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I’m doing fine on Remodulin! The site pain was very bad for about a week, and after that it only hurt in the afternoon and evening, and by the 11th day it stopped hurting, mostly. (I can still feel it — but I wouldn’t say it hurts.)

Ice was the only thing that really helped, so I spent a lot of time in bed with ice on my leg.

I’m up to 0.006mL/hour now, and down to 200mcg of Uptravi. On Thursday I’ll go up to 0.008mL/hour and stop taking horrible Uptravi altogether! Hooray, hooray, hooray.

Every three days I put about 1mL of meds into a little vial in my pump, a chore that only takes ten minutes or so, counting washing hands and cleaning all the equipment with alcohol wipes, etc. They supplied me with two pumps, which I need to switch every three days to make sure I always have at least one that’s working.

Showering is a bit of a chore. I unclip my pump, since it’s fine to stop my meds for a few minutes; the delivery is so slow that it doesn’t even build up to a drop on the end of the needle while I shower. Then I cover the site with a bit of plastic with sticky edges, and then cover THAT with a sheet of this special cling-film called Glad Press ‘n’ Seal. I tuck a little bit of tissue under the first plastic barrier to absorb any stray drops of water that might get through. Then while I shower I keep the shower handle low, to minimize spray on the site. Not too hard, just a little bit annoying.

Being off the Uptravi is such a relief. I had forgotten what it was like to not be in pain all the time. No more full-body aches. No more knee pain. No more foot pain. No more random muscle pain. Fewer headaches, less nausea. My brain feels clearer.

My Remodulin dose is still very tiny, but I think it might be helping already. Maybe. I think my oxygen saturation is a little better, on average. I need a nap every afternoon, though.

Couldn’t get it out of my head so I googled. Presented here for your enjoyment. Because WOW.

https://en.wikipedia.org/wiki/Prisencolinensinainciusol

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.

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.

A couple of days ago I got my Remodulin starter kit so I can start my meds tomorrow at my doctor’s office. I have searched all over the internet for information about Remodulin SQ (sub-Q, subcutaneous) so I know there’s no one else who has ever posted information about exactly what kind of supplies your specialty pharmacy will send you. This post will be photo-heavy!

Remodulin SQ is pumped through a tiny catheter under your skin, 24-7. It has all the usual treprostinil side effects: nausea, vomiting, diarrhea, headache, dizziness, jaw pain, flushing, skin rash, or injection site reactions. The injection site reactions can be severe, but they say the worst pain only lasts about a week after changing infusion sites, which you do every 4-6 weeks.

First I opened up a small box that contains three syringes of PLO-gel, which is a topical pain relief compound containing all kinds of interesting things including ketamine:

Then I opened the Big Box:

Here’s the packing list:

Here’s what I got:
Paperwork to sign and send back
Drug info sheets
Two CADD-MS3 pumps plus clip-cases, batteries, and manual
A binder to keep records in
Shower supplies, to keep everything dry
alcohol wipes
skin prep wipes (to make skin a little bit sticky to that the infusion set will stay in place)
Cleo infusion sets (a purple plastic gadget that shoots a little needle into your skin and leaves behind a tiny 9mm-long catheter)
Tubing to connect medication pump to infusion site
IV3000 sheets (stick-on dressing to protect keep the infusion set in place)
Durapore tape to tape down the tubing to my body so it doesn’t snag. Excellent tape.
Stuff to get the medication out of the bottle and into the pump (syringes, vial adapters, etc)
Sharps container
Rubber gloves (I guess in case there’s a situation where I can’t wash my hands before doing medication stuff. Also in case someone needs to help with my meds — it’s dangerous for others to get it on their skin.)
A travel bag (insulated, for temperature control)
A plastic tray, for a nice clean work surface
And of course a 20ml bottle of Remodulin, which was packed in silver bubble wrap with a cold-pack.

Here are a few more pics:

And here’s an album of all the photos I took:
Remodulin Starter Kit

If you have any questions at all, I’ll be glad to try to answer. I hope someone else who’s considering Subcutaneous Remodulin finds this post. This kind of specific information would have helped me a lot while weighing my options.

Wish me luck tomorrow!