Unexpected Second Opinion

I had a regular appointment with my rheumo doc today. I sat there and, well, cried, and told him awful I felt and he looked at my swollen and purple feet and walked out of the room and made a phone call.

An hour and a half later, I was sitting in the office of another of Houston's top rheumo doc's (mine is on that list too) at the University of Texas Frank C. Arnett Center for Immunobiology and Autoimmunity (it's a mouthful). I wasn't supposed to get in until May 17th and then with one of the newer docs. The doc I was sitting across from is their top guy- like doesn't take new patients kind of guy. We went through my history and he asked a lot of questions and told me a lot about his research (he was one of the first guys to   map out Sjogren antibodies). An hour and a half later (seriously, what an awesome doctor to spend that much time with one patient!) he looks at me and says "well, it's more than Sjogren's". This didn't make me roll my eyes like you might think, I mean sure, part of me wanted to say "um, DUH", but the other part was very relieved that it was looking like he was thinking along the same lines as My Rheumo Doc. And he was. He started walking me through his thought process.

See, the tricky thing is, my official diagnosis is Sjogren's Syndrome with secondary Reynaud's disease. But the symptoms that are causing me the most problems aren't Sjogren's, they are lupus and other autoimmune disease symptoms. The medications I am on treat all of these diseases, but they aren't working for me. The other medication options available are only approved for lupus or R.A.

New Rheumo Doc says the following "you either have Sjogren's PLUS something else that hasn't presented enough for us to diagnosis or you have, what I really think is,  Undifferentiated Connective Tissue Disease (UCTD)/clinical lupus (this means I have the symptoms, but not the lupus antibodies) and secondary Sjogren's, if we had to put a name to it. Changing the name doesn't change how we tackle the problem, but it does change the options available to us." I was actually first diagnosed with UCTD when I first had problems (they called it Mixed Connective Tissue Disease back then, that term isn't used anymore to describe the things I have wrong with me), and then my Sjogren's antibodies became so prominent that they officially changed it to Sjogren's.

So, anyhow, enough with the complicated disease names. The forward plan is more blood work tomorrow and a lip biopsy in the next week or two. Apparently, the lip is the best resource for determining your body's inflammation levels. So if I look like I got collagen injections in my lip in the next week, I assure you, I didn't :). Whether or not the biopsy is positive doesn't really change things, but if it is positive, it just gives more rationale for why I need to be on the new meds.

After that, we'll talk medication options. New Rhemuo Doc  (referred to as "NRD" below - yes, I work at NASA and I like acronyms) and I had a very lively conversation about medications. Something like this:

Me: My Rheumo Doc and I talked about Rituximab.
NRD: Yes, that's a good option, I was also thinking about Belimumab.
Me: That's another name for Benlysta right? (Benlysta is the scary drug I don't want to take)
NRD: Yes
Me: Not happening.
NRD: You'd rather take Rituximab than Benlysta?
Me: Dude, have you seen the reports on Benlysta's side affects!? (yes, I actually called him dude)
NRD: I would rather be tied to a train rail and run over by a train before taking Rituximab over Benlysta (that may not have been his EXACT example, but there was tying and pain involved). Rituximab has a lot more side affects that Benlysta, especially during the infusion process.
Me: But Benlysta seems to work for only about 0.35% of patients who take it
NRD: Well, yes that's true.
Me: (I just stared at him)
NRD: Well, I was just talking the side affects, not how well it works.

Oh NRD, you are funny. But that was good info he gave me about the Rituximab - I wasn't aware and will have to consider that.

Anyhow, we'll cross the medication bridge when we come to it. The good news is I walked out of My Rhemuo Doc's office with a purse full of a new pain med to try since the Vicadin isn't helping (yeah, bad sign when narcotics don't cut it. I hate narcotics. I mean, I am thankful they exist to help people in pain, but I don't like putting them into my body). So here's hoping the pain management goes better during the next few weeks while New Rhemuo Doc and My Rheumo Doc chat.

As for the Mayo Clinic, I am tabling that after New Rheumo Doc confirmed the research I have been doing that Mayo doesn't have a strong Rheumatology area (they are AMAZING in other areas). It also turns out that the top Sjogren's research center in the US is in Oklahoma (yay for something closer than Minnesota). If needed, they can send me there for more opinions. Or to Johns Hopkins or Harvard, who both have very strong rheumatological research institutions. Good to know I have some impressive options available.

I am so incredibly thankful how God moved and allowed me to get in sooner to get a second opinion. I had prayed just this morning for My Rheumo Doc and I to have wisdom about what to do next and thanked God for the knowledge of medicine and that we would apply it appropriately. God doesn't always answer prayers immediately, but today He did, and He knew He was going to even before I knew what to pray this morning. That's how awesome my God is. Thank you Lord.