10-12-09 Update
I can’t believe it’s been 8 months since I posted. Unfortunately, that’s primarily due to not having much news. In June of this year my former rheumatologist made the decision to deny treatment because of an issue she was having with my insurance company. Little did she know that I work in the industry and that, in fact, I work for my insurance company (Coventry Healthcare) – they got real antsy when I mentioned contractual violations. ;o) But her mistake turned out to be a blessing in disguise, as so often happens. Here in Central Texas, one of the biggest groups is Scott & White, they’re affiliated with A&M Health Science Center, so they get top notch doctors. I wouldn’t have made the switch had I not had an issue with my former doctor, but since I was forced into a corner, I made the leap and I’m glad I did. Scott & White stresses collaborative care, so you get the best of all worlds! I love my new rheumatologist, she’s up on the latest treatments and tests and has actually done more for me in two months than my former rheumatologist did in over a year.
The first thing the new doc said was “let’s run everything again, when a patient fails as many medications as you have, you have to wonder if the diagnosis was correct.” So 8 vials of blood (nope, not joking) and many x-rays later, we were off and running. X-rays have not been showing disease progression, which is common in the earlier stages; they’re just not fine-tuned enough, especially for the small joints like fingers and toes. So when those came back with nothing, the next thing she ordered was an ultrasound of the joints in my hands and feet. The ultrasound told an entirely different story. The radiologist was actually in the room when the tech was working on my toes (and how often can you say that?!) and his reaction was “Oh yeah! You’ve got erosions all through here!” Not really what I wanted to hear, but by the same token, it proved that there was something going on. The ultrasound can also show where there is active inflammation but no erosions yet (erosions are caused by the inflamed joint lining or synovial fluid eating away at the surrounding bone), which means we know what to monitor!
Having those results lets us know how aggressive we need to be in terms of treatment – in other words, pretty aggressive. I’ve been switched to a higher dosage (the highest an RA patient can have) of the chemo medication and I’m now injecting it instead of taking it in pill form. I’ve been having absorption issues for a while, so the hope is that if we by-pass the stomach altogether, the medication might actually be absorbed and do its job. I can tell from the increase in headaches that I’m definitely getting more of the medication in my blood! I’ve also been put back on the steroids, hopefully a short term solution. The next thing to look at is the stomach issues, to see if they’re related. I’ve had them for years but now the thinking is that they may actually be an inflammatory bowel disease that went undetected. Therefore, I’m scheduled for a colonoscopy on Wednesday, the 14th. The gastroenterologist is also going to scope my throat while he’s there, I’ve had some issues swallowing so he said that although it’s “too high” to be his area of expertise, as long as I’m on the table, he’ll take a look and refer me to a specialist if he finds an issue. He’s been warned that I have a tendency to talk in my sleep and has assured me they’ll record me just in case I say something interesting. I really enjoy these new doctors! I like being able to crack jokes and not be looked at like I need a 72-hour hold. Sorry, mental health humor, it comes with the business I’m in :o)
The next exam will be a bone scan for an issue with my left foot. One of the toe joints is causing an issue and there’s some concern that there may be a stress fracture that we just can’t see on x-ray. The doctor injected the joint two weeks ago in the hopes that it was just inflammation and that the shot would help. The only thing the shot did was startle my mom, since it made me go completely white – which I remained for at least a half hour, the time it took to drive from the doctor’s office to pick her up at work. Yeah, that’s a bit painful. I don’t complain often but that one hurt like a mother. It might not have been so bad if she didn’t have to stretch out the deformities first to even find the joint and then got to work getting the needle in what proved to be a very, VERY small area. Wow. Won’t be signing up for one of those again anytime soon! The bone scan isn’t scheduled, I’m waiting to get through this week’s round of fun before moving on to that one!
Hopefully, once all of these exams are completed, we’ll know which way to go with treatments and I’ll be able to get on something relatively quickly. Keep your fingers crossed for me!
The first thing the new doc said was “let’s run everything again, when a patient fails as many medications as you have, you have to wonder if the diagnosis was correct.” So 8 vials of blood (nope, not joking) and many x-rays later, we were off and running. X-rays have not been showing disease progression, which is common in the earlier stages; they’re just not fine-tuned enough, especially for the small joints like fingers and toes. So when those came back with nothing, the next thing she ordered was an ultrasound of the joints in my hands and feet. The ultrasound told an entirely different story. The radiologist was actually in the room when the tech was working on my toes (and how often can you say that?!) and his reaction was “Oh yeah! You’ve got erosions all through here!” Not really what I wanted to hear, but by the same token, it proved that there was something going on. The ultrasound can also show where there is active inflammation but no erosions yet (erosions are caused by the inflamed joint lining or synovial fluid eating away at the surrounding bone), which means we know what to monitor!
Having those results lets us know how aggressive we need to be in terms of treatment – in other words, pretty aggressive. I’ve been switched to a higher dosage (the highest an RA patient can have) of the chemo medication and I’m now injecting it instead of taking it in pill form. I’ve been having absorption issues for a while, so the hope is that if we by-pass the stomach altogether, the medication might actually be absorbed and do its job. I can tell from the increase in headaches that I’m definitely getting more of the medication in my blood! I’ve also been put back on the steroids, hopefully a short term solution. The next thing to look at is the stomach issues, to see if they’re related. I’ve had them for years but now the thinking is that they may actually be an inflammatory bowel disease that went undetected. Therefore, I’m scheduled for a colonoscopy on Wednesday, the 14th. The gastroenterologist is also going to scope my throat while he’s there, I’ve had some issues swallowing so he said that although it’s “too high” to be his area of expertise, as long as I’m on the table, he’ll take a look and refer me to a specialist if he finds an issue. He’s been warned that I have a tendency to talk in my sleep and has assured me they’ll record me just in case I say something interesting. I really enjoy these new doctors! I like being able to crack jokes and not be looked at like I need a 72-hour hold. Sorry, mental health humor, it comes with the business I’m in :o)
The next exam will be a bone scan for an issue with my left foot. One of the toe joints is causing an issue and there’s some concern that there may be a stress fracture that we just can’t see on x-ray. The doctor injected the joint two weeks ago in the hopes that it was just inflammation and that the shot would help. The only thing the shot did was startle my mom, since it made me go completely white – which I remained for at least a half hour, the time it took to drive from the doctor’s office to pick her up at work. Yeah, that’s a bit painful. I don’t complain often but that one hurt like a mother. It might not have been so bad if she didn’t have to stretch out the deformities first to even find the joint and then got to work getting the needle in what proved to be a very, VERY small area. Wow. Won’t be signing up for one of those again anytime soon! The bone scan isn’t scheduled, I’m waiting to get through this week’s round of fun before moving on to that one!
Hopefully, once all of these exams are completed, we’ll know which way to go with treatments and I’ll be able to get on something relatively quickly. Keep your fingers crossed for me!
Labels: arthritis, ra, rheumatoid
posted by Amanda @ 12:06 AM
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