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Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
March 14, 2023
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Answer Summary

Members managing severe PAH on Remodulin shared honest, detailed experiences about life with the medication, noting that while it is a... Read more

Members managing severe PAH on Remodulin shared honest, detailed experiences about life with the medication, noting that while it is a significant adjustment, many feel it has been a true game changer for their breathing and quality of life. Several members described the practical challenges of the IV and subcutaneous versions, including site pain, dressing changes, and limitations like not being able to shower freely or swim, while others shared tips like disconnecting during showers and using the smaller CADD MS3 pump for more convenience. A recurring theme was that the good days eventually outnumber the hard ones, and that mental adjustment and lifestyle changes take time but are worth it.

A myPHteam Member

I like others started with the large CADD IV pump and oral RX *(Tadalafil, Lateris, Torisimide, etc.) Now I have the tiny MS3 pump. Game changer. No IV tubing, or “mixing”. Draw up 2 ml of Remodulin. The same syringe is use in place of a cassette. It is changed every 72 hours. I disconnect it to shower. Cover the site with aqua guard. Plug backup after shower. Because it is small. I can pop it into my bra or Fanny band. I have honestly forgotten I had it! That is saying a lot. I replace the intruder site as needed. No big deal. It’s basically peel and stick. Same as an insulin spike. It can be placed arm, abdomen, side etc any place with some fat pad. 😬 it is painful the first day or so. The tissue adapts quickly. No ginormous boxes of supplies or wasted resources.
Best of luck 🎈

May 20, 2023
A myPHteam Member

My severe PH is well managed with three small doses of Viagra (Sildenefil) and Torsemide, a diuretic.

March 14, 2023
A myPHteam Member

I have CaddMs3 for over a year now. I started with the one that comes out ur chest and it was just too much for me so I now have the one that looks very similar to a pager. It is definitely a life changer but I have found things that they tell u don’t do is ok. For example I disconnect it while I take a shower. If u have more questions let me know. I do not get on this site to much but I’ll be looking out.

March 20, 2023
A myPHteam Member

I’m managing ok. Having a tube come out your chest puts a damper on life. Showering can be a chore and weekly dressing changes along with mixing medicine every two days is all a bit of a drag.

I have good days and not so good days. But I can honestly say the good days now outnumber the not so good days.

I’m feeling much better, it’s just taken a lot of mental processing and lifestyle adjustments. My life is much better because of the medicine, but it’s also much different.

Good luck on your journey.

March 14, 2023
A myPHteam Member

I don’t know anything on this. But, I would leave my post on here and in the meantime look up PAH on other websites as well as the drug. Sometimes I have gotten a lot more different info that has helped me to know what PH is. I had no clue when I was diagnosed. Don’t give up!

March 14, 2023

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