Thank you dear readers for your words of encouragement, and for hanging in there with me. Today I finally received the phonecall that I've been waiting months for - a decision on which treatment I can try next.
The drug of choice is Enbrel, a biologic medication. Related to Kineret, but according to my medical team it's a safer alternative. Not without risks, but my doctors have thoroughly reviewed the pros and cons of several potential meds to find the one that is the best fit for me.
It's likely to be a month or more before I can begin treatment. Appointments with specialists, discussions with our insurance company (this stuff is REALLY expensive!). Maybe even the chance that the pharmaceutical company can give us a break too. If I ask very nicely?
I'm off to start the paperwork!
Friday, April 30, 2010
Monday, April 26, 2010
Anxious for a decision
I've been quiet for the last few weeks, at least as far as posting goes. Truth is, I'm feeling pretty rotten and it's an effort to sit in front of my computer. And I haven't felt like sharing. I'm thrilled to finally be off the steroids (about 2.5 weeks and counting) but as my doctor predicted, the pericarditis is not only acting up - it's screeching at the top of its lungs at me.
Last night was pretty scary. I'd say that it was the worst chest pain so far in the more than two years since the pericarditis was detected. And not just my chest, the pain wraps itself around to my back, my left arm and up into my neck. I feel like I'm being strangled by a boa constrictor that just won't loosen its grip. And of course it was worst at 2 a.m. - that wicked hour when all is much too quiet, leaving imaginations to run wild. I'd not yet slept though I'd gone to bed three hours earlier. And then the tears started. And I don't cry easily from pain. Or maybe it was sheer desperation that nothing has eased the pain and the difficulty of breathing. All these drugs, and nothing good has come of them.
I have my next hospital visit tomorrow. I spoke with my doctor earlier today to let him know of my discomfort, to see if he wanted to schedule any additional tests. He let me know that the review of meds continues, he's not yet ready to offer the next treatment. His team is leaning towards chemo, and I'm hoping to try one of the new biologic meds (Kineret that I mentioned in my last post). In the meantime I've doubled up on my current meds to try to ease the pain (and I'm very happy to report that I'm feeling better this evening than I did last night).
This waiting is nearly intolerable. I'm on-line reading up on the results of drug trials of both drugs being reviewed, asking myself which side effects I'm willing to bear - on one hand I'm grateful that the internet can offer us so much information, but then again maybe it would be better if I had less to digest at the moment. And I wait.
Last night was pretty scary. I'd say that it was the worst chest pain so far in the more than two years since the pericarditis was detected. And not just my chest, the pain wraps itself around to my back, my left arm and up into my neck. I feel like I'm being strangled by a boa constrictor that just won't loosen its grip. And of course it was worst at 2 a.m. - that wicked hour when all is much too quiet, leaving imaginations to run wild. I'd not yet slept though I'd gone to bed three hours earlier. And then the tears started. And I don't cry easily from pain. Or maybe it was sheer desperation that nothing has eased the pain and the difficulty of breathing. All these drugs, and nothing good has come of them.
I have my next hospital visit tomorrow. I spoke with my doctor earlier today to let him know of my discomfort, to see if he wanted to schedule any additional tests. He let me know that the review of meds continues, he's not yet ready to offer the next treatment. His team is leaning towards chemo, and I'm hoping to try one of the new biologic meds (Kineret that I mentioned in my last post). In the meantime I've doubled up on my current meds to try to ease the pain (and I'm very happy to report that I'm feeling better this evening than I did last night).
This waiting is nearly intolerable. I'm on-line reading up on the results of drug trials of both drugs being reviewed, asking myself which side effects I'm willing to bear - on one hand I'm grateful that the internet can offer us so much information, but then again maybe it would be better if I had less to digest at the moment. And I wait.
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