Sorry about that long gap between posts again. This year has just been an endless cycle:
New medication. Bad side-effects for weeks. Slowly get better. Feel ok for a few days. Increase dose of new medication. Repeat.
A week and a half ago I finally started the highest possible dose of Uptravi: 1600mcg 2x/day. The side effects have been brutal. Same as in all my other posts, but extra-bad.
At this point I’m ok for about two hours after I take my first dose, and then I get hit with nausea, full-body aches, knee and foot pain, headache, hot-face, and fatigue. The headaches have been better for the last couple of days but the fatigue is worse. Or maybe it’s not actually worse, I just notice it more now that the headaches are better :)
Anyway. I lie in bed all day after that first two hours, just resting. I start feeling better again after about 6 hours, and now I sleep through whatever happens to me after I take the nighttime dose, though the first few nights were bad.
But that’s ok. Uptravi is definitely helping me feel better (when I don’t feel miserable, lol). I have turned my nighttime oxygen down from 3.5 lpm to 2.5 lpm, and I usually forget to turn it on until I go to bed, in contrast to six months ago when I needed it in the early afternoon almost every day. In the morning I can walk slowly for a while without any extra oxygen at all.
So right there, that’s worth all this agony! And the agony is coming to an end. In a month or two the side-effects will be much more tolerable, and I won’t be increasing again and I can just enjoy taking slow walks in the morning without extra oxygen :)