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Starting Remodulin SQ

Starting Subcutaneous Remodulin:

(Again, I’m posting so that my friends know what’s going on, and also so that other patients might find useful information.)

On Friday, Henry and I travelled up to the UCSF medical center (Uber, BART, Muni). I always allow a good time buffer when taking public transportation, so we left at 9:30 and arrived at 11 for my 11:30 appointment. Hung out in the waiting room for a while and then the nice Accredo nurse, Soyoung, who trained me at home, showed up! I wasn’t expecting that, and it was nice to see her again. Eventually we went back into an exam room and a nurse tested my vital signs as usual, and took a quick EKG. All normal (for me).

Then Nurse Jill came in. She’s one of the team of three nurses who help Dr. Janmohamed’s Pulmonary Hypertension patients — Jill, Nimi, and Amanda. I’d never met Jill before but we had spoken on the phone many times, so it was nice to finally meet her! She’s absolutely lovely. We had a long talk about how I’m feeling — PH symptoms, Uptravi side effects, etc., and she listened to my heart and lungs. And then finally, finally, finally, I was allowed to start my meds. Soyoung asked if I needed another demo, but I said nah, I’m ready to just do it myself.

So, as Jill, Soyoung, and Henry watched, I started a new infusion site, filled a vial with meds, put the vial into my pump, and programmed my pump. It’s a complex multi-step process which I’ll get Henry to video one of these days so you can see exactly how it’s done.

And then, once the meds were actually infusing into my body, Henry, Soyoung, and I waited. And waited. And waited. A nurse showed up now and then to check my vitals, which were fine. After three hours of being observed they let us leave. At that point there was very slight pain at the infusion site but not much.

By the time I got home, it was hurting a bit more, and by bedtime it was hurting even more. Ice helped quite a bit, though I need to be careful not to let my infusion site get damp from condensation.

I didn’t sleep well, but not because of the pain, which was moderate. The problem was that one of my oxygen connectors worked itself loose in the night, so I kept dreaming that I couldn’t breathe, and waking up over and over gasping and with a ferocious headache. I finally thought to check my connectors around 5:30am but never went back to sleep, gah! So yesterday was pretty rough, between site pain and no sleep. I kept icing the site, which helped, and I tried rubbing a little Aspercreme around the area, which also helped.

Jill and Amanda both told me that one of their Remodulin SQ patients says that marijuana oil rubbed around the infusion site is the best pain relief, so M got one of his SF friends to go to the medical marijuana dispensary and get me a bottle of Absorb CBD oil (CBD gives pain relief but doesn’t get you high). I rubbed a bit on last night, and within 20 minutes the pain was much much better!

Last night I slept well, and this morning the pain is still quite tolerable. I don’t know if the CBD oil is still effective, or whether enough time has passed that my body isn’t freaking out anymore. Whatever.

I am starting at the lowest possible dose, which is (get this) 0.002mL/hour. My little pump holds enough meds for three days, so on Monday Soyoung will show up at my house again and make sure I do a good job changing the vial. Every week we’ll raise the dose by 0.002mL until I can’t tolerate the side effects, just like we did last year with Uptravi. And maybe someday I’ll actually be able to breathe better. Maybe.

Category: Blog 2 comments »

2 Responses to “Starting Remodulin SQ”

  1. jane

    I wanted to know how your Remodulin treatment is going and if you have found a good way to control pain. I’m on Remodulin for 7 months now and I find pain is becoming a very serious problem. You mentioned CBD oil – does it still work at higher infusion rates? (I guess you figured pain increases with the infusion rate, not with over all dosage).
    I read about your problems with the alergic reaction – I also had it for couple of weeks but it fixed when I stopped using adhesives and just left the infusion site uncovered.
    I hope you’re doing great, I’m sorry if I’m bothering you with my questions, but it seems to be very hard to find people willing to discuss their Remodulin treatment.
    Also, I noticed you said your infusion site is on your thigh, could you tell me where exactly you have put it and what areas are in pain in worst days.
    I’ve so far put it on my belly and on my arm, I found the arm preferable, but lasting less. When on my belly, I can’t walk for days and I feel pain and get swollen from my ribs to my pubic bone. It sucks. On my arm, I get all my arm swollen for days, can’t use it much for about a week, but at least I can walk. And seems to bother me less. But current record on my arm is 1 month, on my belly, 6 weeks. I’m obviously far from the goal of 8 weeks.
    Anyway, if I’m too annoying, please excuse me. I hope you get your allergy under control and your treatment works great for you. I wish you all the best!

  2. kara

    I’m glad to answer your questions! I’ll email you :)

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