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Remodulin side effects?
My wife has been on remodulin iv for a week and a half and has a persistent cough. Has anyone had this, and does it get better? She is only on 1ml every 48hrs and we are hoping they will increase it because she is much more winded then when she was uptravi, very disappointed so far and we dont get a phone conference until tuesday with the doctor’s assistant. We really dont know how long they usually take to level thing out, and I know each is different but would be nice to hear others experiences. Thanks
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7 Replies
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@billb my son was on IV Flolan for 5 years. The two treatments have their differences but also several similarities. I am surprised that your wife hasn’t been monitored more closely by her team since she has only been on remodulin for a week. If you haven’t already, call and leave a message on the nurses line with your concerns. If her symptoms increase they might want to admit and monitor, especially when they increase her dose.
During planned increases or decreases of Flolan (especially at the beginning) we were given a chart to follow telling us when to make the change and by how much (dose and rate). I don’t know if that is something they can do with Remodulin.
Have your wide keep a medical journal of her symptoms. Note when they are worse and if there is anything that makes them better. This is often helpful when talking to the doctors.
Keep in mind that Remodulin is a powerful treatments just like Flolan. Unfortunately your wife will probably always experience some side-effects and starting out they can be bad. But, over time she should start feeling an improvement if she is responsive to the treatments.
I’m sorry. I truly know what you and your wife is going through. It is hard and I pray that she starts feeling better soon.
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Hi @billb, I am sorry to hear that your wife is not doing well on the transition to Remodulin. Colleen offers such great information. I, too, would suggest that you contact the on-call staff this weekend. They may need to increase her dosage. Like Colleen mentions, they usually monitor this more closely. Was she in the hospital to transition over a few days?
This may just be her body adapting to the new medication. It often takes some time before the best dosage is reached. Side effects will continue and usually the worst the first week or so when increasing.
Please update us as I do not want you to be home without her medical team, knowing how she is feeling. Take care of yourself, too
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Hey y’all, our lovely @ky shared that her Bryan continues to have pain with his IV site. But his site is on his belly because of his history of stroke and neuropathy. She’s tried a combo of preparation H, lidocaine, and flownase(?) to prep the site.
Does anyone have any suggestions for Ky and Bryan, as they are new to Remodulin? Where are all my Remodulin members? @Carol Volckmann, @Randolph Reynolds, and others who have experience with Remodulin. Thanks in advance for any feedback.
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My heart goes out to Byran. SubQ is tough! The first advice I was tod was to make sure I stayed 2″ away from my navel (there are so many nerves surrounding the navel). I also got prescription lidocaine patches and would wait 20 minutes before using the Cleo which is spring loaded to push into my tummy. I would also take a couple of Tylenols 20 minutes before. When the site got to painful, I had a prescription for Vicodin (for me, it really helped – some people react poorly with Vicodin but it took the edge off for me). When I needed to change the site to the ther side of my tummy, I would remove the old site and take a nice long hot bath and … start over again. Ice packs can help when you change your site or sometimes a heating pad feels good. Whenever I wanted to go swimming or take a bath, I would remove the tubing and cover the site with an AquaCell Foam waterproof wound dressing ( you have a 3 hr window before needing to hook up a new tubing. For me I was on SubQ for 12 years before it became too painful and I had to switch to the IV Hickman line and I have been on that for 5 years.
As I said, it is tough but Remodulin works. I wish I could help more – it did get easier after the first month or so.
All good wishes, my thoughts and prayers are reaching out to you! 😊❤️
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Hi @Carol Volckmann, thank you so much for your tips for @ky and Bryan with this new journey. You share so many options and what’s worked best for you. I’m sure they will appreciate this.
Thanks for sharing such personal yet important suggestions. I hope and pray some of these wll help them, too.
How are things going for you this wet Monday?🤗
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Hi sweet @jen, thanks for reaching out. You have been in my thoughts and I have been meaning to reach out to you. Wow, the weather you are still having sounds pretty terrible. Hope you and Manny are doing okay.
As you know we were supposed to be right there now but with procedures, hospital stays, feeling not great and now the weather. Someone was telling us to stay home.
I will catch up more later. Sending you lots of warm hugs full of sunshine 🌞!
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Hi, @Carol Volckmann; thank you for your thoughtfulness and thinking of us. We are good so far; most flooding is south of us. How’s your nephew? Isn’t he in the area, too?
I keep saying, I didn’t move to Settle with this rain. Hehe
Are you feeling better or not quite to yourself yet?
Aww, I can feel the sunshine you sent and hope to see a peek of it in the next few days.
I’m sending you extra love and hugs back. 🤗😎
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