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.
No comments:
Post a Comment