Florinef Update

[mkoven]

I've been on florinef now for about 2.5 weeks. i think it is helping some, and I like that it's longer acting than midodrine. I've done down to .05, because the swelling was really too much at .075 and at .1, though perhaps I would derive some more benefit. I'd like to talk to the docs at Cleveland about long term effects before upping it. The swelling is variable. Late in the day my fingers and toes look like little sausages. But when I wake up they're almost normal. My bp has not really changed much though I've had fewer lows. My pulse sometimes gets scarily slow and I feel odd-- upper 40s/lower 50s. Don't know if that's me or the midodrine. It doesn't always happen, but recently when I"m crashing it does seem slow. At the doctor's office on Friday, I hadn't really gained any weight, so that was nice.

I guess since my echo showed mild diastolic dysfunction, I want to make sure that I'm not doing any damage to the heart with excess fluid.

Midodrine helps, it's just so short acting, after 2.5 hours, I can feel it lose its effect. After three hours, it's out of me.

I'm still having some nasty crashes in the late afternoon/early evening. My period has played a big role there. I have yet to go back to the office, as there's not good place to totally lie down when I do crash. And now, once I start to crash, it takes several hours before I can safely be upright. I can be quitely reading, and then suddenly feel like I can't breathe/chest pain. And then my only option is to lie totally flat with my legs elevated. And then I"m stuck on the floor for up to two hours till it settles down-- usually till I've taken my next dose of midodrine and it takes effect. How annoying. And it still freaks me out, frankly.

When not crashing, I've been trying to get a little stamina back. I'm now up to two ten minute s-l-o-w walks a day. I can still will get chest pain/short of breath/lightheaded, but then I stop till it settles down. I try to time these walks for less symptomatic moments, when midodrine is in full effect. I also have been essentially doing laps around our building, so I"m never more than a couple minutes from home if I do feel bad. Kind of boring. Since my heart has passed all the tests for heart disease, I think we're relatively confident that those symptoms are from low bp. (I'm still having pain from the groin puncture site, but the doc thinks it's just healing of hematoma.)

Still not where I want to be, but a little better.