A Pause to Think About What's Going On

It's been a bit over a month since I posted an update, recent events prompt me to write another. PRP is an odd disease in the fact that at least in my particular case, it has been cyclical. I am the type of person who is acutely in tune with their body, I have been this way my entire life or at least as long as I can remember all the way back to my early childhood. This can be a good thing but as I have learned over time, that for me it has generally been a curse. It has created untold health anxieties and other emotional discontent, however I prevail. That being said, I have been keenly aware of each cycle of my PRP for the past 2 years. During the acute phase the cycles were anywhere from 3 weeks to 6 weeks apart and generally lasted from 7 to 10 days. During the weeks when things were bad, I referred to these as the "down" cycles, when things were better, I referred to these as the "up" cycles. Even though I have had significant healing, I have continued to have cycles, currently the cycles are between 8 and 10 weeks apart. One may ask when you are acute how would you know if you were in a down cycle? More flaking, shedding, skin being very sensitive and feeling burned, more red, more tired, more chills etc. When you begin to heal, you do not really flake or shed skin anymore and the skin returns back to a mostly normal color. So this past week I have gone through a flare or a "down" cycle. It started early on in the week with me being tired, really, really tired. Then I would get these random spots itching, then I would have what I refer to as heat pulses which are fluctuations in body temperature. Finally I realized, ok I am having a flare. But this one had more symptoms than what I have been experiencing, my scalp was really itchy and even flaky, the areas on my face just above by beard felt sensitive and burned. I was experiencing more symptoms than I have had in months. Once you have ever had PRP, you do not forget it, and what you have been through. I would be lying to say that I have not been scared this week, scared to go back to that dark awful place that PRP takes you to. After you come through the acute phase, you get really used to life being back to mostly normal, and you never want to return to where PRP took you, where you had no control over anything your body was doing. Truth is, do we ever really have that kind of control? We try to put ourselves in the best condition to stay healthy that we can, and that is really all we can control. PRP just shows up one day unexpectedly, none of us ever said, hey if I keep doing this I am going to get PRP. That is what is most scary. For now I feel that I am on the other side of the flare, I am not as tired, my skin is feeling better etc, so I will continue to hope that I am still on the 3 - 5 year track with PRP healing, I am at year 2 now. I will hope and I will pray that it is still going away.
I will continue to run, I will continue to eat well (cleaner than I have been, I am suspicious that this last flare has been worse due to my diet) and live life to the fullest extent possible. I have some wonderful things going on this summer and I intend to enjoy and appreciate them and to be grateful for each and every day of better health. Be well, and Be Healthy.

-Sean

P.S. I found some more pictures from June and July 2015 when I was just beginning to become familiar with PRP. Posting them below. Thanks for reading.

Wow It Has Been Over A Year

    It has been well over a year since I have updated this blog. I'd like to report that I feel that I am in remission, remission with remnants is what I like to call it. I will never have an 'official' medical opinion I suppose since I have been under no medical supervision for PRP since September of 2015. I feel that I am in remission as most of the evidence of PRP has abated. My skin for the most part looks normal, I have 2 small spots on each cheek bone that becomes more red from time to time, I have a scar on one cheek so it is hard to say if that is a PRP spot or a scar. All I know is that it flakes about once a week. I have a small spot on my chest and 2 small rows on the very tops of my shoulders, my scalp still gets a few scales and itches most every day. And my nose peels about once a week. I don't get many episodes of extreme tiredness and fatigue that I used to, and I feel normal. I began to sweat again in Feb / Mar of 2016 and when I did, I took up running again for the first time in about 20 years and I feel that this has contributed significantly to my improvement. Consistent exercise and movement are essential to our overall well being. We are not designed to sit at a desk for 10 hours a day and do work, and I feel this is contributing a great deal to the epidemic of poor health that exists in western society. I have learned so much about myself over the time since I was diagnosed with PRP. Namely the behaviors which possibly contributed to the onset of PRP, but who really knows. Our bodies and systems strive to be in homeostasis at all times and unfortunately modern life more often than not gets in the way of this. Prior to my onset, I had 2 to 3 years of dealing with severe anxiety and sometimes having panic attacks. A year prior to the onset of PRP I did a significant amount of work to overcome this and find ways to deal with life and all that it throws at us in a productive way. At the time of onset, I was studying and taking 2 difficult professional exams for certification I wanted to obtain as well as interviewing for a new job, spending 3 hours a day commuting in crazy Houston traffic and all of the other things that existing in this crazy modern world throws at us. My diet was not great, I was not exercising enough, and my sleep was not adequate. Something had to give. I was likely dealing with some severe systemic inflammation.This all finally manifested through PRP. Today I am much happier and much healthier at 50 than I think I was at 40. I will continue to do what I have been doing to get my body in an optimal state to heal. I hope that at some point in the near future the research that is ongoing will pinpoint what causes this treacherous condition and help those who suffer daily in so much pain and anguish. Until then, PRP warriors, hold your heads high and know that you are special, unique and one of a kind.

Apologies an Update and What Seems to be Working

Blogs are great, you can work on them whenever you want, or not. Therein lies the problem, you need to be a very committed blogger to keep your blog updated. I am trying to get better at this. So you all have an apology from me that I have not been so committed to keeping this updated. Back at the start of the holiday season of 2015 some of the side effects that I was beginning to experience from the medicine that I was prescribed, acitretin, were starting to take their toll on me, keep in mind that all of these can also be attributed to the PRP process itself, but I felt that my body was telling me that the medication was not helping me with these symptoms. I was miserable, my skin burned constantly, I was constantly peeling, I was tired, and my eyes were in terrible shape, I would wake up each day and have to wash my eyes out and I had no eyelashes which was terrible. I decided to try an experiment, I began to space the medicine out over several days, at first I would take it then skip a day, then 2 days, then 3 etc. I noticed that the day after a skip day I would feel much better. My eyes were better in the morning, my energy level was better etc. Eventually I asked the doctor if there was any protocol for stopping this medicine, I was told I could stop it at any time without issue. So I stopped it, and my skin started to get better, and I started to feel better. At the same time I started to really focus on what I was putting in my body as far as food and beverage. I stopped eating most processed food, but primarily focused on not eating wheat, not gluten mind you, I don't seem to have a gluten intolerance. But I dropped anything that contained wheat, difficult, but doable. I also started to drink black or green tea daily, I also began each day to drink 3 to 4 liters of water with fresh lemon squeezed into the water. If you are not hip to the healing that lemons can bring about in your body, you should definitely do some research. I also eat and drink fermented things, a lot. So kombucha tea, saurkraut, kimche,etc. You see I have come to believe that most if not all chronic medical conditions arise from what we put into our bodies and how these affect our digestive system. It just seems logical, and the fact that as I began to turn my focus to this, I started to get better. I also have noted that when I do cheat, because I do sometimes, everyone does, I may occasionally eat some pizza or some ice cream, I note how my skin reacts to this and it does indeed react. So it is actually quite easy to stay on track, I don't want to return back to that place, and hopefully this helps to not do so. As things stand today, I continue to heal from the horrid condition of PRP. There is really no way to determine if this would have been the course of the disease for me regardless of my efforts to heal myself internally or not. Another area that I do not want to discount is prayers, I have had a lot of folks praying for me about this and I know that God answers prayers, at least in my experience he does.
A few other items of note, I have begun to use cryotherapy several times a week. This seems to be helping. This disease is primarily an inflammatory process, so my thought is that anything that helps to reduce inflammation, which cryo does in spades, is good. The other is exercise. Since I now have regained the normal ability to sweat again, I have started to exercise and this is wonderful. While things are not perfect with the skin yet, I feel that I am on the way to remission, and I certainly feel 1000% better than I did for the majority of 2015, there is still some time left to go. I still have areas of blotchy red on my shoulders, forearms, and deltoids, and my scalp still "snows" some days, this is all very tolerable compared to where I was 6 months ago. May you have peace in your journeys, may you stay positive, and may you heal. Take it easy everyone.  - Sean

Some Informative Links:

Healing Psoriasis Warriors Facebook Group
Healing Psoriasis Warriors

Benefits of Cryotherapy
Cryo Benefits

Benefits of Lemon Water
Benefits of Lemon Water that You Didn't Know About

Sports Cryotherapy of the Woodlands
Sports Cryo of the Woodlands

Same Old Song and Dance

Going into August I have a brief period of time where I start to sweat again, and my body temperature control comes back a little, this is a slight but welcomed improvement. I am still cold most of the time but I do sweat some. My skin is showing some improvement, but it still never really looks the same from day to day. By late August what I had thought to be improvements have stagnated and my September visit to Baylor brings an increase in the dosage of Acitretin up to 50 mg per day. All of the things that this drug can affect, liver function and blood lipid levels have been unchanged for me, all labs look good. As a matter of fact, aside from the odd skin disease that has overtaken my body, my doctor states that she has rarely seen an individual with more perfect blood work. Wonderful I say, please inform my skin of my pristine health at least according to my blood.

My hands go through a continuous cycle of peeling. Over time I realize that this is primarily caused by the medicine.

My left hand.

All appendages have a layer of scaley "bad" skin with areas of normal skin underneath.

My feet are starting to show some signs of improvement. I can walk most days without too much pain. The feet follow the same peeling cycles as my hands do.

Somewhat nicer feet. Improvements?

So all in all I am seeing some things getting better. But improvements with this condition come very, very slowly. Additionally I have not been on the higher dosage of the medicine for very long. The side effects of the medicine will eventually cause me to stop taking it as I will discuss later.

The Chronicles Continue

The disease PRP consists of three words, pityriasis (shedding), rubra (red), pilaris (hair follicle). For me up to this point (mid-July 2015) I noticed 2 of the 3 occurring. Shedding skin, check, by the cupfuls. Rubra, yep red from head to toe. Pilaris, hair follicles, not yet, head or body hair has not seen any affect. Oh, did I mention the itching? Sure I have, there is no itch in the world that compares to the itch of PRP! The non-inclusion of my hair follicles is in the process of changing. Throughout July and into August, I loose body hair, ALL body hair, and I begin to notice that the hair on my head is beginning to thin out. By this time I am totally in awe of what changes are happening to my body and my skin. I continue to freeze the entire day and night in Houston summer heat, my body does not put forth one drop of sweat, I am tired all of the time, and I am quite miserable and sad most days. My skin is never the same day to day, some days it looks better than others but my once normal life has become a train wreck and I am a shell of my formal self. I have returned to work by this time, and I am able to go into the office most days. It takes me at least five minutes of standing in one spot before I can deal with the pain from the cracks in my feet and take my first step of the day. This a mere 2 months from the time that I was running or walking 3-5 miles a session, several times a week and doing essentially anything that I wanted to do from a physical stand-point. I really am not able to tell if what is going on is the process of the condition, or the side effects of the medicine that I am taking, both can be very similar. And the itching continues in earnest, worse at night when you really want to sleep. For the itching at night I take 50 mg of Hydroxyzine, it knocks out the itch as well as knocking me out and most mornings I am no more than a zombie.

Beginning to lose hair all over my body.

These feet hurt so badly. For me aside from the itching the messed up feet are the worst part of the disease.

Is this due to the medicine I take (Acitretin) or is it just the disease running it's course?

I really don't know. All I do know is that these feet are REALLY ugly.

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.