Medication is a near requirement for people with
my disease. 10,000 people every year die from it--it simply can't be ignored. It can attack so unexpectedly, violently, and completely that there
has to be a line-up of medicines for at least the hope of keeping it under
control. Lifestyle habits can only do so much to treat the pain that races
through the body. Finding the perfect cocktail however seems impossible for
someone like me. It has been over two years since my diagnosis, and we have yet
to come up with something that eliminates more than 30% of my pain. Three
different pills, three different injections, and various other direct pain
treatments have still left me with few results. I don’t like having to take the
synthetic anti-inflammatory I take now, but if I want to be ale to get out of
bed I don’t really have a choice.
The starting line
up: DMARDs. Disease Modifying Anti-Rheumatic Drugs. Also used to treat cancer.
My first DMARD was methotrexate. It’s just a tiny yellow pill that I took
weekly, gradually increasing the dose up to eight a week. Every four weeks like
clockwork I was in the lab getting blood drawn (I call this “visiting the
vampires”) for tests. One panel to check my inflammation levels, another to
monitor my kidney and liver function. Inflammation was less than desirable, but
my organs were responding with very little concern. After a couple months with
seemingly no improvement, the Doc switched me to the injection. Sub-q it’s
called, and I injected my stomach every week. The hope was that placing the
cell-killing drug straight into the bloodstream would allow my body to absorb
and used it better. Well it did, but not against my disease. While there was
little to no improvement with my disease, the injections did manage to attack
something else. My hair. Every time I would shower a clump of hair would end up
in the drain. And forget brushing it—that was a nightmare! It became thin and damaged,
and so much was falling out that it ended up having a length that spread over 6
inches. In the middle in the back it was scary thin and really short. I had
been growing my hair out for a few years, so my once thick, healthy, long curls
turned into a choppy, wiry mess. It was absolutely heartbreaking, and I knew I
had to get of the medicine. Fortunately my Doc agreed, and since it wasn’t
really helping a whole lot anyways it was time to break out the big guns.
Biologics.
Biologics target
and treat the disease directly by interfering with the immune system response.
If the immune system can’t react properly, it can’t attack my body.
Immunosuppressant’s—all in the form of injection of IV—are a common treatment
for my disease, but can have adverse affects (such as infections). Humira, was
my twice-monthly injection into the stomach or leg. One things to note: it
hurts in two ways. The needle isn’t as small as the previous one I used, so it
hurt piercing the skin. I’m okay with needles fortunately, so I could get past
that. However, the fluid also stung going in to the body. If it wasn’t room
temperature it hurt even worse (Humira is a refrigerated drug). After about
four months, we added another medicine.
Normally a biologic
is used in conjunction with a DMARD because typically they work better
together. The obvious choice would normally be methotrexate, but since I don’t
want to be bald before the age I am even allowed to drink we had to use a
different one. Again, I started Sulfasalazine on a low dose—just one a
day—gradually to be increased with organ monitoring.
At the time of my
second surgery, it was pretty clear that Humira wasn’t doing enough. I was
seeing about 30% improvement, but the Doc was hoping to see at least 80% and
upwards of 100% to knock my disease into remission. I stopped Humira two weeks
before surgery (to allow the immunosuppressant to circulate out of my system)
as a safety precaution, and was given an “in the meantime” drug. Prednisone is
a synthetic but powerful anti-inflammatory. It works extremely well as managing
my inflammation, but long term it can be really bad. For me, it causes insomnia,
water retention and an insatiable appetite leading to weight gain. But when I
didn’t have the Humira in me it was a lifesaver.
After surgery, it
was time for another biologic—Orencia. I have been on it for almost two months,
and again am not seeing a whole lot of improvement. I still am taking the
prednisone because I couldn’t do anything without it. I have gained 10 pounds
on it. I have maintained my weight at a healthy 130 for years, and in a few
months I managed to break 140. I have also moved up to six sulfasalazine a day,
which is not the most pleasant experience in the world. It gives me a terrible
headache, adding more pain to an already pain stricken body. The Doc wants to
give the Orencia another month, but if that doesn’t work I’m not sure what we
will do next. Most likely another biologic—there are at least five we have yet
to try. The only ones left however are IVs, which are very inconvenient while I
am at school. I am hoping that the Orencia will kick in to at least 60% in the
next month so I can stay on this track.
Meanwhile, my
left wrist and right elbow are really concerning to my Doc. They are severely
enflamed even with the prednisone, so she put me on a prednisone burst. For a
few days I was on a dose six times higher than normal, tapering back down to
normal over the course of two weeks. If that doesn’t knock out the inflammation
in the two major joints, I may have to get them injected with cortisone. I had
this done to a knuckle once—it sucked. Painful at the time of injection, but
for the following couple of weeks my knuckle felt amazing. The problem is that
it’s not a permanent treatment, and can only be done a couple times.
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