Back to the Timeline

Back to my timeline and my story.

By now it is early July and I have been diagnosed with PRP about a month and have been taking Acitretin for 3 weeks. I feel fortunate to have been diagnosed and have been able to begin treatment in such a short time span. Some folks endure this for years with no diagnosis, mis diagnosis, etc. At this point I am able to tell that Acitretin is serious business. My skin is dry, my lips are dry, my mouth is dry, my nose is dry, I drink +2 litres of water a day and I still feel like I am in the desert. The edema in my lower legs and feet has abated somewhat, and I  have a bit more energy. I am still freezing cold all the time, I wear winter time clothes and it is 90's and 100's because I live in Houston Texas. I am not uncomfortable, I just feel normal in this heat. I wear hoodies when I am inside in the A.C. I am still not able to sweat. I do yard work but it takes me twice as long as it would normally. My skin looks a little better. Here are some shots of my skin during this time.

The hole in my hand between my second finger and my palm is the real deal. I used 2 bottles of liquid band-aid on that spot before it was completely healed up.

Why I Am Doing This

I have several reasons for writing a blog, some selfish, some selfless. I want to become a writer and this is good practice. But mostly, I hope that someone or perhaps several someones will find benefit in reading my story. I know that when I was newly diagnosed, a mere 5 months ago, that the first thing I did was what anyone would do, go online and look for information. At that time I googled the term "pityriasis rubra pilaris" and I pulled up information that was 10 years old. This in my opinion is just sad. I had to really dig in order to find any good information and it was only by chance that I stumbled upon the PRP Alliance Website I don't even recall how I ran across the site but it was buried on some other site. The PRP Support email list had no recent relevant information either. Today, thanks to the efforts of Mr. Bill McCue and others, finding information about PRP has become a bit easier thanks to some higher ranking sites linking the PRP Alliance site. I hope to one day see the PRP Alliance site at the top of the list when you enter the term "pityriasis rubra pilaris" into any search engine. Thanks again to Bill McCue for all that you do to advocate for the PRP community as a whole. So the answer to my original question, I am doing this to help those who need assistance navigating this condition. It is scary and frightening to discover that you have PRP. Not knowing what to expect (it changes daily for awhile). Thinking that you could potentially have to endure the condition for years. Not being able to control certain aspects of your body, how cold you get, how much skin you shed. The self-conscious aspects, am I flaking everywhere (yes), if you are a business person and shake a lot of hands (are you contagious dude), and the host of other social aspects that you deal with. Will I always be able to work (some have to stop). Fitness aspects (difficult to run anymore when you can barely walk some days). Marital aspects (does my spouse still find me attractive), sexual aspects, etc. I know that for me, PRP has been a life altering encounter. I do my best to be like I was before, but some days I can't and this can be frustrating. If you are someone who has been recently diagnosed with PRP or are a caregiver of someone who has, do yourself a favor and look over the PRP Alliance site, and join the PRP Facebook Support Group, you will be welcomed with open arms because after all, we are all in this together, and we can learn more together than we can by ourselves.

Peace

The Adventure Continues

By now it is late June and I continue on this crazy skin covered road that I am travelling. I have been able to work from home and have even managed to somehow get a promotion. The introduction of acitretin has helped my face immensely my face is almost normal, I have some mottling on my forehead but the rest of my body is bright orangish-red color. My legs and feet have developed a severe case of edema and I am barely able to stand and walk for about 2 weeks. I am concerned and I call Dr. Hsu and I am told that it has to get worse before it gets better. WOW, I don't like that answer. During this time my skin never looks the same two days in a row, the itch never abates, and I feel that I have been burned by acid all over my body. This condition is bizarre for sure. My hands have thickened and begun to peel.

The following week my hands look like this. All nice and peeled. Things actually feel normal to touch, not all soft and fuzzy.

My Introduction to the Real World of Dermatology

I was fortunate in the fact that I was able to get an appointment at the Baylor University College of Medicine Department of Dermatology within 2 days of calling. I figured that it would be a month at least before I could see a doctor there. Amazingly, while I was on the phone with the scheduler she sees a cancellation occur on the calendar at that moment. WOW talk about divine intervention. I am scheduled to see Dr. Sylvia Hsu on June 19th. I go to my appointment and have the examination and I am given my treatment options. Dr. Hsu tells me that I am "special" because this is such a rare condition that I have been endowed with. She says all you PRP folks are special and unique, and not one of you is the same to treat as another one. I ask her how rare it is and she says that she sees about 1 case a year, but there was one in to see her the day before. I also know of another person in the PRP Facebook group that sees her as well, so that is 3 in the course of a month. I find this very interesting. So my treatment options are acitretin 25 mg per day or methotrexate. Both can have nasty side effects but I choose the more conservative of the 2, the acitretin. I have no interest in suppressing my immune system. So it begins, I begin the medication the following week. I have to wait to start because the pharmacy has to order the pills.

The Unbelievable Itch

There are some medical websites that give the description of PRP and state that it can be accompanied by a mild itch. Bullshit!! The itch that accompanies PRP is real and not in any way mild. The only way that I can describe this itch is that it feels like millions of points of toothpicks trying to poke through your skin, from the INSIDE! For me in the first few weeks of the condition starting I did not itch very much, as time went on the itch escalated into a tornado of anguish and despair. You have heard of the movie Sharknado well there should be a movie for PRP folks called Itchnado because that is what this is. Someone could be locked away in an asylum solely due to this itch. Fortunately there is an antihistamine called Hydroxyzine that works well on this itch and I have 120 of them. In early and mid-June I am taking 2 of these at a time just to sleep and still wake up at 1 to 2 a.m. itching like mad.

The Mystery Revealed

As soon as I begin to taper from the steroids that my primary doctor prescribed, the condition seems to get worse. At this point my face is still in bad shape, my arms are extremely red and raw and the skin on my palms continues to thicken and crack making doing any task with my hands painful. The affected areas of my body is still primarily above the waist, although I am seeing some spots on my upper legs. I am finding it difficult to make it through any day without a rest period. I am however still going to work every day and when I get home my energy is completely zapped. The second week of June I finally have my appointment with a local dermatology clinic, Spring Dermatology, and the thought is that this is still potentially a bad reaction to something. I receive shots of steroids this time and another dose pack of steroids to take over the next week and some topical steroids to use. The dermatologist tells me that if I feel feverish or it begins to spread more to go to the emergency room. Over the weekend it does continue to spread more to my torso and legs and now on my feet. I follow the doctor's instructions and go to the ER because of this and I just don't feel "right". I get to the ER and the intake folks are like "whoa let's get you in here ASAP. Just as a note as to how different and rare this condition is, the ER doc said that in 25 years he has never seen anything like this, especially the way that this was creeping from the soles of my feet up towards my ankles. I was given I.V. steroids and sent home. Because I ended up in the ER the dermatologist wants to see me in the office the next day and take a biopsy of the skin in the forearm that this first started. The biopsy is taken and sent to the lab for analysis, by this point she has not mentioned PRP to me but she did specifically request a PRP analysis be done. I anxiously await the results of the biopsy for a week. I have bowed out of going to work and I am taking sick time because I am too tired to make it through a day, and I am freezing constantly. The biopsy results come back and she gives me the news that this is PRP, what it is and how it is treated, that the type I have does go into remission. And that she can not treat me because of the drugs that are used to treat the condition. I must either go to UT or Baylor down in Houston. I go home saddened by the news but grateful that this will likely get better. I am posting shots of how my hands and feet look at this stage of the progression.

Great Resources for PRP Patients and Caregivers

If you or someone that you know is suffering with PRP here is a short but very good list of resources in which you can learn all there is to know online about PRP. The Facebook groups are closed groups and require a request to join. Please don't join the groups with the intent of spamming us with bullshit. We are a very serious group that uses the group as a daily resource of support and encouragement because this disease is no joke and is very difficult to deal with for both the patient and their families and or caregivers. If you join and are a spammer, you will be dealt with swiftly.

The Facebook Groups
 The PRP Facebook Support Group (requires a request to join)
 and
 PRP: Going the Natural Route (requires a request to join)


There is also the PRP Alliance website that is maintained by Mr. Bill McCue who ironically enough is also a resident of the great state of Texas. Bill acquired PRP in 2012 and suffered for 20 months before going into full remission. Bill is very involved in advocacy for the PRP community as a whole, he has a good deal of support to assist in his efforts but he has accomplished a great deal of the work by himself. Bill is an awesome man and I hope to meet him in person one day since we both live in the same state.

The PRP Alliance Website
PRP Alliance | The Elusive Diagnosis

This website will single-handedly provide you with a treasure trove of information related to PRP, with newsletters, informative guides and personal stories told by those who have suffered and still do suffer with this strange and confusing disease.

Mysterious Skin

At this point I was not itching very bad and the steroids seemed to helping a bit to calm down my skin. However my skin had a very odd appearance and I have the feeling that there is still something going on. Will remain calm and just wait for the appointment with the dermatologist in a week and a half. This was around June 1st. Here are some shots of my skin and the changes that are occurring.

At this point my face is in really bad shape. Unfortunately I never took any shots of my face. My eyes are very swollen, the skin on my face and scalp are flaking like crazy and my face is very red and it looks like I have a severe sunburn. Another odd thing that I have noticed is that I no longer can sweat and I am cold all of the time. Also because I am starting to get an additional layer of skin on my palms, simple everyday tasks like opening things is becoming increasingly difficult. Everything that I touch feels very soft and fuzzy.

The Beginning of My Journey

My adventure with PRP began in May of 2015. It all began very innocently with a few trips to the swimming pool. I have lived in the south my entire life and have always spent time in the sun. I worked outside in the sun for 16 years in Florida and I currently live in southeast Texas, I have never used sunscreen. For the past 15 years I have had an indoor job but I have spent generous amounts of time in the sun with no problems. This year when we started going to the pool, my wife suggested because I am getting "older" that maybe I should start using sunscreen and while I am at it make an appointment to see a dermatologist for a well skin checkup. I said fine and did both. On one particular trip to the pool I used sunscreen on my face, my arms, chest and torso, but not my legs. The entire time I was swimming my eyes were burning like mad and burned for hours afterwards. I also noticed my hands felt burned and tingly and were red with a very clear line of delineation between my palms and wrists. I also noted some rash on my arms and chest. I decided that I was going to check out the sunscreen to see what it's ingredients were. As soon as I touched the sunscreen bottle my hands lit up and I used my finger to scratch an itch beside my eye and my eyes immediately started burning like the day at the pool. I said wow I am allergic to something in this sunscreen. Here are some shots of my arms chest and the sunscreen. This was around May 24th 2015.

The following day I made an appointment with my primary care physician to have a look at me. At this point this looked very much like an allergic reaction to the sunscreen. Was I ever wrong. The doctors's visit netted me some antihistamines and a round of steroids. At this point I had an appointment scheduled with a dermatologist as well.

More Information on PRP

PRP is an extremely rare condition with somewhere in the neighborhood of 800 active cases in the United States. The disease does not discriminate, it likes men and women equally, it also does not care what race you are or what country you come from. I suppose that if you had to classify the type of disease that it is, it would be an auto-immune condition, and it involves severe inflammation of the skin. Due to the rarity of the condition there is not much information online about the condition and there is not any continuous research being performed in relation to the condition

The Reason for My Efforts

I am creating this blog to chronicle my experiences with Pityriasis Rubra Pilaris or PRP as it is known to the dermatology world and to those who have this rare skin condition. PRP is also known as "Devergie's disease". The condition itself is not life-threatening, though some of the complications that can come along with it can be quite severe and could cause death if left unattended. The condition is characterized by reddish-orange patches of skin, flaking and peeling skin, thickening skin on the palms and soles of the feet. Some of the medical sites that give descriptions of the disease state that the itching that accompanies the disease is mild. This is NOT true. This condition has the worst itching that I have ever experienced in my life. And the itch does not originate on the surface of the skin like a normal itch, this itch feels as if it is underneath your skin. Some of the other things that go along with the condition is the inability to sweat, severe edema of the lower extremities, loss of body hair, among others. The condition is chronic and is no walk in the park if you have to deal with the disease.