I find that I'm fighting an overall sense of dismay over my illness. How dare it not respond to all the meds I've taken so far? What blinkin' nerve!
A few meds that I know I'll be adding soon:
- a biphosphonate to help with the bone density loss. I'm hoping this next one goes better than the Fosamax last summer. This time we'll be trying the intravenous route for delivery.
- a beta blocker. My heart rate has been out of control of late, and yesterday's data download from my pacemaker confirmed it. Over 8,000 episodes of a heart rate over 140 beats per minute over the last six months, most have no correlation to exercise, stressful situations etc. A good number in the middle of the night - I know my dreams are a bit wacky but that's a bit much! A bit ironic since I had the pacemaker implanted almost six years ago to deal with bradycardia - a very slow heart rate. That's still happening too, dropping suddenly to below 50 bpm on average about 15-20 times a day. My heart is the queen of cardiac roller coaster rides! It's time to exit that amusement park.
- and here's the drug I'm excited about. Kineret. Keeping everything crossed that I can cross that I'm given the chance to try it. Several other ECD patients have reported that Kineret has greatly reduced their bone pain (which has been getting significantly worse over the last months). An exciting prospect for this alone, but what really got me hyped was reading about a study whereby three patients who had been dealing with pericarditis has almost immediate resolution after the first dose! After having tried pretty much the same course of treatment that I've tried! (colchicine, steroids, other anti-inflammatory drugs). I immediately sent off the article to my doctor, who is now discussing the drug with his team. I'm on pins and needles waiting for my appt next Tuesday to find out if we can go down this path. It would need to be approved for use (it's meant for moderate to severe rheumatoid arthritis), and if approved then we'd need to find funding (I've read that the cost is between $15-20K per year in Canada).
Kineret is injected daily, both by husband and daughter are on board to give me an injection when it's time to rotate to a location that I can't reach. I'd be able to do the other spots myself. I'm getting ahead of myself though. It's hard not to, I'm feeling rather beaten down by the pain, fatigue and general unwellness of late. Just when I'm feeling better for a few days the pericarditis acts up again, letting me know who's boss. Time for a mutiny, don't you think?
Wednesday, March 10, 2010
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It sounds like a lot right now but hang in there Sessa. You are so honest, brave and strong. It may not mean much right now but I admire you so much.
ReplyDeleteSessa,
ReplyDeleteThe Kineret sounds promising. And combined with your positive attitude I'm more than a little hopeful it will yield a good result. I, too, am going to keep everything crossed for you. Please let us know if and when it's approved. If it gets rid of the pericarditis, I know that would be a huge plus for you. Sending all good thoughts your way, as always.
Rita