My antibodies are raging war here...

Yes, it’s true. My antibodies aren't a fan of me.

So the last you heard of the medical saga was that I was going to get a CT done for the stomach pain. I got that done and it was all clear. Good news, but still begs the question - where is this pain coming from?

Another trip to the Rheumo doc (that’s waaay easier to type than rheumatologist) earned a “we’re missing something. Something else is going on”. So he started brainstorming. And I mentioned getting a second opinion (I’ve been doing some research on my own), and he heartily agreed because I think he’s at the end of his options with me. So he sent me to an infectious diseases doctor.

Why infectious diseases? It was actually a brilliant piece of his thinking outside the box in my opinion. I travel a lot. We just suppressed my immune system even more about 8 weeks ago, which was when I started having more (and new) symptoms. So maybe I had picked up something during my travels that was dormant or that whatever semblance I have of an immune system was able to fight in the background, but now that I am uber immunosuppressed, my body was like “yeah right, have at it”. I went to this really awesome doctor at St. Luke’s and he asked a TON of questions and then looked at me and said “I’m pretty sure this is not infectious. But because you do have a couple of “flags”, I am going to do some basic tests/cultures. If they turn up negative, we’re not putting you through the meat grinder”. So I was chest-xrayed and had about half of the blood in my body drained (yes, that’s an exaggeration, but it was a LOT of vials!). And everything was negative. Yay, I am not infectious. :)

Meanwhile, my symptoms keep worsening. Major issues with fever and swollen joints (as in hip and SI joints so inflamed that I have trouble walking in the evening). And I hurt. All the time. My wrists, fingers, ankles, toes, hips, and shoulders are the worse, and even the connective tissue between my ribs and my jaw is not happy. I was pretty miserable in the evenings during this past weekend in AZ, so I called my Rheumo doc on Monday and he worked me in yesterday.

We started the paperwork to send me to the Mayo Clinic in Rochester, MN (they specialize in rheumo-stuff). We had talked about doing this at my last appointment if the ID doc couldn’t find something. And he also mentioned some awesome rheumo docs at the UT rheumo clinic (in Houston)– so I’ve got an appointment in May with them, and hopefully they can work me in sooner. And then we talked other medication options.

In hopes of tiding me over until I can get a second opinion at UT or Mayo, we’ve drastically increased the dosages on both my immuno-suppressive drugs. So if I was uber immuno-suppressed before, call me uberificially immunosuppressed now. We’re also looking at using some biological medications that will kill my B cells – B cells produce antibodies and my antibodies attack me. Autoimmune diseases can be caused by overactive/dysfunctional B cell production (B cells come from white cell lymphocytes ). He’s starting the process of getting me approved for one of them –it’s not a common med to treat Sjogren’s, but it has been done before for patients who are “not responding to aggressive therapy” (that would be me). It’s ridiculously expensive and difficult to get a hold of, so there is a lot of insurance hoopla to go through. Thankfully, there was no more talk of the scary new lupus drug he had mentioned earlier. I have done some additional research and refuse to go on it, but looks like it’s off the table. Thankful about that!

So there we go – future consultations at the UT Autoimmune and Rheumatology Clinic and the Mayo Clinic in work. Uberificially immuno-suppressed. And my antibodies don't like me :).

So thankful that my rheumo doc doesn’t have ego issues about me getting a second opinion – not that it would have stopped me, but it makes it less stressful. And I am thankful that even though I am hurting and am uncomfortable, God gives me the grace to still get work done and spend time with friends and family.