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    • #13995
      Randolph Reynolds

      The progression from Adempas alone to Adempas and Remodulin is a challenge. The side effects are listed on the Remodulin web site. What is not clear is whether or not the site pain where the cleo tubing connects with the site pin will completely go away. It is clear that changing sites for the pump will cause a period of pain. This makes sleeping difficult. Does anyone have experience with Remodulin and perhaps we can share that experience?

    • #14012
      Brittany Foster

      Hi Randolph,
      there was a topic posted about sub q pain under the discussion for “side effects and symptoms” It’s titled “sub q pain” . I posted it for another member. Is this the type of pain your’re talking about? One of our members, gave this response to her and maybe it could be helpful for you to look into?

      ” Sorry to hear that you are having such issues with your sub q sites. I’ve been there at one time 6 years ago. I’ve been on Remodulin Sub Cutaneous for 6 years now, and may be switching to Orenitram soon. But, I think I can help you in dealing with some of your issues. I too go thru Accredo and had the same problem of my site lifting off within a week of insertion. I was issued Plogel to help with the pain and I would gently place some around the site. But I found that the Plogel worked underneath the cathedar and sure enough after a few days to a week off it would come leaving you with a new site and another week or two of intense pain. So here is what I recommend, that you ask Accredo for during your next reorder. Ask for about 11-12 of what is called an IV3000 covering (it goes over the top of the cathedar after you cut a hole in it)and whenever you change your pump and refill a new syringe you will change the IV3000. For me that is every 3 days. I am assuming that you receive alcohol wipes, and skin barrier wipes, I do. When my refilled pump is ready for use, I then shut off the depleted pump, unplug it from the cathedar and then I carefully remove the old IV3000 so as to not lift the cathedar. Then I wipe wide around the cathedar with an alcohol wipe for about 30 seconds to remove any skin oils, etc. Then I wipe the area with the skin barrier wipe which repels moisture and really gives the IV3000 a great sticking surface. (Note: I cut a hole in the middle of the IV3000 that is almost exactly the same size and shape of our cathedar plug in area.) So with a clean area now ready, I pull off the first large backing paper off the IV3000 and when lined up with the cathedar plug in area I place it down removing the remaining backing paper off the IV3000 and smooth it out flat. (This may sound more complicated right now, but believe me once you learn and do this once or twice you will find it well worth doing.) I was told to replace my site every 6 weeks by my doctor and I went from only able to get 1 week before the site came off to going 6 weeks before I literally have to remove the cathedar. I wanted to post you a picture of the IV3000, but I can’t seem to log in with my cell phone to paste it in. I do not use the Plogel anymore as it didn’t give me enough pain relief and loosened the site. I found that ice packs work pretty good along with oral pain medication. I don’t need tape anymore to hold the cathedar in place either. I hope my info helps you and if I can figure out how to paste the picture of my prepared IV3000 I will add it later. I don’t want you suffering with the pain every other week, it’s tough enough every 5-6 weeks restarting a new site. Site pain for me usually fades away between 7-13 days after startup. By the way, I wish I could take credit for the IV3000 hole cutting, but I had to call and speak to a nurse who talked to another nurse and got back with me about it. Nurses are the best! Good luck, hope this helps. ”

      Hope this can be helpful. It was posted by another member ! @douglas-knuth

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