Abatacept update and another diagnosis code!

Lately, I just haven't felt like writing.  Hell, I haven't felt like doing much of anything.  I had a BIG case of that utter exhaustion that pops up every now and then.  Luckily, I got a new PCP that identified the problem....hypothyroidism!  I went in for a physical a few weeks before Christmas and she decided to check my levels.  I'm actually not even sure what prompted her to do it, but I'm glad she did!  Let's look at the symptoms of hypothyroidism, shall we?  According to Mayo Clinic's website, hypothyroidism signs and symptoms may include:

• Fatigue
• Increased sensitivity to cold
• Constipation
• Dry skin
• Unexplained weight gain
• Puffy face
• Hoarseness
• Muscle weakness
• Elevated blood cholesterol level
• Muscle aches, tenderness and stiffness
• Pain, stiffness or swelling in your joints
• Heavier than normal or irregular menstrual periods
• Thinning hair
• Slowed heart rate
• Depression
• Impaired memory

Well, that about sums up every thing I've been feeling.  Hell, if I hadn't already had 2 kidney biopsies confirming my FSGS diagnosis, I'd say it was ALL hypothyroidism.  Sadly, I'm not that lucky, but I AM lucky enough to finally be on some medicine, and I think it's really working.  I mean, it's only 5 days in, but I definitely have more energy, and I can feel the fog lifting from my brain..I'm quicker, wittier (okay, that may be debatable, but I think I'm pretty funny via text messages) and just generally all around happier.  I'll go back in 6 weeks to get my levels checked again, so keep your fingers crossed for me, okay?

Someone anonymous posted a comment on this blog a couple of days ago asking me to update everyone on the abatacept infusions, so that's really what prompted this post.  Whoever you are, thank you for getting me in gear writing again!

Okay, so I've had a total of 3 infusions so far.  I did these on Day 1, Day 15 and Day 30.  From now on, I'll be going to Mayo once per month to do them, assuming the drug works/continues working.

Sometimes I don't feel so well after the infusions.  I do notice some nausea, most noticeably in the mornings.  I have some zofran left over from a hospital stay and I take that, and that's a HUGE help.

Sometimes my face gets really PUFFY.  This picture was taken the same day as my last post was written, and if you read that one, you'll know that it was a REALLY bad day.

I honestly don't know if the drug is working.  My pee is still ridiculously foamy.  That being said, even if I had a 50% reduction in my protein loss, I still lose a shitload of protein, so I probably wouldn't notice a difference anyway.  I'm not going to lose hope, and I'm not going to spend a single second wondering if it's working.  If it does, SUPER!  If it doesn't, then I'm no worse off today than I was before I started taking it, right?

There are a few weird things that are going on, but I don't attribute these to the abatacept at all.  This is just a result of the awful things that FSGS does to my body.  Case in point:

This is my fingernail.  Gross, right?  Yeah, I think so too, and now some of them GROW OUT THIS WAY.  I've got 4 nails right now that are growing out with what appears to be bruises...they look like the kind of bruise you get when you shut your finger in a door, only I haven't done that (I mean, I'd remember THAT!).  I'm blaming this one on the nutritional deficiency that is occurring due to the protein loss.

I also get weird rashes that are unexplainable, incredibly itchy, and totally gone the next day:

This month, I think I'm seeing a total of 4 doctors, if you include my dentist (which I do).  I FINALLY was able to get an appointment scheduled with an orthopedic surgeon to check out my left hip that I had MRI'd at Mayo this past summer.  My hip has been feeling pretty good, but in preparation for the appointment, I started on the elliptical machine again, hoping I can aggravate it enough.  I know this seems counterintuitive, but I've been to so many doctors for things that are bad when I feel good that they don't pay the same level of attention, so I want this thing to HURT so he understands how bad it can be, and how much it affects me.  Initially the doctor looked at the radiology report and told the nurse that nothing needed to be done.  Thankfully, I'm nothing if not persistent, and told them that someone was going to see me because it hurts like hell and I wanted to start running again.  Wish granted :)

Okay, I really hope that captures the last month or so.  My wrist hurts from typing, so I'm outta here :)