There are some side effects that don't resolve with time but many do. I have been on IV REMODULIN since 2008. I credit it for letting me lead a somewhat normal life. Folks who do sub-q often can't tolerate the pain. IV has a little pain from the tunneled line for 2-3 days.

My two worst side effects are leg pain (managed with low dose Nortriptyline,) and GI problems managed by daily probiotics.
Titration is rough, headache and flushing. Much of it will be supervised in the hospital if they follow the process I went through.

Sounds like you will miss playing in water. It's the hardest part of life on the pump. That's the thing I still feel sad about.

They only put folks who are progressing and have severe PH on this. I went on the oral version for 2 years and my side effects were worse and I couldn't get to a therapeutic dose and began worsening. It is intimidating at first, but it is a lifesaver
Good luck and feel free to reach out to me anytime.

You need to do what is right for you. I didn't tolerate the Veletri well at all. I spent a week in ICU when they started me out on it. I instantly turned bright red and stayed that way for the whole time. I had a host of other strong meds to head off the side effects like the crushing headache, vomiting, weakness, insomnia, incontinence, and I couldn't eat more than a bite or 2 at a meal. My tubing kept having problems and had to be changed every few months. I still haven't gotten back in the water to snorkel even after I changed meds, partly mental and partly that the volcano ate our favorite tide pools. I can't go up to over 10,000 feet without having my oxygen levels fall (75!) Still, other people do very well with the IV and I might not be alive if I hadn't had that ordeal. I am just grateful to feel better and be able to lead a fairly normal life within the parameters I have. Adventure might not be happening but I can fix a meal and eat it, get yard chores done, groom my little poodles, (1 a day or 1 1/2) and spend time with my family.
I hope you can find the right treatment to get you back on track. I went from desperately ill to barely detectable PAH on my current treatment. Best of luck!

Oh, Heatherruth...I was on IV Veletri for more than 2 years--24/7, day in day out, manage the tubing and the site, make the cartridges and maintain the pump, be sure you always have a back-up set of everything every time you leave your house and try to live this way with the horrendous side effects, never get into water, protect the pump and site while showering, lug around the pump setup and the bag of spares (about 12 lbs. worth).... It may have saved my life but I finally said NO and switched to the inhaled 4 times a day Tyvaso and I have at least part of my life back. Be aware that it may not be your answer at all but there are other avenues ahead. It dragged me down so badly that I told my Dr. I would go to hospice if it didn't work. Just know what is involved before you start, which I did not. I think most people get used to the side effects but I never did. It was akin to being on chemo all day every day for the rest of your life. I will not do that again even if it means I die.
I hope you get the treatment you need and can stand it!

I hope sub q works well. Talk to the docs about managing site pain. Maybe lidocaine patch? The pumps available for sub q are smaller than the one for IV. You could ask your doctor about it and if they send a nurse from the speciality pharmacy they are the most informed about these details. Whenever you want to know specific care info ask nurses.
😀

Hey, @A myPHteam Member, is the pump so huge for the IV delivery? Looks large in the YouTube videos. Have you ever had contamination/ blood infection? If so, were you able to differentiate symptoms from the medicine? I'm going to try the subcutaneous version, seems like it might fit my active life better. Maybe not. We'll see. I hope this post makes it to you!

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