Every prescription that I have had filled over the past four
years has always been accompanied by a drug information sheet. Truthfully most
of those sheets of paper have received nothing more than a quick glance before
hitting the recycling bin. The side effects listed would almost always be so
generic or vague that it seemed as anything could constitute a side effect and
when rare side effects were listed I quickly dismissed them as
never-going-to-happen-to-me territory.
So when I awoke that morning in late March just not feeling
right I never thought I was about to walk the road of a rare, and possibly
deadly, drug reaction.
Really the only physical symptom I had that morning was a
very tender and very swollen lymph node on the left side of my neck. Since cold
and flu season had already hit me with two cases of bronchitis and four cases
of strep throat I decided to give myself a day in bed in hopes that rest would
stop whatever infection was brewing. However, at 3:00 that afternoon my hands
became a red, itchy, inflamed mess.
I knew I was on a medication that carried a warning about
rare and serious skin rashes - exactly, how I came to be on this medication is
a long and frustrating chain of events that I will save for another post.
Regardless, my Google-medical-degree left me feeling pretty confident that
whatever was happening to my hands was not the same rash that the doctors and
pharmacists had been warning me about.
My husband was not as confident in my self-diagnosis capabilities
and so off he dragged me to the after-hours clinic. By luck I got to see my
family doctor and she agreed with my self-diagnosis - that it was not
Steven-Johnsons Syndrome. Most likely the swollen lymph node and the rash were
not related. I left her office with an antibiotic prescription for the lymph
node and Benadryl for the rash.
However, by lunchtime the next day the rash had spread up my
arms and I was losing confidence in my Google-degree; and finally I broke down
and drove to the hospital. Now I’m going to give the ER doctor points for
honesty, even if she did not fill me with confidence, when she said, “It’s not
Steven-Johnsons, but you are allergic to something, but what exactly I have no
idea and this town is the last place you want to get sick.”
Out of curiosity what exactly is the proper response to a statement like that one?
By the next morning the rash had spread considerably and my
hands now appeared as though they were about to start peeling. One reason that
Steven-Johnsons Syndrome (SJS) is life threatening is because the rash develops
into blisters that eventually erupt resulting in possible infection and
complications. When I saw my family doctor that morning she began to feel as
though we were in fact dealing with SJS. But, when she consulted with the
dermatologist in the city he felt that SJS was unlikely since I had no blistering
in my mouth, eyes or nose and that it was unnecessary for me to see him.
During this time, my psychiatrist, whom is back in BC, had
called to see how I am doing. She was not confortable with the specialist
diagnosing me sight-unseen and pressed me to drive to the city and have a
dermatologist actually see me so that she could adjust my medications
accordingly.
As a patient I really hate decisions like this one. I have
one specialist telling me not to go, another specialist telling me to go and a
family doctor who, “off the record”, is saying go. In this case the majority
coupled with my own anxiety won and me, the hubby and two kids headed into the
city.
Once we got to the hospital I was treated to a seven-hour
wait. Needless to say, my chart landed in the “we really don’t think you need
to be here pile”.
After finally making it out of the waiting area and through
those mystical doors that lead to actual nurses and doctors I got my head bit
off by a nurse who was having one bad day (I think I am most likely being
generous by assuming it was just a bad day!). As I began to explain the chain
of events that had led to me into being in her presence she stopped me mid-sentence
to ask, what the he** I was doing there if I was already on corticosteroids
from my last ER visit and then went on to tell me that this rash had nothing to
do with any of my medications because nothing was recently added and then
proceeded to tell me that this was an emergency room and that this did not
constitute an emergency.
By the time she finished her rant the exhaustion, itchiness,
burning and anxiety got the better of me and the tears started streaming down
my face. I did, however, get the last word as I explained to her that it is very
well known that SJS has a delayed reaction time in the vicinity of two to
eight weeks – to which she had nothing to say, but she slammed her clipboard
down on the counter and stormed off.
To make things even better the doctor was suffering from the
same bad day as the nurse. He too felt that I had no reason to be at the
hospital, that I was stupid to have a specialist in another province (at which
I responded that so far I haven’t exactly been wowed by the doctors of this
province … I know should have said nothing, but at least I didn’t threaten to
wash his mouth out with soap for saying stupid) and that there was no way he
was calling in dermatology at 11:00 at night for a rash. When I pushed him to
guarantee me without a doubt that this was not the beginning stages of SJS he
was unwilling to commit and thus called dermatology and set me up a time to
return to the hospital the next day.
In the end it felt like a wasted ten hours, but at least I
was getting what I wanted the next day.
Overnight things went from bad to worse. I was unable to
sleep and spent the night in the hotel room sitting on the floor rubbing my
back against the bed in an attempt to deal with the overpowering urge to
scratch my skin off.
At 12:00, when we returned to the hospital, I felt as though
death was on my doorstep. I will say that if I was indeed going to die it would
happen in the presence of some of the best nurses and doctors I have ever met –
a much-appreciated treat after the previous nights fiasco.
When the dermatologist – the same one who 24-hours before
said he didn’t want to see me – finally came into the room I think he was as
shocked by the state I was in as I was by how friendly and caring he was. I was
fully prepared to meet a miserable man who was ticked that his Saturday
afternoon was interrupted. He ended up being incredibly thorough and took the
time to explain all possibilities and treatments to my husband and I. He eventually
took two biopsies of the rash that - in two weeks time – would help them with a
diagnosis.
The blood work came back relatively normal and I was
discharged on the condition that we would stay another night in the city and
return to the hospital the next morning for blood work and observation if necessary.
Our hopes for a quick stop at the hospital were dashed when
I woke up and the rash had once again worsened, there were two large lumps at
the back of my head and I was having abdominal pain. So back into the ER we
went and the four of us once again crowded into a room.
This time the blood work came back showing that my liver
function tests were three times above the upper limit of normal and the eosinophil
count in my blood was also high – which meant that a new diagnosis was
being put on the table: DRESS Syndrome - Drug Reaction (or Rash) with Eosinophilia and Systemic Symptoms.
There was now a
constant parade of specialists entering the room questioning and poking and
tapping me for a good part of the day – and since each attending doctor comes
with a resident attached to them I was getting a double dose of medical care!
Once all the questioning,
poking and tapping was complete the specialists gathered together to debate
whether they were dealing with SJS or DRESS. The conclusion of this roundtable
discussion was that most likely this was DRESS Syndrome – however, until the
biopsy results came back it wouldn’t be definitive. The treatment plan
consisted of stopping the suspected drug (Lamotrigine), hospitalization,
continual IV fluids since the lesions were stealing most of my fluids, daily
blood work to monitor my liver and blood counts, a high dose of the
corticosteroid Prednisone that would be tapered down over fifteen week period
and topical steroids for the rash.
Thankfully I could
be hospitalized back home; which allowed my husband and kids to get back to
their lives or at least get them out of a hospital room.
I ended up
being in the hospital for a period of five days during which my liver function
tests peaked at eleven times the upper limit of normal before beginning a slow
decent back down to normal levels three weeks later, the eosinophil count also peaked around day three
of hospitalization and then slowly returned to normal.
During my stay, I did manage to get an ambulance ride back to the city to see the attending dermatologist
because of the severe liver involvement. His verdict was that it was still
DRESS Syndrome, despite the fact that the biopsies came back with a finding
that was atypical for DRESS. So much for the biopsies being the definitive
piece of the puzzle!
I also got to
experience the tactless bedside manner of this dermatologist when he began to
tell me all the “wonderful” side effects that come with Prednisone. The first being
that I could expect to get fat – very fat - while on the medication especially
considering the high dose and the length of time I would be on it. Since there
is no alternative to Prednisone I am not sure why he would feel compelled to
tell me this side effect first.
He also informed me that I would be at an increased risk of
infection, osteoporosis, diabetes, thyroid disease, irregular heat rate, glaucoma,
stomach ulcers, insomnia, crabbiness, anxiety, depression, psychosis, lethargy
and even heartburn and acne. And if that list was not long enough he continued
to share that some side effects would not show up for months or even years
after the Prednisone was stopped. Therefore, I would need to be tested for
thyroid disease, diabetes and autoimmune diseases every six months. I left that appointment thinking that the
treatment seemed more punishing than the actual syndrome – obviously I have a
pretty short memory because full-blown DRESS Syndrome felt pretty stinking
horrible just one week earlier.
Since being home I have definitely been feeling the side
effects of the Prednisone. I do praise God that the big ones – diabetes,
thyroid issues, glaucoma, ulcers, osteoporosis and psychosis – have so far
skipped over me and we are praying that that continues to be the case. However,
I have already had to deal with several infections since Prednisone suppresses
the immune system. Also, issues like a racing heart rate, stiffening foot
joints and trembling hands have me constantly wondering if it is a Prednisone
side effect or something else – and wondering is never good for anxiety! The
insomnia is giving this exhausted body no good rest; which only makes the
exhaustion, lethargy, crabbiness, anxiety and depression worse. That feeling of
always feeling exhausted is exasperated by the fact that my white blood cell
count has remained high throughout this whole ordeal. And then things like acne, sensitive teeth
and heartburn are both painful and downright annoying.
But, somehow – mainly by eating nothing but lettuce between
8am and 5pm - I have managed to avoid the huge weight gain that was at the top
of the list for the dermatologist. Prednisone supposedly makes body fat
relocate to areas such as the stomach, chest and face; which I have begun to
notice, but for the most part the scale has stayed exactly where it was when
all this began. It is one more week until I follow-up with that dermatologist
and I’m praying that the scale doesn’t budge just so I can stick my tongue out
at him!
If everything goes well I have nine more weeks of Prednisone
left. DRESS does have a tendency to relapse, as the Prednisone is slowly
tapered, and if that happens it will be longer than nine weeks.
But regardless of how long I’m on this drug my heart
continues to thank God for His goodness. I thank Him for his voice that told me
to get in the car and get to the city. Had we stayed in town I know that the
culprit drug would have continued to be dismissed and everything could have
been a lot worse. I thank Him for the grace that the kids were not in the
hospital room with me the night I had to deal with the insensitive doctor and
nurse; and yet both days that they were in the room with me we were blessed
with the most incredible medical teams. I thank Him that those liver and blood
numbers increased when they did; thus granting us access to all the different specialists
at one time, thus making it possible for a diagnosis and treatment plan to be
put together that very day. I thank Him for showing my little boy the power of
prayer by bringing down those liver numbers the night after he prayed so hard
for me to get better. I thank Him that
the side effects I am experiencing are not life altering and should cease when
the medication is finished. I thank Him that after six weeks only minor
blotchiness remains from the rash that once covered almost my entire body. I
thank Him that I was not one of the ten percent of people who die from this
drug reaction and that I get to still shower love upon those three hearts that
stood at my hospital bedside for two days straight.
O LORD my
God, I called to you for help and you healed me. – Psalm 30:2
