a while. Mainly because my health hasn’t been the center of everything. It’s so
easy to write when things aren’t going well. It’s harder to write when they
last two years, I bought a house and got married. And of course, lupus and
rheumatoid arthritis have been there and figured in. We bought a ranch because
I didn’t want to be forced to navigate stairs if my health declines. A lot of
what went in to planning our wedding was done with chronic illness in mind. But
even so, those events were at the center.
to circumstances beyond my control, my health is front and center again.
Several months ago, I found out that Quinacrine was no longer available – more
about that in another post. As a result of this, my rheumatologist suggested
that I go back on Plaquenil. I had been on it before, with my previous
rheumatologist, with little success. I told my current doctor that, and he
wasn’t convinced. Even when I told him that I had been taken off of it due to
elevated liver enzymes, he told me that was incredibly rare with Plaquenil.
played the game. I started taking Plaquenil again, just to prove a point. And
prove a point, I did. Pretty much every side effect that comes with Plaquenil,
I had. I had headaches, extreme nausea, and severe itching. I switched to
taking the medication at night instead of the morning and that helped with the
headaches and nausea, but I continued to have extreme itching all over my body.
told my doctor my symptoms, he told me that I must have an intolerance to
Plaquenil and that I should stop taking it. He didn’t offer any other options.
Well, other than telling me that I could make a killing if I could find a way
to manufacture Quinacrine myself.
this situation, I feel like nothing has changed in the 12 years that I have
been sick. Because of my “overlap syndrome” of lupus and RA, many treatments
aren’t an option for me. Methotrexate didn’t work and caused elevated liver
enzymes and low white blood cell count. Cellcept and Tacrolimus were no good
either, for various reasons. Humira caused me to go into the worst lupus flare
I’ve ever experienced and so that means that typical biologics for RA are
basically off the table for me.
now, I’m on Imuran and that’s basically it, at least until I want to get
pregnant. And then the jury is out because my rheumatologist and gynecologist
disagree on whether I can remain on Imuran during pregnancy. More than likely,
I’ll have to give it up, too.
where will I be? The ultimate test. How will I be on nothing at all? Will I be
able to function?
now, I don’t feel great. My labs don’t look great. It all feels like a
crapshoot. There are no clear answers or easy decisions. There’s just better or
rheumatologist used to measure progress based on whether I was having more good
days than bad days. For most of the time I saw him, I was having more bad days
than good. But things got better. And I’ve maintained that. Going off of
Quinacrine and back on Plaquenil changed things. Suddenly, I was having more
bad days than good.
now, I wait. Wait for solutions and treatments that don’t exist, wait until the
answers become clear to me.
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