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    • #13845
      Liz Rogan
      Participant

      My pulmonologist has prescribed Adempas. The cost terrifies me. Anyone have anything pertinent to say about it?

      Thanks! Liz

    • #13846
      Kathleen Sheffer
      Participant

      Hi Liz,
      Thank you for joining the PH News forums. I’m so glad you found our site. I understand the new diagnosis can be overwhelming, but CTEPH is treatable, and many patients have success with medications and surgery. The cost of PH meds is certainly high. Do you have insurance? Have you looked into what your responsibility will be for the medication? Your medical team should be able to help you get access to this life-saving medication. I recommend talking to a social worker if the cost is truly prohibitive.

    • #13855
      Liz Rogan
      Participant

      I was actually more interested in its efficacy than advice about insurance. If I’m going 5o pay for it, I want to k ow that it works. Thx.

      • #13856
        Kathleen Sheffer
        Participant

        That’s a tough one. The PH patient population is such a heterogenous group with vastly different responses to therapies. Remodulin worked great for me, whereas some patients only respond to Flolan, and some don’t respond at all. I never had a chance to go on Adempas, but remember hearing hopeful reviews when it was still in trials. Your pulmonologist clearly believes it will help you, so I’d say, go for it!

      • #13860
        Ally
        Member

        Hi Liz, you might want to check out this archive of articles about Adempas on PulmonaryHypertensionNews.com: https://pulmonaryhypertensionnews.com/tag/adempas/ There may be information there for you that can help in your decision-making.

        Welcome to the forum!

    • #13886
      Tom C
      Participant

      Liz,

      Was diagnosed with CTEPH in 2013. Was prescribed Adempas when it was released. I too questioned the cost along with the what the diagnosis would mean short and ” long term.” I have been fortunate. have decent insurance, and regained a lot of what I lost initially and have remained stable for almost 5 years. Right heart pressures are still quite high but 6 minuet walk results continue stable. Good luck.

      • #13887
        Kathleen Sheffer
        Participant

        Tom, your experience is so valuable. I’m sure this will be comforting for @liz-rogan to read. I’m glad you are stable. In what ways are you still limited? Have you considered pulmonary thromboendarterectomy to treat CTEPH? Thank you so much for sharing!

    • #13890
      Jimi Mcintosh
      Participant

      I have been on Adempas for 4 years after trying several other medications.
      My 6 minute walk test is stable. My issue is the inability to climb stairs or walk further than 1/2 mile. My ability to walk and exert myself was better on Adcirca, often wonder about using them both as a combo?

      Every patient is different and you be on several different meds. Your medical
      Team will determine which one(s) is best with less side effects or potential damage to liver, heart or kidneys

      • #13893
        Brittany Foster
        Keymaster

        So true Jimi that every patient is different. With my underlying condition that is causing the PH, I am currently not on any PH medications specifically. More symptom management medications and medications for my heart. So there is a range of what patients take that help them. Have you asked you doctors about the combo of medications and if this is something they would be able to do for you? Stairs have become more difficult for me too and I end up getting a lot of muscle weakness with walking long distances. It can be so frustrating when your bodies aren’t doing what we want them to.

    • #13891
      Gayle Meagher
      Participant

      I am on Adempas. I am blessed to be on the free assistance program as we do not have ins. I will be 65 in Dec and get Medicare. Not sure what will happen then. I could not tolerate but .05. I tried all the way up to 1.5 but when he added Uptravi I had a rough time with joint and muscle pain; so he backed it back down to .5. I am on 400 Uptravi twice a day. He tried to add Opsummit and I just could not tolerate it. He feels good that the meds have slowed down progression; but numbers are stable; not greatly improved. Be blessed

      • #13894
        Brittany Foster
        Keymaster

        Gayle,
        I’m glad to hear that you have been stable with your numbers. It’s good that your doctor is listening to your concerns and taking your joint and muscle pain from the medications seriously.

        I know thinking about insurance must be overwhelming for you. I can tell that you are trying to keep the right positive attitude. That is so important !

    • #13910
      Iris Alexander
      Participant

      I would say it’s worth a try for sure but like others have said everyone is different so you have no way of knowing if it will work for you until you try it . I’ve been on it for maybe two years and always thought it didn’t make much of a difference bc I still struggle ALOT. Then I realized how much a difference it really made when I didn’t have it a solid week -I could barely walk five feet without having to stop, my shortness of breath was ridiculous and I generally felt dragged down

      • #13919
        Brittany Foster
        Keymaster

        Iris,
        I always get amazed by medicine in that way. When I feel like I’m not having any benefits from something and then forget to take a medication or have to stop a medication for whatever reason it’s like my body is unrecognizable ! During these times I try to shift my focus from thinking how “dependent” I am on medications to thinking about the actual benefits it is giving me. When I had to stop my beta blockers (heart rate meds) before an ablation, I woke up in a full sweat just a day after stopping it with a heart rate that wouldn’t get below 100. They ended up moving up the ablation so I didn’t have to be off of them too long, but I was like “WOW ! these things actually do help me !” . Sometimes I get so used to how I am on a medication that I think I’m actually getting better when in reality it is the medication that is helping my system function so I can feel better.

    • #13952
      Iris Alexander
      Participant

      Yeap Brittany best believe I won’t miss it another week

    • #13961

      I have done very well on Adempas. I started on 1mg I went quickly to the full 2.5mg dose. Then I started Opsumit. My PAH has gone from 52 to 35. I am doing well as can be. Life is still not easy and I am having a hard time losing weight. I started on 4L of oxygen and now I am on 3L. I am not yet taking uptravi which would be my next path my specialist says.

      • #13964
        Brittany Foster
        Keymaster

        Christopher,
        It’s always great when the numbers are improving , that’s very encouraging. I know that it is still difficult to manage the symptoms. Would you say that weight loss is one of the hardest things about this for you? What other symptoms have been difficult for you to manage? I’m glad to hear that you have lowered your oxygen liter flow. Hopefully that continues to improve too!

    • #13973
      Randolph Reynolds
      Participant

      Everybody
      After my first Heart Cath I was proscribed Adempas at 2.5 mg. three times a day. That was in Feb 2015. I was occasionally dealing with shortness of breath but it worked well for three years. Now my condition has worsened, I don’t know why so I take it a Remodulin (infusion). Remodulin has awful side effects. I don’t sleep well and I am waiting to see if it has helped my heart pressures. I still continue to take Adempas. I suppose my PAH specialist knows best. I continue to try to keep going along with supplemental oxygen but it is really an unwanted life change.

      I sympathize with all the various issues everyone one has. Outside of this group no one understands. Blessings toyou all.

      P.S. these drugs are expensive but I have excellent supplemental coverage.

      • #13974
        Brittany Foster
        Keymaster

        Randolph,
        it is always difficult to feel as though once a medication seems like it is working for you, they have to add something else because of symptoms again. Feeling symptoms worsen is one of the hardest let downs to deal with for me personally. Then there’s always the anxiety of “when is this going to get worse next? Will I have to change a medication again? How long will these side effects last?” Have you talked to your doctors about your side effects and if there is anything that you can do to try to at least ease some of them? Maybe you could start a new topic here and others may have some suggestions based on your side effects you are experiencing. You never know who has gone through something similar and it is good to have a group of people who are all in this together and there for each other. I’m glad that you have good insurance coverage! At least that takes SOME stress off of you when managing this condition. As if we need anything else right!? All the best to you!!!

    • #13994
      Randolph Reynolds
      Participant

      Good Idea. I wonder how many people with the various types of PAH run into confusing if not anxiety producing mixups? I suppose we could start a discussion on side effects. By the way I get confused on the WHO ratings and the severity ratings. I thought I had CTEPH but it seems there is more to it. I’ll have to pursue this with the Doc. I had a strange thing happen. My last three INR measurements (over about six weeks) were 2.1, 2.0, the suddenly rocketed to 11.0. That makes no sense to anyone. Well, that is how uncertain living with this disease is. By the way how do I start a question in our discussion group>

    • #14011
      Brittany Foster
      Keymaster

      Hi Randolph,
      to start a discussion in the group, go to the top of the site underneath where it says “Pulmonary hypertension News” you will find categories under that say “home, forums, about our forums,” Click on the “forums” tab. Under that you will see all the topics related to different subjects like “mental health, side effects and symptoms, medication, etc” click on one of those (I believe they are in blue) and you scroll to the bottom and it says “create your own topic” put in the title for it in the first small bar and then your message in the bottom bar then hit submit button. Let me know if you need any other help or if this was helpful!

    • #16566
      Kathleen Sheffer
      Participant

      @carol-alexander I saw your question earlier. You may be interested in this topic about Adempas.

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