  Long baths in hot water is not good for the skin. It could trigger more dry skin on the body.

It is required that PRP patients should maintain healthy diets. As the skin is shedding, the body needs more nourishment from food.  Plenty of fruits and vegetables should be added with our dishes. Patients should avoid food that contains heavy salt (such as potato chips) because this will cause edema. If the patient gets help from a nutrition doctor, they should inform the nutrition doctor about the conditions of their PRP. The patient should avoid sunlight as that causes damage to the skin. PRP patients may require wearing long sleeve shirts and caps to protect their body from sun light.

PRP patients need to use cream and lotion lavishly to prevent itching and control moisture to the best of their ability. As the skin is shedding, the patient may need a vacuum cleaner nearby. It is very difficult to wear black clothing, because the shedding white skin shows clearly on black colored materials. The skin shown on our clothes is embarrassing in front of others.

The three words ‘pityriasis rubra pilaris’ are not happy words for me. These words are not easy to explain to other people. These three words give me conflicting emotions that threaten to break my spirit. There are ups and downs…a roller coaster ride of happiness and sorrow as I muddle through life with PRP. I feel as though my life changed in an instant when I began experiencing the effects of PRP. My inner mind sometimes feels like a ball of fire. It is in every single thought of my daily life. I have looked in the mirror and I was brought to tears…I felt trapped and lost…as if all of my wishes are disintegrating right before my very own eyes. A feeling of helplessness and hopelessness as I remember that the truth is divergent…that it may continue for many years or for the rest of my life.

The shedding skin of my scalp would always fly up in the air. My feet have been swollen like I had elephantiasis. The itching of my body has become a constant part of my life, and everything in life must be planned around the effects of the disease. I hesitate to meet other people, visit their homes and to even attend family events. Family and friends often try to console me by telling me that I will be cured, but in all honesty, nobody can predict when or if that is going to happen. It seems like such a brief period of time when I feel happy and comfortable, before my skin begins to shed again…the cycle continues with no end in sight and again the happiness melts away to a mind in pathetic condition.

 I am now reminiscing about my healthier days. I was a different person while I had a healthier life. Today, I am a new man with a transformed and tranquil mind. I no longer have the temper that I had in my younger days. The medical condition of PRP is not a joke to anybody physically or mentally. It also has the potential to break our finances. Still, it is a consolation that having PRP is far better than many other medical conditions such as cancer or heart disease- with this thought, I suppress my sorrow within my heart even as I am fighting the effects of PRP. On a positive note, the shedding of skin from our face and body can be considered as a blessing in disguise. As the old skin sheds and new skin is revealed, that makes us look fresh and youthful. I feel younger when I see luminous and shiny skin being generated on my face and body.  It causes me to remember the good old days of my youthful age.

Though occasionally I see tears in my eyes because of my symptoms, sometimes I feel like my young age is back again when I am looking in the mirror.  I feel that my wrinkles are disappearing when fresh and soft skin is covering my face. I transport my mind to the days of my youth whenever the fresh skin appears on my face and body. In my mind, I am cheating the effects of old age, at least aesthetically. I feel as though I have hidden the scars of my old age.

Many years ago Mikle Ottorbi’s daughter asked her dad who had PRP, “Does PRP mean pretty red people?” Mikle laughed at his daughter’s question. (Pretty Red People). That saying in America causes laughter to PRP patients all over. Even today people are laughing because of this saying.  I am also laughing, even though I have ethnic dark color. I have the full support of my family and my friends to console me during my illness and I am being treated by the most brilliant and kind dermatologist.  I am confident that one day I will get well from my PRP. This confidence is allowing me to go forward in my life full of optimism… It has been a tough journey, but I am finally starting to see the light at the end of the tunnel.