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    • #27812
      Colleen Steele
      Keymaster

      New member @azad would like to know more about Adempas. We have discussed this treatment a number of times but I thought it would be helpful to make it a specific topic.

      Do you or have you taken Adempas? What can you share about your experience with it?

    • #27819
      Jen Cueva
      Moderator

      I have not taken Adempas, but my PH doctor did suggest that if the insurance does not continue to pay for my Revatio, we may switch that to Adempas. Most often, Adempas is used by those who had blood clots, CTEPH but can be used in WHO group 1 PH patients.

      Here is a link to their website, but maybe others will share who has experience with Adempas.

    • #27850
      Jimi Mcintosh
      Participant

      Been on Adempas for about 5 years, no major side effects, has helped to slow down the progression of PH, not as damaging to kidneys and liver as some of the other therapies

    • #27853

      My PH was diagnosed in 2012. I have CTEPH and was fortunate to have the surgery to remove blood clots from my heart & lungs in 2013. I gained strength back by going to pulmonary therapy rehab and I still have some lung damage. After gaining some strength back I began taking Adempas in 2014. I have more energy now!
      I enjoy exercising @ gym, riding my E Bike and walking for 2 miles.
      I have not noticed any adverse side effects.

    • #27868
      Jen Cueva
      Moderator

      Thanks for sharing @jimi, what other PH treatments do you take with your Adempas? Sorry, my CRS kicks in daily, LOL.

      I am asking because I am so on Uptravi, and my PH doc may switch my Revatio to Adempas.

    • #27869
      Jen Cueva
      Moderator

      Thanks for sharing, @jacquelynnsegarsuhl. I recently got an e-bike, and I love it. I have not been much the last few weeks as my hubby has had some medical issues we are working with. I am grateful that the Adempas has not been causing you many side effects.

    • #27896
      Jen Cueva
      Moderator

      Hi @tervo, here is the recent post where some members were curious about those taking Adempas. Maybe you can share your experience here. Thanks, and I look forward to learning from you, too.

    • #27899
      Jimi Mcintosh
      Participant

      Adempas is a decent drug with few side effects. It requires user to titrations from .05 mg to max of 2.5mg. If you go longer than 3 days without it, you start over on titration. I experience a light headache at times, occasional fatigue. Adempas has less of an impact on the kidney and heart. It is a little pill in shades of orange based on strength.
      Bayer Pharmaceuticals has a great financial assistance program. Likeanyspeciality drug, it’s effectiveness can vary. It has kept me off dialysis for over 5 years

    • #27901
      Terese Tuohey
      Participant

      I’m so glad to hear that some folks are having no problems with Adempas. It was the medication of choice for me as I recovered from CETPH/PTE surgery. Unfortunately, I reacted badly. I had the mother of all migraine headaches, got an upset stomach, full on nausea, flushing so badly I looked like a ripe tomato, and finally vomiting. That was all on the first day, and on the lowest dose. Needless to say, my doctor took me off Adempas right away. I am now on Tadalafil, and except for a mild headache, I am tolerating it well. And there has been significant progress in my 6 Min walk after just one month on Tadalafil. I think there are just some of us who are more sensitive to medication than others.

    • #27903
      Colleen Steele
      Keymaster

      Thank you everyone for sharing your experience with Adempas! @azad has this helped you? Do you have any questions about Adempas that hasn’t been covered?

    • #27911
      Tony Wiley
      Participant

      Hi All :Yes I have been on adempas for 5yrs with no side effects.

    • #27914
      Joe Flynn
      Participant

      I’ve been taking it since Jan 2020.
      It took a while to get to max dose.
      Had headaches and abdominal pain but these have completely resolved.
      I do believe it helps me w exercise tolerance

    • #27915
      Carol alexander
      Participant

      I too have been on Adempas .o2 not a problem now took about 2 weeks to get used to started at .05.

    • #27916
      Jen Cueva
      Moderator

      Hi @jimi, thanks so much for sharing that with us. For me, this sounds like Adempas may be a better selection than my Revatio. Just reading about how it is better for your kidneys is a plus for me. Thanks for also sharing the financial assistance program. You offer so much inspiration.

      Take care, buddy. Have you been doing any cooking lately?

    • #27917
      Jen Cueva
      Moderator

      Hi @tervo, you share an important fact. Not all of our bodies react the same to these treatments. This is why it is important to speak up and let our PH team know of any side effects or changes while taking treatment. It would be much easier if we had an “all for one” treatment, but life with PH is far from easy, hehe.

      I am happy that you did find that tadalafil workers best for you with minimal side effects. Thanks for sharing.

    • #27918
      Jen Cueva
      Moderator

      Thanks, @tony, for sharing. I am happy to hear that with 5 years, you have no side effects. That is a positive for sure.

      Hey @joef, I am happy to hear that your side effects from Adempas have resolved. That is always positive, right?

      Hi @carol-alexander, thanks for sharing your experience with Adempas. I do recall when you started it, too. How are you doing with this and the compression vest?

      I am certain that @azad appreciates each of you sharing your experiences. I am learning about Adempas, too. Thanks.

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