The first chapter of my someday book.... My journey to here.

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 3^rd 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 3^rd 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 4^th 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 41^st 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 24^th, 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 2^nd cycle was pretty much the same as the first.  The 3^rd I felt improved.  Then the 4^th 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.

When side effects are too much.... Otezla update

I have put off writing this blog for one I wanted to be in my right mind and secondly my hands have been really painful for weeks.

About a month ago I reached a point that my sanity was more important than my arthritis.  Otezla was making some progress on both my skin and my arthritis, but my psychological state was not good.  I didn't have the depression many people have as a side effect, I have been there before and this was not it.  I had something for me that is much worse.  I was in a constant state of angry.  My fight or flight response was in constant fight even when it didn't need to be.  I was choosing to isolate myself because I was becoming concerned that I would act on my violent thoughts.  My family and friends had noticed my change in behavior so it wasn't just me feeling things were worse than they were.  I was in a very scary place for me.  After discussing this with my Rheumatologist along with other side effect issues like migraines, nausea, stool extremes of either severe constipation of severe diarrhea it was decided to try a different route so to speak.  Because it was working on my disease it we didn't want to abandon it completely so I was dropped to 1 dose a day.  My psychological side effects lessened noticeably in less than a week, but my Psoriasis and PsA returned with a vengeance as it's known to do when I screw with whatever cocktail I'm on.  Lefludimide has been added back into the mix and today was the first day since the change that I have felt my pain levels had improved, and I have noticed this week that my Psoriasis is improving so there is a glimmer of hope that the combo of half strength Otezla with Lefludimide will be a working combo for me without the extreme side effects.

I have often had adverse reactions to both biologicals and DMARDs.  In fact the Rheum said that she got a warning when prescribing the Lefludimide that I have had adverse reactions to similar medications.  Even with Remicade which I was on for about 5 years there were side effects, but for me the payment was worth the benefit.  The side effect/benefit ratio is something that is very personal for each person.  I may be willing to put up with more than someone else because I just don't have many options left to me, but no matter what the whole game is about quality of life.  If you aren't achieving a better quality of life what is the point?  That being said I feel it is responsible of me to mention that we must be realists in our optimism.  I know I will never be what I once was even if I achieve clinical remission.  I have too much permanent damage.  That is a reality.  I can hope for a lower constant level of pain.  A level I can function with most the time.  A level that I can sleep with.  Expecting the impossible is not going to improve your quality of life just like giving up and letting the disease run rampant won't.

I will keep this brief as even with my hands feeling better they are still pretty stiff and easily agitated.  I hope this finds everyone out of flare, and if you are in flare that you find some way to ease your pain.

~H

New Meds so Now What?!?

As those of you who follow the Facebook page know I started Otezla about a month ago.  I'm not planning on this blog being about that so much as what to expect when we start a new immune suppression therapy whether it be DMARD or Biological.

We all have that dream of the magic medicine whether it be pill, shot or infusion, but the reality of advanced immuno medications is that they take time.  There really is no secret formula for how or when it will start working.  Not just between patients on the same medicine, but each individual patient will have a different time line and complications (and there will likely be a complication or two).

So what should we/I/you expect or watch for when we start a new medication.  We all get the list of terrors when we get the prescription that can strike fear in the most fearless person,  We hear the horror stories, which are generally the minority not the majority, but none the less they are generally the loudest voices.  Those that are happily going on with their life with positive results and minimal or liveable side effects aren't yelling from the rooftops about their experience after the initial euphoria of significant improvement or remission settles in.  It's very easy to step away from the misery that you know is lurking in your body to enjoy the fruits of a working therapy and YOU SHOULD!  My point being that don't let the "War and Peace" length booklet on POTENTIAL side effects get into your head too much.  Yes you need to be aware of what to watch for, but the majority of those side effects are a very small percentage of the population.  And I say this as someone who has a very cantankerous immune system that comes up with side effects not even listed in the documentation.  I am also one of the people who has tried nearly every pharmaceutical that has been approved by the FDA and am usually salivating at the news of a new release because I'm back to having failed everything before the newest and greatest next thing is released.  I will still tempt the immune system gods, try it and pray for the best.

I guess the easiest way to approach this is to go through several common questions I hear on various support groups, from fellow patients, and friends who are newer in the process than I am.  I will apologize because the only commonality is there is very little commonality to almost every question.  That being said there are some ways to hopefully not get too discouraged or anxious while going through the process.

When will it start working?
The answer to this is there is no answer (I warned you).  Whether it is Methotrexate, Enbrel, Remicade, Otezla, Arava or any others in any combination the unfortunate answer is there is no stead fast formula on when you will see results.  My experience is that most specialists will want you on any one med for 4-5 MONTHS before declaring it a failure if you are having no response or continuing to decline.  Now in that time they may decide to supplement with another medication, increase dose or frequency to try and increase efficiency, but as long as you are not having adverse reactions you're likely on it for the long haul.  Now I know this is frustrating, but there is a method to the madness.  We are dealing with a major body system.  Some of us have been fighting this actively for decades and often for many many years it was lurking not diagnosed or unnoticed as well.  These medications are suppressing production of parts of our immune system, but it can take time for a) that suppression to take place and b) the proteins that we have stored in our system to dissipate.  It may also take some time to find the right dosage or combo that works best with your individual chemistry.  My personal observation and experience has been that if a medication is going to have some impact you will usually start seeing or feeling some minor changes in the first 4-6 weeks.  It might not be ground shaking, yell from the rooftops improvements, but you will likely be noticing some changes by then.  It can be exciting and frustrating all in the same breath.  I happen to be an itchy as well as an achy so for me I normally start noticing changes in my psoriasis first.  It may not be significant to anyone else, but I notice it.  I blogged about my Humira experience a few years ago and it was around week 2 or 3 I think that I noticed while on my porch having my morning coffee that the rather bad patch of Psoriasis on my big toe had a beautiful pink completely clear of scales spot right in the middle.  If I could have danced a jig I would have.  It was some glimmer of hope even if it was a minute one by most people's standards.  With Otezla in the last 10 days or so(I'm about a month in) I have noticed that my Psoriasis isn't quite as thick as it has been and I'm getting that new skin pink on the edges and under some of the larger scales.  I also have NO cracking which is HUGE for me especially since we are on the tail end of winter here (No peanut gallery comments about "winter" in Phoenix).  In both cases it is not a guarantee that the medication is going to be enough, but it sure is a sign of life and enough to keep me going without losing complete hope.  Other meds have not been so lucky to have that.  On Simponi I went the full 5 months with not only no improvement, but I also developed Pustular Psoriasis so in my opinion it made me worse at least in the skin department. So the answer to the question is there really is no answer.  There is what seems to be a point where the specialists accept defeat, and there are often small victories along the way before major change is seen, but there is no cookie cutter answer for when it will start working or how that process will take place.

What side effects can I expect?
Wait for it.... It's a surprise!  Yes there are some side effects that seem to be fairly common like with Methotrexate many people experience a level of nausea and some hair loss, but then there are many people who don't.  As I said above there is the novel of horrors you receive with each new medication.  The majority of these listed side effects are there for legal reasons because there was a small percentage of trial participants who experienced it or if the medication has been around a while a small percentage of patients have developed that side effect.  This protects them from being listed in those class action law suit commercials from the ambulance chasers, or at least limits it.  If you spend the time and fight the desire to pass out from boredom you can find actual percentages on most side effects.  It is often listed in the hand out, but if it's not it is on line in most cases without too much deep research.  The reality is if you found 100 people who were the same age with the same disease characteristics and asked them what side effects they experienced with any one medicine you are going to get 100 answers.  Yes there is likely to be some overlap, but rarely will you find 2 people who have identical side effects or results let alone time line for either.  The other quirky thing is that side effects can be sneaky.  Some you may realize quite quickly.  On Otezla, Methotrexate, Remicade, and Sulfasalazine I had nausea almost immediately.  On Remicade and Sulfasalazine it eventually went away, and after some time I didn't even get it when I got my dose.  So far with Otezla it's a near constant with it being much worse in the mornings (no I'm not pregnant).  On Methotrexate it improved for the first few years and then suddenly returned with a vengeance.  On Humira I had no impactful side effects for the first month or so.At around month two I had full body hives including inside my mouth and it felt like I was gargling glass shards.  Cimzia I swelled up like a water ballon and gained almost 20 lbs in the first 2 weeks which was all fluid on my joints.  At the month or so mark I had a site reaction and within 24 hours of my shot I had full body hives. So the presence, lack of, or even increase/decrease of any individual side effect is not a guarantee of anything.  What it boils down to is be aware of your body.  If something is off make a note of it.  You are the only one who can decide if it is worth the price for the improvement you are experiencing or the potential for improvement.  This is often when self advocating is important.  Telling your dr you can't keep your breakfast down often is interpreted as "I have some mild nausea, but lets keep going".  If morning nausea and vomiting is where you draw the line stand firm.  You may be living with this side effect for a long time.  If it is something you can tolerate for a while to see if it improves or the trade off of the positive is worth it than keep an eye on it and keep on keeping on.  One example for me of an acceptable side effect was on Remicade I could pretty much guarantee that 24-48 hours after my infusion I would be exhausted.  I would drive home from the doctor's office, stop somewhere for a large milkshake because that was about all I could tolerate, get home and crawl into the bed and get in the fetal position where I would stay except to crawl to the bathroom to pee.  I was beyond miserable. That being said once that passed I had 4-6 weeks of feeling pretty close to normal.  In my opinion giving up 1 day for 28-40 days of nearly normal life was an acceptable sacrifice.  I scheduled my infusions for Thursday or Friday so I missed as little work as possible, made sure I had prepared meals for my family so I didn't need to worry about cooking, and my family knew that I was going to be useless for that time.  They also knew that after that passed they had their old mom back at least until the next infusion.

Will I get sick more while on Immune Suppressing therapies?
Another solid answer of maybe.  Yes these medications are meant to target certain parts of the immune system, and yes it may make you more susceptible to germs/illness, but then again it may not.  Also keep in mind that similar targeting medicines may not have the same effect on your immune response to illness.  An example is Enbrel, Humira, Remicade, Simponi, and Cimzia are all TNF-Alpha inhibitor targeting medications.  On Enbrel I got pneumonia 3 times in 6 months. On Remicade I would get a sinus infection with allergy season, but I probably would have anyway.  It was just pretty much a given the 5 years I was on it that it was going to be a zpack every 6 months or so.  On Simponi I had no increase in illness.  The others I wasn't on long enough to really say.  Now knowing MY experience I can tell you I know people who run the gammit on any medication you want to ask about.  Some find they catch every illness in a 1000 mile radius of them,  Others could lick the side walk outside a port a potty and be fine(though I wouldn't recommend it).  It is another one of those things you need to be aware of what is going on with your body and keep communication open with your specialist.  If you are finding a particular medication is too much for your immune system do not discount another medication in the same class for that reason.  Yes they target the same components, but if they were all the same we wouldn't have the options we do.  Each medication has different components and ingredients to do that job so each one will have a different impact on your immune system.  You do need to be practicing extra precautions while on any immune suppression therapy.  Avoid sickies as much as possible.  Be extra consistent with hand washing especially when being in public places and during illness cycles in your individual community.  Let people you are close with know you are immune compromised and that as much as you enjoy their company if they are sick they need to not expose you to it if at all possible.  Do not take live vaccines.  Flu shots are not a live vaccine, but the nasal inhaler one is.  So just be sure to ask before hand to be sure you are not putting yourself at risk.  If in doubt call your specialist for confirmation before taking any vaccines.  If you have children in the house teach them good hand washing and habits that minimize the spread of germs such as coughing into their elbow, proper food handling practices, and sneezing into a kleenex.  Really all common sense  things everyone should practice, but being immune suppressed you need to be extra aware of these things for yourself and those around you.

These are probably the most common questions I see and hear from fellow Psoriatics preparing to start a new immune therapy.  The answer to all of them is there really is no answer.  That being said you are the expert on your body.  You need to be aware of what your body is telling you, self advocate if things are not going well, and be realistic in what to expect when doing your own cost/benefit analysis.  Fear the disease not the medication.  Though it may be a long road to finding your magic medication or combo no treatment is the only guarantee you have that you will not get better.  You may never be what you once were, but improving your quality of life and keeping it longer is the goal.  Hopefully some day there will be a cure.  In the meantime the best we can do is do try for improvement and maybe remission through medication, lifestyle modification and self care.  It may be frustrating and terrifying but you are not alone.  Every single one of us who have taken a DMARD or biological has felt exactly how you feel at one time or another or we do now.

Life without Facebook

It's been a few days since I deactivated my Facebook account to focus on NANWRIMO this month.  I will admit the first day was tough.  Especially in first thing in the morning.  We get so numb to how connected we are to our digital online presence that until we aren't plugged in we think it's not so bad.  I knew I was on a lot.  It's my connection to a lot of the outside world.  The way to stay in touch with and part of my friends' lives who live all other the country and world.  How I communicate with the friends I have developed that are in my favorite PsA support group.  How I am notified of events with family, friends and community.  It's basically my contact book, calendar, and communication with anyone important in my life.  Not to say it's the only way, but it's a main one.  I would check it first thing in the morning before I even had coffee/tea in hand.  It didn't dawn on me until after I had deactivated it that it was how I kept track of so many events.  I've had to message several friends to get reminders of when things were happening so I could put it on my appointment calendar.

It'a been 5 days now and it is getting much easier.  Most the time I don't miss it.  Late at night when I would be awake IMing with my other insomniac friends I'm feeling a bit at a loss as to what to do with my time, and since most my games are Facebook attached I don't have those time wasters to occupy my brain when it's not being cooperative for anything else.  But when it's all said and done I'm doing pretty well without it.  December 1st I'll be back on it though.

I am not doing so well already with the whole book writing thing.  The first day of writing and I've been gallivanting around with a friend.  I think I'll work on it some after I post this blog though.  It's only 8 at night so I have 4 hours of the day left to get my shit together.

So off I go to try to get my thoughts in order.  Happy Dia De Los Muertes everyone!  Say a little hi to those you love who have moved on.  Have a great week!!

~H

I'm BACK!!!!!!!

Well I have had a very extended hiatus.  Partly because well life.  The other obstacle has been my computer.  I have a netbook with a condensed keyboard and it was just too much for my wrists and swollen fingers.  It was also having some operating issues so now this has been remedied with a full sized keyboard, 17 inch screen (because I'm fairly sure I'm going blind too), and the keyboard is under-lit with LED lights that change to various colors of the rainbow.  This last feature has it's negative sides as well because I find myself fixated on it when I'm on my pain meds and nothing is going to get done.  I can stare at that thing for HOURS.

So enough with my excuses.  I guess we can do a life update since it's been (ahem) 8 months since I've been blogging.  I have been declared a failure on Stelara almost exactly a year after starting.  The rebound flare was not as bad as some I've had, but it was no fun.  My last shot was in June.  I was already in flare and just never came out of it by the time I'd seen my Rheumatologist in August.  My skin isn't nearly as bad as it has been in the past, but it is slowly but surely degrading.  I've already started getting the winter crack and here in Phoenix it's been in the high 80's (SO not winter weather).  My inflammation however is the real problem.  Sausage toes and fingers  have started to reappear as has the Claw.  My Dentist's assistant saw the Claw when I stopped by to make an appointment.  I also had my cane with me that day, and he was shocked at the decline since I'd seen him 6 months earlier.  I also am having the oh so wonderful wandering mystery pains.  You know the ones.  They just pop up out of no where and you know you didn't run a 10k or lift dead trees in the last few days so there is no reason to feel like elephants have been river dancing on your body. At any rate my body is back to it's old tricks with a vengeance.  It has mellowed a bit this month, but mellowing means it's back to my good ole normal crappy.

My current management program is lots of rest and pain management, but the Rheum has said she would approve Otezla.  I'm a bit hesitant as it's fairly new on the market still, but I have joined an Otezla group on Facebook.  It looks like there are quite a few people on there who either were on the trial or got started on it immediately after it got FDA approval so there is some good historical use information there.  I will probably lurk and learn till around Thanksgiving and email my Dr my decision so there's time to get whatever pre prescription tests done.  It also takes the VA a while to decide to give in and approve the funding for newer drugs.

I'm not sure what direction the blog will go in for the near future.  I get sick of hearing myself whine so I know y'all don't want to hear it.  There's very little medication wise happening in the US right now as everything new is in trials.  I may do some on diet, distraction, and such, but I know we all get that from everyone who has a cousin's uncle's dog sitter's sister's landscaper that magically healed themselves with blah blah blah.  If anyone has requests I'm happy to listen, but can't guarantee I'll follow through.

One thing I do want to let y'all know is that 23 and Me has had the FDA limitations lifted and they are doing medical DNA coding again.  It is very costy, but I'm hoping that they will have a holiday sale because I want to get my parents and kids tested.

So for now I'll say adios.  I hope everyone enjoys their Halloween!!!

~H

Why granny what large teeth you have.....

Once upon a time is the basis of every great story.  It leaves the promise of fulfilled fantasy, the threat of unknown horrors, and the potential for the illusive happy ending.  Most of us were at some point influenced by these fairy tales masked in a bit of violence and despair.  The dream that even when the big bad wolf eats our dear old granny and uses her as a granny suit ala Wild Bill of Silence of the Lambs (I wonder if the wolf insisted on granny putting the lotion on her skin with threats of a hose down), that in the end good and beauty would prevail and the big bad wolf would be slain for the peace of the world at large. 

Living with an immune disease is sometimes like running from the big bad wolf every moment of your life.  The only difference is the illusive slaying of the evil beast is truly a fantasy most of us dream of, but have little realistic hope of ever seeing in our lifetime.  I know many like me follow the medical news in hopes of that silver bullet that will turn our nightmares of drooling snapping jowls and yellow eyes called immune disease into the “normal” person we once were, but without the dreaded result of killing us in the process.

The commonality of fighting immune disease with fighting monsters in stories seems very real to me.  Every new treatment holds so much hope of releasing me from the claws of the monster and freeing me to forever after in blissful normality, but in the same breath I wonder which bullet will be the one that brings my death or further infirmity.  Which one will cause a severe allergic reaction (as many have luckily not fatally), which will be the sea witch’s curse which allows me to walk and dance on land beautiful and whole only to have it wrenched away when the time has expired without my truly bestowing the adequate gift of payment to the witch and not only returns my scales, but plunges me into depths of pain I had happily forgotten existed. 

Currently on Stelara I thank the pharmaceutical white knights every day for the relief I am having even on days when relief is illusive and the white knight somewhat resembles Don Quixote jabbing at leering windmills  because I know, or at least I pray, that the appearance of the dark shadow that is my wolf will again retreat soon.   Yet with every bad day I wonder and fear if this is the time that the beast has won.  The day when my body has finally been overpowered once again by the aggressor within never to emerge somewhat whole and to outer appearances unscathed by the darkness that lurks within.   When will the day come when I return to the waiting game for the next valiant hero to attempt to slay my dragons of pain and disfigurement that lurk in my core through to the coding of my being?  The who I am atomically with its flawed and self-destructive DNA?  When will the dragon really win or is there truly a hope of slaying the beast without being eaten whole in the process?

In the core of my being I do not believe I will ever see a cure for myself, but the true fairy tale for me that holds a glimmer of hope is that the next generation will find the dragon slayer and that my generation will be the cattle fed like sacrifices in the process.  I am at peace with that as long as my children and grandchildren and their children have hope of being able to never live with this torturous existence.  I am a wasted rescue at this point because too much damage has been done, but I am not a wasted life.  I will proudly stand and stare without fear at the beast and let it slowly consume me if it means my failures help provide successes for our future.  Now this doesn’t mean I am lying down and waiting for death.  I will fight kicking and screaming, likely causing myself more damage and pain in the process, prolonging death at the jaws of the monsters as long as I can.  I am not built to surrender.  I am built to fight and claw, make as much noise as I can, cause as much damage to my aggressors as I can and when I go we will both show the scars of our fight.   Accepting I am the sacrifice to progress doesn’t mean I am a lamb.  The best meals are meals well won so come on wolf, dragon, sea witch, come and have a taste and may I leave a bitter taste in your mouth because some day my kind will slay you.  It may not be me, but someday my psoriatic siblings, our offspring and those who fight for and with us will win.  We will have you crumpled at our feet and you will be relegated to the things of fairy tales.  

We will have a happily ever after!

Sometimes it's the little things.

A while a go I was "normal" people sick.  You who have chronic illness/pain know what I mean.  Above and beyond YOUR typical yuk you have a virus/infection/one of those nasty bugs that everyone complains about at some point or another.

I have a picture my daughter took after my last surgery several years ago.  I was on the couch resting and she'd brought me my teddy bear Theo.  This bear is nearly as old as I am and I won't admit to the exact number, but it's over 40.  It has been around the world with me, been with me through 2 births (without drugs), 3 marriages and divorces, every major life moment for most of my 40+ years, and because he's my oldest friend I keep somewhere near by at all times.  At any rate she'd brought me my Theo to comfort me and I dozed off with him curled up in my arms and she took a picture.  I now put this picture as my Facebook profile picture whenever I'm "normal" sick.  Something like hanging a sock on your dorm room door to let your room mate know your "busy", but letting my friends and family know I'm not feeling up to being social and likely passed out like in the picture is my status.

Tonight I'm feeling a bit stressed out for no apparent reason and decided to take a bath.  While in the bath I started thinking about the last time I had this picture posted.  Someone who shouldn't have access to my profile had seen this picture and was publicly making fun of me because of this picture and how it's immature and attention seeking.  Now I really could giving a flying shit about this person's opinion of me, but for some reason sitting in my bath this came to my head.  Not because what this person had to say affected me, but because I wondered at what point do we lose a level of innocence in what soothes us.

I guess after almost 2 decades of dealing with Psoriatic Disease in it's varying degrees of severity, especially the last 4 of extreme decline, that I've learned to see the beauty in the simplicity of innocence and accepting the beauty of it.  When nearly every part of your body hurts and someone rubbing your ear lobes is soothing (and also one of the few places that doesn't hurt) is this infantile because it's how I soothed my child when she was an infant or is it beautiful in it's simplicity that another human can look to find any small way to soothe you when you are in pain?  When you miss your children and your arms ache from their absence is a pet or teddy bear childish or the act of filling a loss, even temporarily, with something that is familiar? Or in the case of my picture when my child is looking for a way to soothe me after surgery by giving me something that soothes her.  All these innocent simple gestures are things I've learned to see as what they are.  Beautiful, tactile, and comforting moments of calm in a world where life is chaotic beyond just the daily grind and typical life stresses.  I for one will take those moments anywhere I can find it.  Sometimes the most simple, innocent action is the action most needed to find that peaceful calm place above the pain, above the worry, above the anger.

I guess the point of my rant after my bath is to remind you all that no matter what anyone thinks of your soothing habits don't let anyone jade or tarnish them with their bile and ignorance.  In truth people who are so wrapped up in their own opinions are truly miserable in themselves so there's no need to use them as a mirror.  Grab your teddy bear(or whatever your totem is) and smile as you let the feeling of calm that the tactile memories of it's soothing you takes over and keep going to your place of peace if even for a few minutes.

As for Theo he has been put away for a few years.  He's safely stored for later emergence once the threat of chewing puppies, attack cats, and children who try to smuggle him away for their own soothing rituals has passed.  I will not disclose his location as my daughters occasionally read this lol.

For now the picture of him cuddled in my arms while I sleep is sometimes enough to bring a smile to my face because during many times of crisis he was my anchor and will always be special to me.