I started a book last year and though it's no where near finished I realized it's been a while since I've shared my "how I got here" story and we have several newcomers since there. SO the best way to share it is to share the first chapter of my someday book. I have been reticent to post it as I'm one of those perfectionist people who don't like to reveal anything until it meets my standard of perfect, but I'm happy with this chapter so without further ado........
When I was a child I lived in Washington State. The side that everyone thinks is all that Washington State is. The rainy side. No it doesn’t rain every day there, but it rains frequently enough that the lack of the sound of rain is almost disconcerting for a Washingtonian. The lack of sound is a void that makes things feel almost too good to be true. It’s like when you are a child and someone hands you your favorite candy for no reason what so ever after your mom has told you not to eat them. You know it’s probably too good to be true and that something bad will happen, but you’re going to enjoy every bite like it’s your last meal and worry about the why, what’s, and how come’s later. Many people find the constant rain depressing, but I always found it soothing. It was pretty normal even as a moody teenager for me to lay on my bed with my window open just listening to the rain fall. In all the places I’ve lived nowhere seems to have rain that sounds quite like it. England was close, but I was so newly liberated into adulthood it’s possible I wasn’t listening that closely yet for small sounds and notes of home. Texas rain scared me for the first 8 years or so. It’s not usually a drizzle or a mist. It is torrential, angry and violent, and often comes with the threat of tornadoes. Arizona rain is a different kind of aggression. It seems to push the desert into every crevice of your world before it comes through with a force that makes you wonder if you should keep an ark in your back yard. Monsoons are one of nature’s wonders, but still not the soothing lull of Washington rain. In Korea the rain was also called a season. It was also called monsoon. It was like the world was going to end. They have water causeways that sit empty and dirty the rest of the year. These concrete canals are 8 feet tall and nearly as wide. We called them turtle ditches because every weekend some soldier who’d enjoyed too much would be found napping there usually on their back legs in the air like a turtle who was stuck on its’ shell. During the rainy season these ditches will be full or over flowing. The streets become rivers. You finally understand why every building has a tarp on the roof. There is no possible way to totally weatherproof against this level of downpour. As soon as you think you are as waterlogged as you can get it stops. The world smells musty and moldy, but the rain has finally stopped. In Washington the beautiful soothing rain really never stops.
I had a fairly normal childhood I suppose. I thought it was tormented and cruel, but the reality is that most of my friends had divorced parents. They had siblings they had to help take care of, chores they had to do, longed to be with their non-custodial parent more (especially when they reached the terrible teens), and had parents that worked hard to give them whatever little bit they could even if it was second hand clothes or ramen noodles. My childhood was not as angsty as I sometimes remember it. I did seem to constantly cycle through healthy as a horse and having strep throat, but I never broke a bone, was never hospitalized, had no traumatic accidents. Pretty much just a normal American childhood in the 70’s.
None of this is relevant to Psoriatic Arthritis or Psoriasis, but isn’t every author a bit egotistical and wanting people to know them. So there you have it. My life as a child was pretty normal. I married pretty much straight after high school, moved to the UK with my Air Force husband and had 2 children. We divorced shortly after my youngest daughter was born. As a single mother with a high school diploma and retail experience I wasn’t making ends meet so I decided to join the Army to get training that would allow me a career I could care properly for my children. I loved the Army, but I desperately missed my children. However, I had to remember that the sacrifice of being apart from them was done for them so I pushed forward and was the best soldier I could be. Like most things in life I jumped in with both feet and didn’t look back.
This brings us about to where my life changed. Not so drastically at first, but noticeably. I was a good soldier. I was good at my job as a Metrologist. I was pretty darn good at all the required PT tasks of running, sit-ups and pushups. I always qualified on my weapon. I’d say overall I loved the Army and it was a good fit for me. My first permanent duty station was Korea. This was the late 90’s. After the first Iraq invasion but before 9/11. The Army did however deem that we needed to have some extra vaccinations. One of those was the Anthrax vaccine. To say my body didn’t like the Anthrax vaccine is a gross understatement. For 3 days after each shot I’d have severe migraines, vomiting, a bloody nose for hours, and aches and pains like the worst flu you’ve ever had. I’d go to the clinic and they’d tell me I’d be fine, give me a bottle of 800mg Ibuprophen and tell me to stay hydrated. They insisted in no uncertain terms that the Anthrax vaccine was NOT the problem. The second round of shots the same thing happened, and again it couldn’t be the vaccine. Another round of 800mg Ibuprophen and advice to stay hydrated. By the 3rd time they were finally ready to accept there seemed to be a pattern evolving with me and the Anthrax vaccine and I was told not to take any more shots. By this time, I had started developing Psoriasis. The Dr said it was likely genetic, but that the immune response my body had had to the vaccine probably triggered it to start. Within a few more months I had severe bursitis in both hips. There were other aches and pains too, but none was acute enough to be debilitating or necessarily out of the normal in the life of someone who is physically active and plays as hard as they work. The hip bursitis however was debilitating. I couldn’t run and if I did I would often have the hip sliding and grinding in the joint. I could no longer get into the prone position or into a foxhole to qualify on my weapon without the hip sliding around and causing so much inflammation I could barely walk. I don’t know if Psoriatic Arthritis was a recognized condition at this point, but it was called severe bilateral trochanteric bursitis and was decided that surgery was not an option so it was time for me to leave the Army. It took almost 2 more years for that to happen, but in 2000 I was discharged because of hip bursitis in left and right. It was deemed to be Service Connected which for those that are not familiar with the lingo means that the condition was caused or aggravated by military service. At that time my Psoriasis and Migraines were also deemed Service Connected.
Once I got out of the Army I was much kinder on my body as far as physical stress went. I also was newly married and very happy emotionally so life was in one of those quiet before the storm periods. My psoriasis was active, but not aggressive, and as long as I didn’t overdo it or spend too much time on my feet the bursitis was tolerable most days. I had started my relationship with Tigerbalm, heating pads and ice packs at this point, and the dr kept me fully stocked with 800mg Ibuprophen which I ate like candy. I also was supplied with a supply of Vicodin for the really bad days. Other than this I was told to stretch as much as I could and not over strain the hip section. Things held at a pretty constant level until 2004. This is when I probably had my first major flare after the onset flare. In that year I had been fired from my job, moved, started a new job, was going through a divorce, and working a job that often had me working 6 days a week 12 hours a day with a lot of travel. I also had a very active social life and was not so kind to my body both in the way I ate, that I drank too much, and I was physically hard on it. I went to see my GP and she stated I just needed to lose weight and get a normal sleep pattern. I was maybe a size 8 at the time. As to sleep, I don’t think I’d had a normal sleep pattern in my adult life. 4 hours of sleep was a good night, and more often than not I was raring to go after a few hours of sleep. I don’t know if some part of me knew I had things I needed to get done or if it’s just the way I’m wired, but I was on go all the time. I slept with a work cell phone, personal phone, and laptop most nights because I would doze off researching something for work and wake up to a call for work or because I had data to process before actually going into work. I decided that the advice to “just lose weight” probably wasn’t terrible advice. I am a woman after all and we always seem to think we’re fat, but I also didn’t think that was the problem. I went in search of a new GP. The next GP was an Osteopath. I liked that he was open to natural and manipulative medicine. Not just giving me a pill and sending me on my way. I already had all the pills I needed in my opinion and they weren’t doing it so it was time for a new approach. He didn’t really have any answers for me, but did refer me to a Dermatologist because my Psoriasis was progressively getting worse and he’d heard that there were some new therapies being approved by the FDA. He didn’t feel he was the right person to prescribe them so off to the Dermatologist I went.
We discussed the when, why, and how bad my psoriasis was. He asked me if I was having any deep joint pain. It seemed odd that my Dermatologist would be asking about pain, but ok I’ll play. I told him about my hips which had started having problems about the same time the Psoriasis started, and that I often had swelling and seizing of my feet and hands especially in the top knuckles. By this time, I was also having a lot of lower back pain which I had attributed to being in my 30’s and lifting a lot of heavy equipment at work. He said he suspected I had Psoriatic Arthritis and referred me to a Rheumatologist, but in the meantime started me on Methotrexate. I will go into pharmaceutical treatments in more detail later, but basically Methotrexate works by suppressing part of your immune system and hopefully that part is the part that is attacking your body causing Psoriasis and or Psoriatic Arthritis. There was about a 6 month wait to see any of the local Rheumatologists as a new patient so my Dermatologist became my best friend. Methotrexate helped, but not satisfactorily according to my Dermatologist and so he added Enbrel. It was a miracle! I felt amazing. My skin was completely clear of psoriasis in less than 4 weeks, and I didn’t feel like a tin man in the morning anymore. I even started running again. I was a new person! And then the other shoe dropped. During my annual allergy attack I developed pneumonia. No biggy, I had been warned that I could get sick easier while on both Methotrexate and Enbrel. Then I got pneumonia again. The Dermatologist dropped the Methotrexate hoping that the combination was just too much for my immune system. All was wonderful for about 3 months and then pneumonia struck again. It was decided that Enbrel was just too much for my immune system. This was the first time I mourned a medication. It wouldn’t be my last, but it seemed like a death sentence in my over dramatic head. Fortunately, by this time Remicade had been approved by the FDA, and I finally had an appointment with a Rheumatologist. The Rheumatologist took over my treatment unless I needed topical steroids, but at this point my psoriasis was under control and hadn’t resurfaced since stopping Enbrel. The decision was made to put me on Remicade. My Psoriatic Arthritis had come back with a vengeance. It is not uncommon when stopping a treatment course that you will have a rebound flare which seems like your normal Psoriatic Arthritis on steroids, but being this was my first experience I was pretty sure I was going to die curled in the fetal position crying. Remicade was slower to kick in than Enbrel had been. It’s very easy to be discouraged when at the 3 month mark your pain isn’t improving, but my Rheumatologist insisted that since my Psoriasis was under control still the Remicade was doing something and we should wait a bit longer. Soon after the beginning of the 3rd month I started to notice I wasn’t taking quite so long to get out of bed in the morning. My hands weren’t seizing into a claw several times a week. My lower back wasn’t throbbing. Remicade was working! Now I have to mention here that Remicade came with some extra unwanted gifts that weren’t part of the Enbrel package. For 24-48 hours after my infusion I would be exhausted. I would have a full body flare. I would pretty much go straight home from the dr’s office, crawl to my bed, curl up in a ball and cry myself to sleep. Then a few days later I’d feel better and by day 4 or 5 I would feel pretty darn great. It wasn’t as great as Enbrel, but it was great enough that I was happy with how great it was.
This greatness lasted about 3 years. In my mind the 1-2 days of misery was worth the 6 weeks of feeling pretty darn great. I still had the occasional flare which my dr had given me Vicodin and ibuprophen for, and I had enough jars of tigerbalm around the house that I probably should have bought stock in the company, but my good days far outweighed my bad. Then things started changing. I started noticing that I wasn’t feeling so great earlier and earlier in the cycle. I was back to living on ibuprophen, and was needing Vicodin more often. It was decided to increase the frequency of my Remicade infusions. Gradually it was increased till I was taking it every 4 weeks which was as close together as was allowed. This helped for about 6 months and then it was decided to increase the dose. By the end of year 4 I was at max dose, max frequency. I was still having more good than bad days, but my bad days were becoming more frequent. Vicodin wasn’t helping anymore and I asked to switch for 6 months to Percocet as this had worked in the past to trick my system into forgetting the Vicodin and then go back to the lowest dose of Vicodin and it would work again. At this point I’d been on narcotic pain meds for almost 10 years as needed and this had worked to keep me on the lowest dose for all that time. I hate taking them so I only took them when I was desperate, but the nature of the beast is that you build up a tolerance. This also happened to be about the time the FDA started cracking down on narcotic pain meds and my Rheumatologists answer was to up my dose because Percocet was a triple script and Lortab wasn’t (at this point). She did not write triple scripts and that was that. I refused the higher dose and went in search of a new Rheumatologist. This was also when the term Dr shopping started popping up in medical conversations in the public referring to people who would hop from Dr to Dr to get access to pain meds because they were addicted or using them recreationally. I had already heard the stories of people being labeled because they had gotten prescriptions from multiple Dr’s even if they were legitimate such as having a pain condition and then needing a root canal. I knew I was probably going to have a very difficult time finding a new Rheumatologist since my main reason for switching was my current Rheumatologists policy on narcotic prescriptions. I started interviewing Rheumatologists. I made it clear I was not making an appointment for care, but that I wanted to discuss with them their treatment philosophies before committing to switching practices. 3 Dr’s flat out refused to be interviewed before. Either I was going to switch to their practice for care or they didn’t have time to speak with me even if I was paying for their time. The 4th Rheumatologist on the list was the exception to the rule. I would soon come to realize he was the exception to the rule in many wonderful ways. I explained to him what was going on with my current Rheumatologist and what therapies I had been on and was on currently. I told him how my system had reacted to changing narcotic pain meds in the past and that so far doing the sneaky switch and switch back tactic had allowed me to stay on minimum dose with the meds staying effective for almost a decade. I explained that narcotics was not my goal, but the reality was that narcotics had been and probably would be a part of my life for the rest of my life so staying on the lowest dose possible for as long as possible was a priority for me. He was frank with me that he was not well versed in Psoriatic Arthritis, but as it was similar with Rheumatoid Arthritis he felt that if I was patient and willing to do some research myself that between the two of us we could successfully manage my disease if it was possible. He was also open to alternative therapies which I was thrilled with as I had already been researching and was finding all kinds of “cures” among the masses. I knew most of them were likely snake oil, but he was willing to take a look at anything I asked about and give his professional opinion as to whether it was total crap or if it was worth giving a shot. He was also good about telling me that something wasn’t going to hurt me so give it a shot, but inject a bit of reality by saying that he really didn’t think it would help either.
My first year with him I stayed on Remicade. We tried different pain therapies including non narcotic medications used for chronic pain conditions, electro therapy, steroid shots, and massage. We tried adding physical therapy in the form of yoga, pilates and aqua therapy. Remicade was still losing it’s UMPH. After a year with him it was decided that Remicade was a failure. I decided I needed a break from poison so he agreed to give 6 month of holistic and natural therapies a try as long as I agreed to consider another pharmaceutical option if it was not helping at the end of 6 months. I overhauled my diet and cut out most of my processed sugar. I cut out nightshade vegatables, even my beloved jalapenos. I switched to free range and organic everything that I could. I already ate pretty well by this point because I had already realized my lifestyle was going to continue aggravating my disease so in 2007 I had switched to a job that was Monday to Friday from 7ish to 4ish with no travel. I had cut out fast food for the most part. I ate minimal processed foods in general, and was either in the pool or on the elliptical machine 4 times a week and walking the other 3 days. Even with all these changes over the 2 years before stopping Remicade I had steadily gained weight. When I started Remicade I weighed 160. I’m 5 foot 8 inches, but I have always been muscular so even though on the height weight scale I had been overweight (as would be indicated by the previously GP who suggested all my problems were because of my weight), I was a size 8 so not what most people would consider fat let alone obese. By the end of my 5 years on Remicade I had ballooned up to 215 pounds, and that was with all my lifestyle changes that had been in place for the last 2 years of the treatment. With my 6 month probation period of going natural I figured I could tweek my life to make it work. I had to. I didn’t want to be on these biological medications the rest of my life. I’d done the research both on Psoriatic Arthritis and Rheumatoid Arthritis so LOGICALLY I knew I was blowing smoke up my own ass. These are life long degenerative diseases without a cure. The only things known to slow them down at this time are DMARDs (Disease-modifying antirheumatic drugs) like Methotrexate and biologicals like Enbrel and Remicade. I wanted to live in my own little fantasy land for a while and I was going to make myself better with nature.
I had my first appointment in this natural period about 2 months after stopping Remicade. I expected the misery I was in because I had already had the rebound flare with Enbrel. I asked for a steroid shot and discussed supplements I’d researched. The Rheumatologist referred me to a dietician to be sure I was getting the proper diet, but remarked that I’d lost quite a bit of weight in that 2 months. I was down 20 lbs. I didn’t own a scale and though my pants were all falling off I had no idea that I had lost so much weight. That first year I lost another 15 lbs and sat at about 175 for a long time. Needless to say it was decided that natural just wasn’t going to cut it. After a pretty much full body xray it was pointed out that almost every joint in my body had developed arthritis that hadn’t been present at the previous round of xrays that had been done about 2 years previously. I was also starting to miss more work because of the Psoriatic Arthritis, and my Psoriasis was at the worst it had ever been. I agreed to try DMARDs as I had only tried Methotrexate and Cyclosporine at this point. He put me back on Methotrexate as it had been helpful before. BIG mistake. My body the oh great cantankerous one had spent the last 5 years building an allergy to it. I went through several months of trying other DMARDs none of which had much effect if any and my condition was continuing to decline. I was only working about half time and it was decided it was time to think about trying Biologicals again. It happened to be just about my 41st birthday.
I had my annual physical the week after my birthday as I always did, and this year I was due to have boosters of several vaccines. So on September 24th, 2012 I left work at lunch and went to my GP’s office for my physical. Besides my Psoriatic Disease I was declared healthy for my age, and just before leaving she gave me the TDAP vaccine booster. Up to this point in my life I had not had any adverse reactions to vaccines except the Anthrax vaccine so it didn’t seem like something to be concerned about. Just business as usual in our modern world. Within a half hour I started realizing something was not right. It wasn’t blaringly obvious, but I definitely wasn’t feeling my normal crappy. I figured it was the minor side effects that often come with vaccines, the achy, fluish type feeling, with a low grade fever(not uncommon for me anyway), and headache. I went to bed and figured it would probably pass while I slept. The next morning I woke up and felt like every joint in my body had been pummeled with a sledge hammer while I slept. If I hadn’t had to pee I wouldn’t have left my bed. I had to basically slide out of my bed and slowly crawl to the bathroom because putting weight on my legs was excruciating. The mildly irritating headache had turned into a full blown migraine, and I now had a fever of 102. I took muscle relaxers, narcotic pain meds, and ibuprophen and went back to bed. When things hadn’t improved by lunch I called the GP and it was decided that I was having a rather severe reaction to the TDAP vaccine. The flare I was already in was ramped up to a major flare. I never went back to work.
Between October and January I had hoped one of the biologicals I hadn’t tried yet would stop the flare and that I could return to work. Even if work was all I did at least I could be a contributing member of society. I was put on Lefludimide and started on Humira. Within the first month I developed hives and such severe mouth sours that it felt like I was gargling glass. Then I did Simponi. This caused pustular Psoriasis on my hands and feet. I couldn’t wear shoes most days because any pressure on the bottom of my feet was like walking on needles. I went to Arizona to visit family for Christmas because in the past the climate there usually helped me a lot. A month in Arizona did help some, but not enough. When I returned home I decided it was time to discuss applying for disability. My Rheumatologist agreed it was time so I applied. I won’t go into the minutia of the process, but I was one of the lucky ones who was approved almost immediately. I received my letter of approval and my first check in March. Also during this process since starting Lefludimide I had lost another 20 lbs. This didn’t seem that significant at the time, but it will come into play later.
In May of that year I moved to Arizona to live near family, and because the climate is so much more stable here most of the year. I am one of the barometrically sensitive people who can feel a storm coming from a state away. I had to wait 6 months to get into the Veteran’s Hospital system here and several more months to get into the Rheumatology department. This left me only treated with Lefludimide for about another year. Nothing else had been approved anyway so I didn’t have anything else to try at this point. During my wait to get an appointment the FDA approved both Cimzia and Stelara. It was eventually decided that I would try Cimzia first and if that was unsuccessful I could apply to get the pharmacy to approve Stelara. By this time I had been off biologicals for almost 3 years and had maintained a weight of around 155 for 2 of it. My diet had been pretty much the same for the last 5 years and if anything my activity levels had declined a lot. I got my first loading dose of Cimzia and within 3 days I gained over 15 lbs. My joints were so enflamed with fluid it was visible through my clothing. Having had some odd side effects in the past I told my Rheum I’d wait it out and see if it would settle down over some time as my body adjusted and went on to take the next dose. This dose brought on another 10 lbs and full body hives. Yet again my body in it’s wonderful cantankerous chemistry has decided it did not want anything to do with Cimzia. It was decided to call it a failure due to allergy and it was time to apply for Stelara. There was great hope that Stelara might be just the ticket I needed as it suppressed a different immune protein from all the other biologicals I had tried to that point. It took about 3 months to get it approved and I had lost about 15 lbs of the Cimzia weight. I went into the office, got my shot, and the nausea hit before I even got home. I had had severe nausea with other meds so this seemed like a cake walk. I went home and laid down. I woke up the next morning pretty unchanged from before the shot except I was EXTREMELY fatigued. I needed a 2 hour nap for every hour I was awake. This lasted for the better part of a month. Then I started noticing my skin improving, my energy improving, and I wasn’t as stiff in the morning. I had that glimmer of hope that happens when a biological is starting to work. I also started slowly gaining weight again. It wasn’t the rapid increase that had happened with Cimzia. Just a few pounds a month that I was able to push aside the first few months as normal fluctuation. The improvement lasted about a month and then I started feeling worse again. It was decided to give it a few cycles to see if my body would improve with a buildup of Stelara in my system. The 2nd cycle was pretty much the same as the first. The 3rd I felt improved. Then the 4th cycle came and I just didn’t seem to be improving after the first month like I had in the previous 3 cycles. My last Stelara shot was in June and in August it was declared a failure and I stopped Lefludimide as well. By June I had gotten up to 190 lbs. My Rheumatologist conceded that I seem to have a weight issue related to biologicals. It is now November and nothing has changed in my life except for stopping biologicals and DMARDs and I am down to 170. I don’t care what the research says some of us are going to have weight gain with many biologicals. This pretty much brings us to today. My next appointment with my Rheumatologist is in January and I will need to decide if I will be trying my final option of Otezla then.
So now you know my story. How I got to the point I am at, why I feel it is my responsibility to be an educated patient, and why I feel I need to share what I know with others who are facing the same disease I am. In future chapters I will discuss FDA approved treatments in the US. What they do, how they are taken and how frequently, what the potential side effects are. I will discuss diet. With this I will say that I am not someone who believes that diet can cure you. Whether you are food sensitive or not it is always advisable to eat a healthy diet, but there are many dietary things you may want to try to see if they do improve your symptoms. Again this is NOT a cure. There is no cure for Psoriasis or Psoriatic Arthritis at this time. I will discuss activity/exercise and coping mechanisms. It has been a long journey to this point and I often felt like my disease was the red headed step child of immune diseases. Most of you will have Rheumatologists who are not specialists in Psoriatic Disease so I hope what I put in this book will help you to be an educated patient who can work with your specialists to develop the best care plan for you.
Finally I don’t profess to be a medical specialist of any kind. My purpose of writing this is to help point fellow Psoriatics in the direction of information so that they can begin an educated and informed dialog with their Physicians. Always discuss your care plan and options with your doctors and specialists. You will always be your own strongest advocate.