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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!