Today, I will get a call from my rheumatologist, Dr. K. She should be giving me the ok to start on Methotrexate (MTX), plus giving me the results of Friday’s labs and x-rays. I’m curious what they will show. Nothing? Normal everything? Or damage to my joints? Is it more comforting to hear that someone can “see” your problem via abnormal labs or x-rays? Or to hear that you are normal, despite your pain? So far, my labs have mostly shown up with problems (except for a few, of course), and my ct scans were also normal. So I am not sure what to expect from the x-rays.
Besides being a bit freaked out about hearing from her today, I am also pretty freaked out about starting MTX. Yes, I know the protocol now for treating RA is treat aggressively early to prevent rapid progression of the disease. But MTX is a chemo drug. MTX has a reputation of making its users pretty miserable, at least at first. I have been asking on message boards- what is the best day to take MTX? Because I know- and they know- that when you first start taking it, you will likely be miserable for a day or two, and it’s better to plan those days of misery around your life. And how much does that suck?
I am also pretty anxious about the increased prednisone I am on. I am anxious to kick it back down to 10. Hell, I’m anxious to completely get off the prednisone, and I am so worried about the weaning process. I keep hearing horror stories of people who can never get off it. But wow- this upped dosage makes me so irritable and jittery. I hate it, even as I love the effects: my hands function; my shoes fit.
And here’s one more thing to worry over: I messed up cooking dinner last night. Again. Forgot to push a button on the rice cooker, ending up in no rice until Bill went to the local Chinese place to buy some. Last time, I made this meal, I also screwed up the rice. Other mishaps recently in the kitchen: broken bowls, broken cups, broken salad dressing bottles. Add in: difficulty getting things in and out of oven, difficulty reaching anything over my head (which is much of the kitchen), inability to climb the step stool to reach those things, and difficulty reaching the bottom shelves of the fridge (which was somewhat corrected by rearranging everything and creating a “shelf” just for me). All of that adds up to: I am a wreck in the kitchen.
As I told Bill last night, I used to be an extremely intelligent, totally competent and totally capable person. And now I am intelligent, incompetent and incapable. I am forgetful, accident-prone, unable to reach and lift and carry, unable to do all of the baking I want to do solo.
What I want to know is this: if I take the prednisone and deal with the side effects and I take the MTX and deal with the side effects, will I come out the other side with the ability to do the things I love again? Or am I simply holding off the disaster of the future for a bit longer? Treading water where I am right now before I get worse?
When we took the x rays Friday, some of what Dr. K wanted were baseline x-rays. X-rays of my feet and chest “before” so that we can compare them later to the “after”. Translation: sometime in the future my feet will be damaged and we will want to see how much and how quickly it has happened? Sometime in the future the MTX may cause me to have lung problems, and we will want to have a comparison.
The question, I guess is: when?
All of this worry and freaking out, and it is not quite 8 in the morning. I have a whole day in front of me. Here’s hoping I can find some distraction til Dr. K calls!