Back to square one?

It might just be back to square one. With respect to treating my disease that is.

I started flaring again last week and just happened to have my standard every 3 month rheumatologist appointment scheduled for today, so the timing worked out well. I hate when I make my rheumatologist get a sad face- he just sits there and listens to me list off my physical complaints and his brow gets more furrowed and the corners of his mouth turn down more. Just not fun. I appreciate how dedicated he is to getting me feeling better and that he really listens to me.

As you loyal blog readers know, my disease has been really unstable the past two years. I’ve been flaring more than I have been in remission. My doctor and I finally said the words I was loathe to hear at today’s appointment -“the meds aren’t working, we need to try something new."

A new drug was just approved last March for the treatment of Lupus - which I don’t officially have, although I have a ton of symptoms of it. That’s the tricky part about autoimmune diseases - there is so much overlap of symptoms that it can be very hard to figure out the exact name of your disease (for instance, for about 4 years, my diagnosis was Mixed Connective Tissue Disease - then I presented much more solid symptoms of Sjogren’s and Raynaud’s - so it changed to that - but lately I have been presenting lupus and other autouimmune disease symptoms - so it’s a constantly changing beast). This new drug sounds really scary. I should be used to scary drugs, considering the cocktail I take now, so for me to say it sounds scary, well, you get what I mean.

If we did decide to go with this new drug, I wouldn’t start until the summer because of the trips I have scheduled. I am willing to wait until after the trips because I am not horribly uncomfortable or incapacitated. And I really want to go on these trips. The side effects of the medication and how it has to be administered (via IV) would prevent me from traveling to remote locations until we see how my body reacts to it. And I get the feeling that my doctor wants to mull it over a bit longer too, so we aren't rushing into anything at this time. They took a TON of blood today and we are still trying to figure out why a year and a half ago my body stopped responding to the steroidal treatments that we were using to stop the flares. I’m thankful for the time to think this over and also look at other options and possibly get a second opinion, as much as I trust my current doc.

So for now, I maintain the usual medicine cocktail and we added a low dose of prednisone (steroids) to help as an appetite stimulant (since we're pretty sure the steroids won't do anything with the inflammation due to my apparent immunity) - let's just say I've lost a decent amount of weight over the past few months and I don't want to end up looking like Skeletor :eww:

So here's to this flare being short lived. And I would greatly appreciate prayers for wisdom for me and my doctor on what to do next. Also, can I just say how thankful I am to live in an age where we have these medicines to help keep us feeling well? Read in a Melissa voice: "I am thankful" :)