I have good news and some not so good news.
The results of both my Cardiology tests came back normal. I already posted the results of my echo earlier this week. I got the results of my 24hr monitor on Thursday and thankfully my palpitations don’t present frequently enough to cause concern. Still no explanation for them, so I think I’ll stick to my theory of dehydration being the culprit. I can continue to have just an annual appointment with my Cardiologist, unless of course, something comes up.
My Rheumatology appointment didn’t go quite as well, but I already knew it wouldn’t. I wanted Dan to go with me, and had no one to watch Av, so we made it a family affair. I went in knowing that my labs weren’t good and frankly, I needed to hear what the future might look like. I came armed with questions and counter comments for when he tries to dismiss me. Which he did. I asked him what happens if I max out on Cellcept and he, once again, told me two different stories. When I talked to him on the phone, (whatever day it was) he told me that if Cellcept is no longer effective, then there are other options aside from IV chemo. Yeah, no, there aren’t. He “didn’t know what I was talking about” when I mentioned that to him. He then proceeds to tell me that he’s exhausted all the options he has at his disposal. I’m annoyed but, it’s a moot point; I let to go. And to be fair, I have gone through every medication aside from steroids, because I’m allergic to Prednisone. Plaquenil stopped working, Methotrexate stopped working, Plaquenil combined with Methotrexate stopped working, and Cellcept seems to be following suit.
He presented me with 3 possible options [if I stop responding to Cellcepts max dosage]:
Option 1: Since the joints in my hands are always inflamed, (despite being on multiple medications to combat it) he wants to test me for RA (Rheumatoid Arthritis). I’ve been tested multiple times over the years, including a few times this year, and they’ve always come back negative. He wants to see if the results will come back differently this time and wants me to get an x-ray of my hands. If the x-rays showing thinning on the outer portion of my joints, he can prescribe me Orescia. It’s another immunosuppressant that is only approved for RA or Psoriatic Arthritis. Same risks, infection, cancer, yada yada. Since it’s not approved for anything but those two conditions, if there isn’t enough or any evidence of RA, then he can’t put me on it.
Option 2: Begin an unnamed form of IV chemotherapy that, according to my Rheumatologist “works well and does its job” AND costs $20,000 PER INFUSION. I have no idea what component of this medication “works well” and I don’t have a clue what “job” this does. What I do know is that my insurance is never going to approve this shit. So, yeah, next.
Option 3: Cytoxan. Full fledged chemotherapy, complete with every nasty side effect possible. Hair loss, nausea, vomiting, loss of fertility, low blood counts, and the best one, cancer. I asked him if taking that would give me cancer and he said yes. This is the ‘end of the road’ medication.
The easiest way to explain that statement is a hypothetical scenario. If you were to cut MCTD into 4 phases, each phase would vary based the severity of the symptoms and medication given. For example-
Phase 1: Mild, with symptoms that may not need medication. If medication is needed the ‘norm’ would be steroids and/or Plaquenil
Phase 2: Moderate, with symptoms that require an additional medication on top of/in place of ‘Phase 1’ meds. Those would be Methotrexate/Imuran/Other immunosuppressants
Phase 3: High-Moderate to the beginning stages of severe, symptoms are not resolving. ‘Phase 1 and 2’ medications are no longer effective. Possible organ involvement. Medications would be Cellcept/other ‘mid-grade’ chemotherapy/immunosuppressant
Phase 4: Severe, symptoms are not resolving, organ involvement, and the possibility of being treatment resistant. Medications would varying but are all considered ‘full grade’ chemotherapy.
I’m in Phase 3, rapidly approaching Phase 4. IV chemotherapy will kill me; we want to avoid it like the plague.
I can tell that my Rheumatologist is frustrated and losing hope. He asked me if I’ve ever gotten a second opinion (stupid fucking question), so I had to remind him that I’ve been to 2 other Rheumatologists and see another in February. He suggested that I should try to get an appointment with the Cleveland Clinic or the Mayo Clinic. I laughed, I had to. I told him that the waiting lists are most likely close to a year out and both are quite a ways away. He said that if waiting a year meant I saw ‘the best of the best’ it would be worth it. Maybe to him, but he isn’t the one being held prisoner by his own body; I am. I told him that I would look into getting those appointments (which I have), but I refuse to become a science experiment. I’ll keep my February appointment with the new Rheumatologist, in case this doctor has some form of treatment that my current Rheumatologist doesn’t have access to. I highly doubt that they will, but I’ll check it out.
In addition to getting the hand x-rays, he told me to get lab work done at the end of the month (which I’ve scheduled already) to recheck my CRP and see what my RNP, ANA, RA factors, and my hepatic and renal functions look like. If my CRP is still in double digits, then Cellcept gets increased from 2000mg, to the max of 3000mg. I have a follow up appointment in March to, I assume, see what my lab work looks like, to discuss what the newest Rheumatologist had to say, and figure out what the next step is. 2000mg is already causing me to throw up every other day and making me dog tired. 3000mg would absolutely kick my ass. But I’ll fight through it, always do. I’ll fight until my body has no more fight left.
I had to reschedule my ENT appointment due to my bouts of vomiting, and will see him this coming Wednesday. I’ll update on how that went and any other developments as they come.