I am going to have a conversation with my doctor today that I have been dreading for weeks now. Unless there are some surprisingly good results from my last round of blood tests (which, sadly, I do not anticipate), my doctor is going to recommend that I start Methotrexate (MTX).
For those of you unfamiliar with it, MTX is a pretty heavy-duty drug used in treatment of cancer and autoimmune diseases. It acts by inhibiting the metabolism of folic acid. I have a LOT of questions about its impact on my long-term health. The tentative good news is that most of the side effects are things that I already deal with. The big bad news is that I will have to stop treatment when/if we want to start a family (which is a whole other big discussion). The only thing scarier than taking this medication is if it really works and then having to stop taking it and knowing that my symptoms will come back. I literally have nightmares about being the way I was before diagnosis.
So, this is a pretty major decision for me for a lot of reasons, and, of course, I feel particularly terrible today. Do you ever have that? On appointment day you either feel better than you have in weeks or so miserable that you can barely move? I have several issues in addition to my regular discomfort and pain, and it’s hard to assess how I would feel if I didn’t have water retention, cramps, and an old lower back injury layered on top of everything else. Add (yet another) poor night’s sleep, stiff neck and a headache and I’d be feeling pretty lousy without all the underlying conditions. Altogether, it’s making things fairly horrible.
In good news, I did remember to call my pharmacy so I won’t have to fight with child-proof lids any more. Yay! Just in time for us to hopefully close on the house (it’s getting close) and move and have to start all over with a new pharmacy. Feh. However, this will also give me the opportunity to find a closer rheumatologist. I am a bit angry- the more research I do the more it suggests that my current medication is causing my digestive issues. However, my doctor said it couldn’t be, so I went through a lot of tests that showed everything else was fine, which points back to the meds. I’m pretty much fuming- it took months to build a connection with this doctor and I feel like my trust has been betrayed, so I’m not heartbroken about looking for someone new. The half-hour drive one-way is difficult now, on a bad day doing a two-hour round-trip is pretty much going to be impossible. Of course, this lack of trust also makes me that much more suspect about the proposed MTX change.
But back to my main question: do I really feel bad enough to take this next step, despite my concerns about the costs? Sadly, the answer varies from day to day. If I have a couple okay days in a row the answer is definitely “no”: I have some good days and some bad days, but mostly I can function, and maybe other changes will help me improve. On bad days, it’s “maybe”: yes, this is bad, but how bad is it really? I mean, I can still mostly function. It’s not comfortable or fun, but there are folks a lot worse off who do more with less. And that’s the crux of it I suppose- it’s all relative. Today? Honestly, today it looks mighty tempting. I’ve had several weeks of just barely dragging by and I’m mentally and emotionally exhausted, as well as physically. After four months of treatment I am backsliding instead of progressing, and my options appear to be fairly limited. I can keep on as I am, working on diet and exercise, reducing stress, and most likely trying a sleep aid, but even if all that goes well there’s no guarantee that it will improve the underlying condition.
I am so worn down, beat down, and tired that I’m afraid of making the wrong decision. But if I’m flailing this badly, then maybe trying MTX is the right choice? And if MTX doesn’t help, it is the path to biologics. I just don’t know.
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