So. Much. CHAOS. Ugh, it’s been a very long 3 weeks. Here’s the scoop
Endocrinology: I had my yearly appointment October 29th. It went well, The bulk of the appointment was spent updating her on what’s gone on with my health. She ordered a full work up on labs, mainly to check my thyroid, parathyroid, kidneys, and liver. I am happy to report that everything looks fantastic and there’s no cause for concern. My potassium was a bit low again, so I’ll relay that info to my GI and go from there. Unless something comes up, I don’t need to see her until next year.
Rheumatology: This did not go as I planned or expected.
1. I expressed my concerns over the increased pain and swelling I’ve been experiencing, as well as a longer “heal time” for infections. He didn’t seem very concerned about any of it.
2. The last visit I had with him, he placed me on a low dose of Plaquenil and we agreed on increasing the dosage if I wasn’t getting any relief, so I assumed that’s what he would do. Nope. In fact, he wants to keep the Plaquinel and Cellcept the same and even asked if I wanted to go off Cellcept if I feel that it isn’t beneficial. I just laughed and told him I held no hope for ever getting off it. He asked I’d Cellcept was working and I told him that it is compared to not being on it, but I don’t think it’s working as well as it should. Story of my life.
3. I think I’ve mentioned it before, but Rheumatologist #4 didn’t have me get labs done prior to my appointment which I found odd. I gave him the benefit of the doubt and thought maybe he’d have me get labs there. Wrong. He said that because my GI ran my CRP in Sept (I think?) and showed that it was elevated, he didn’t see the point in him checking it. He is also relying on my (unscheduled but anticipated) lab work my Duke Hepatologist has ordered, so he didn’t order those labs either. No checking my kidneys, liver, CBC, CRP, nada. In his words, the labs wouldn’t affect any of his decisions, something I strongly disagree with. I’ve had at a minimum, my CRP, renal and hepatic function checked every 3 months for 5 years, because those NEED to be monitored.
4. I asked him point blank how long I can realistically be on Cellcept before my body crashes and he did a big no no, he compared my situation to someone else’s. And that person challenged to be his mom who has “been on Methotrexate for over 2 decades”. K, first of all, I’m not your mom. Secondly, I highly doubt that she has MCTD. Thirdly, your mom’s health is nowhere near mine and vice versa. I’m on a higher grade chemotherapy and have had steroids and dying disease progression over the last two years. Not a very good comparison and not a smart thing to do.
Nothing productive came from the appointment and it will be my last with him. I like him, I think he means well, but he is in way over his head with me, which is something we’ve discussed before. He isn’t used to patients like me who have not only a rare autoimmune disease, but 20 something other diagnoses and medications each that tie into the MCTD. If I had Lupus or RA, I think he would be someone I would stick with long term, but I’m not normal. I can’t be treated like everyone else, because I’m not like everyone else and I think that I need to be in an academic setting. So, I did what I felt was right, I went to my PCP. I asked her to run all those labs and send a referral to UNC Rheumatology, and thankfully she did all of the above. I’m awaiting the lab results and call from UNC.
PCP: Yet again, I ended up with a UTI. I started antibiotics on October 18th and was placed on a 10 day course of Augmentin (that was fucking miserable) ONLY to return on the 28th because I was still having symptoms. The initial test they do in house showed nothing, so my PCP tentatively diagnosed me with Interstitial Cystitis (chronic bladder inflammation) which would require long term medication. Yippie. She sent my urine for analysis “on the rare off chance they find something that we didn’t” and what do you fucking know, I ended up with a completely different bacteria (that I’ve never had) that was resistant to 5 different antibiotics including AUGMENTIN. I have no idea how that happened or why, but I’m now almost done with a 7 day course of Tetracycline and be honest, I don’t feel any better. This is exactly why I get my labs checked every 3-4 months, ESPECIALLY when I require a second round of antibiotics. I’m now sick with either a cold or a sinus infection, yay. I have a 3rd appointment with my PCP tomorrow and I’m anticipating going on round 3 of antibiotics.
Updates to follow.