So a few weeks back, I had seen Rheumy III and we were discussing the ‘magical miracle drug’. By now, all the doctors that needed to be informed about the treatment have likely been contacted and we’re slowly moving forward. The only doctor we’ve not yet heard from, unsurprisingly, is Cow Stamp Doc.
Earlier this week I had a follow up with Hawt Doc and we talked in a little more detail about what treatment(s) Rheumy III is toying with: IVIG or Rituximab. He doesn’t seem to have any preference one way or the other, but he did make very clear that whichever treatment she chooses, he is going to want to go back to seeing me on a very, very, regular basis again to keep a close eye on my lungs. He wanted me to be very clear that we have almost no wiggle room for me getting sick because I have both Interstitial Lung Disease & Pulmonary Arterial Hypertension working in tandem to make life more complicated when it comes to infections.
Seeing as we’re basically on the latter half of October, Hawt Doc doesn’t seem to think that we’d be starting treatments until the New Year, when my next appointment with Rheumy III occurs. It ~could~ start before then, but he doesn’t see any real rush to begin, especially since I’m still dealing with this cold-not-really-a-cold-or-virus thingy that I’ve been trying to fight off since my visit with him last month. It’s been an on-again-off-again fight where I’m trying to get over something, but it never really manifests into anything (thank goodness!). With all the fighting off of infections, it means I am just so dead tired all the time and it’s a frustrating vicious circle of ‘fight off potentially non-existent infection, feel a bit better, be thoroughly exhausted from trying to fight off whatever’s being a pain the ass’ then wash, rinse, repeat. So until that point where I STOP feeling like I’m coming down with something, he doesn’t want to put my body under any more stress than it needs to be.
As an aside, we did discuss how the whole treatment would be happening and it turns out both IVIG & Rituximab involve hospital outpatient IV infusion dosing.
Blurrgh.. Hospitals.. Blurghh… IVs… Blurgghh.. Blurrggh… Blurrghh…
Knowing that, I dunno if I actually signed up for this ride -_-;;;
No, that’s not true.
I did sign up for this and am, to some degree, kind of looking forward to the notion of making my Quality of Life better (I do hate those words), not to mention potentially reducing my pain issues, reducing the need for steroids and getting rid of the Moon Face, etc etc etc…
So yeah. For now, that’s all the information I have until:
A) I see Hawt Doc again
B) I see Rheumy III again
C) I see Cow Stamp Doc for the first time in YEARS.