Rheumy Appointment

Yesterday I had my appointment with Rheumy, and it totally messed up my original plans for the evening. The appointment was for 120pm and I didn’t get out of the clinic until 4pm, making my originally intended plans for having dinner ready at an acceptable hour, impossible.


So Rheumy still feels that Rituxan is the best course for treatment for me at this point in time. But HawtDoc’s reservations are pretty much rendering the treatment’s benefits nul & void as of now. We’d basically be starting my body all over again from scratch. I have an appointment next week for 6WT + ABG so that we can FINALLY get the ball rolling on having oxygen coverage from the province (at least!). After that, we’re going to have our chat regarding doing the steroid Prednisone for a month before reconsidering Rituxan.

From Rheumy’s perspective, she is wholly NOT keen on the idea of doing a round of steroids mainly because of the long term side effects it could cause me as I am already on a baseline steroid and have been since birth. There is a possibility that the pain in my hips is being caused by long term steroid use, but because of my baseline condition, unrelated to SALLY, there’s no chance of ever NOT having steroids in my body.

Having said that, I asked her opinion of CellCept and she was totally a-okay with the idea of switching out my Imuran (current baseline immuno-suppressant) for it. Apparently CellCept has been shown to be more beneficial for the treatment of Scleroderma, Lupus Nephritis & Interstitial Lung Disease than the Imuran. Given that I’ve been on the Imuran since we finished with the chemo drug Cytoxa (way back when), she would rather we swapped out the CellCept instead of giving me more ‘Roids.

We already know that the ‘Roids are going to make me:

A) Run around like a chicken with its head cut off
B) Eat everything in sight
C) Gain at least 10 pounds from the combination of “EAT. ALL. THE. THINGS!!” + Water Retention the steroids are famous for
D) EXTREMELY RAGEY (very NOT good at this time, given current family situation)

In the end, once we taper the dosage back to zero, my breathing will be back to the same feelings of suffocation as they do without them now. So the question becomes: When will we make a final decision on how to treat my conditions from this step forward?



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