So the first thing is my left knee. Or hip. Or something in that general area. I’ve been putting up with some issues for about six weeks or so and finally decided things were getting worse instead of better. I was pretty sure it was my left (replaced) knee because, well, that’s where it hurts. So I went to my ortho guy (who’s great) and after exams and prodding and turning things this way and that and taking Xrays, then taking more Xrays, the doctor says he thinks it’s not my knee but my hip. My main issue is that I’ve lost the ability to rotate my leg inward (think crossing your legs). It not only hurts, I physically can’t do that any more. This makes getting dressed, getting in and out of cars, etc. etc. very troublesome and very painful. However, it seems that this action is controlled not by the knee, but by the hip. The IT band that goes from the outside of the hip to the knee is definitely involved, but the Xrays of my hip are also showing some concern. So yes, I get to go to physical therapy for four weeks, but I also am having a radiologist-guided steroid injection into the hip joint. (Can you say, “ouch!”?)
Here’s the kicker: If the steroid injection provides significant relief, we know it’s the hip, right? Well, if it truly is the hip, I may be looking at (another) hip replacement sooner rather than later. So instead of getting a little love for my knee, I may be looking at a chunk of titanium for my left hip. I’m scheduled for the injection the middle of next week, so we’ll see how it goes. If the injection doesn’t help, then we go back to square one. If the injection does help, well, then I guess I’m scheduling major surgery (again …). This will be my fifth joint replacement in 11 years.
The second thing, in some ways, is even more of a left turn for me. I’ve always wondered whether or not I really have RA. Or something else. Or nothing. (Kind of like the little girl thinking she’s really a princess instead of a child of boring suburbanites.) All of my labs (including RA factor) have always come back totally normal, so there is no strong indication of RA, although there is no question that I have some kind of autoimmune/inflammatory arthritis. My latest treatment plan (of the 10 I’ve been on) has basically quit working and, in discussing this with my rheumy last week, she hit upon the fact that I get a lot of skin-related issues when my symptoms act up or treatments stop working, including a recent bout of inverse psoriasis (which contributed to my virtual friend and fellow advocate, Lene Andersen getting a hospital stay). So while I don’t have plaque psoriasis or even ongoing regular psoriasis, my doctor is considering that I might actually have psoriatic arthritis (PsA).
So why is this a bad thing?
Well, there are two issues for me. The first is that having a new diagnosis opens up different classes of drugs. Since I’ve basically failed on all but one of the RA-approved medications, having something new to try should be a good thing. Except that those drugs are all injections. Under Medicare, injections are covered under the Part D pharmacy plan which has copays rather than the Part D medical that generally covers infusions at no cost to me. Under my current plan, MY yearly cost of the cheapest PsA medication would be $152,000. In January, when I can change plans, it would still be $6,000 a year or $500/month. And since I’m on Medicare, I can’t participate in any patient assistance programs. So basically, I can’t afford a new diagnosis. (Well, okay, I can afford the diagnosis, just not the treatment.)
The second thing, to me, is somewhat more difficult for a variety of reasons. A few years ago I retired early due to RA. Not having kids, my career had always been a huge part of my identity. I was well known in my field and I had an executive position in an industry leader. All of a sudden, that was gone. I suddenly became “just” an RA patient. I’ve embraced that role, becoming more active in advocacy and working with both patient groups and pharma companies to support the patients’ voice in the healthcare space. If I no longer have an RA diagnosis, I lose that identity, too. I can still represent the autoimmune/inflammatory disease community, but I will no doubt lose the ability to continue with the various RA-specific patient advisory boards and communities I’ve come to enjoy so much. I can build relationships in the PsA groups, but I have more than 11 years invested with RA. Somehow I feel like I’m being laid off. (Is that weird? Yes, I know it is, but, is it really weird?) My rheumatologist did a flurry of tests that will hopefully provide some clarity on the situation. I usually see the results in a few days, but the lab says it will be another couple of weeks before I hear. In the meantime, I’m back on injected methotrexate and continuing on my biologic which might or might not be working (oh, joy).
So here I am. In the left-turn lane. With my blinker on. Waiting for the green light so I can go somewhere new. Or not.
These diseases make life difficult in all kinds of ways, including ways you don’t expect. I hope your life is far from difficult. Thanks for checking in.