Remodulin SQ: the first few days

I need to take my mind off the evil, treasonous, poisonous Tr*mp administration (I wonder how long until I might be arrested for saying that?), so here’s another post about Remodulin SQ. My first infusion site is on my upper left flank, a spot I chose to be not in the way while I’m sleeping. Infusion sites last 4-6 weeks, with luck.

Day 1 (Friday): Started Remodulin SQ around 1pm. By evening, the infusion site was burning and itching a bit.

Day 2: Infusion site had swollen somewhat, and was quite painful. It was painful to put any weight on that leg, so I had to hobble around on a cane. I mostly stayed in bed and napped. I tried ice, Aspercreme, and CBD oil, and they all helped. The CBD oil in particular seemed to give a lot of relief, though that might have been a coincidence because it never helped again.

Day 3: The pain was somewhat better. Used lots of ice all day. Sat in bed and sewed a thigh-holster out of purple flannel and elastic for my pump.

Day 4: Purple bruising around infusion site (normal). Terrible terrible pain all afternoon and evening. The only thing that helped was ice, and the pain was only relieved while the ice was actually pressed against the site. So, I napped and iced my leg most of the day.

Day 5 (today, Tuesday): woke up with much less pain! Could walk without a cane for the first time since Friday! Cooked dinner! Sat outside with Rosie! By evening I was very tired and the pain was returning so I called it a day and went to bed at 6pm with a book and an ice pack. The ice kills most of the pain but only while I’m applying it.

So it’s difficult but tolerable. I’ll be increasing the dose on Thursday. I don’t know if the pain will increase as the dose does — apparently, for some people it does and for some it doesn’t. And then on top of site pain there are all the other side effects, which, on this tiny starter-dose, are nonexistent as of yet. Fingers crossed.

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