• Rayetta posted a new activity comment 3 months, 1 week ago

    Thank you Brittany and Colleen. Finally have the Opsumit and have been taking it for awhile now. I haven’t noticed any changes yet, although I am hopeful.
    • Rayetta posted an update 3 months, 1 week ago

      I am now on the Opsumit. I have been taking it a little over a week. I haven’t noticed any changes yet, although I know that it takes awhile. I was told that it took 4-6 weeks to notice a difference and up to 12 weeks to get the full effect. I have been having some issues lately and not sure what the culprit is. I started retaining water…[Read more]

      • I’m sure it has been a long process! Was the hold up trying to get the insurance and everything to approve the medication? I know with specialist medications like the ones we need to take it is really hard to get approval and people have to jump through hoops to get what they need to live (unfortunately this is the case) luckily there are…

        [Read more]

      • Rayetta, I’m glad that you received the approval and started the Opsumit. As Brittany mentions, sadly, these medications often require insurance approval. Unfortunately, it’s hit like receiving most other common medications and you can just pick them up or have them delivered. On a positive note, once you’ve been approved and start the…

        [Read more]

    • Rayetta's profile was updated 3 months, 1 week ago

    • I ordered a medicalert bracelet last week. I just put two of my most important medical issues which were Congestive heart failure and pulmonary hypertension. I also put the three most critical medications I take. I chose the basic plan which allows whoever needs to, to call and get my allergies, medications and medical information. I wanted to…[Read more]

    • Rayetta posted a new activity comment 4 months, 2 weeks ago

      Hi, Tim. Welcome to the PH Forums!
      • Rayetta posted an update 4 months, 2 weeks ago

        Thank you for the information regarding opsumit. My doctor was going through the pharmaceutical company for assistance. I received a call yesterday from
        Actelion and I was approved for both the drug and funding. Now, I just have to wait for the CVS pharmacy that they go through to contact me. I am hoping that this treatment works. I still…[Read more]

        • Rayetta,
          I completely understand what you’re going through. It really is so hard to just feel like you’re taking a back seat to the things you once enjoyed doing. I really hope that the medication you are waiting on will start to help restore some of the things you CAN do! Having even just that small amount more of independence can make a world…[Read more]

        • Rayetta, I have been waiting for and hoping for this update from you. I am so happy to hear that the drug and funding has been approved. That is the first big step! I hope it works well for you! Check in when you can and let us know how you are doing.
            • Thank you Brittany and Colleen. Finally have the Opsumit and have been taking it for awhile now. I haven’t noticed any changes yet, although I am hopeful.
          • Rayetta posted an update 4 months, 3 weeks ago

            My cardiologist wants to add Opsumit to my treatment plan. I am currently taking Furosemide and Spironolactone for my water retention, plus Tadalafil and Cartia for the pressures. He said that they generally prescribe 3 medications under my circumstances, so his team is working on getting funding for the Opsumit. I guess ,it is very expensive.…[Read more]

            • Rayetta, I am so sorry to hear that your breathing has become more challenging! I am only familiar with Furosemide because my son was on that and it was constantly increasing. Perhaps one of our members are familiar with the others, espeicially Opsumit, and willing to share their experience on it? What I read on-line is that the cost for Opsumit…

              [Read more]

            • Rayetta, the following is a comment made by Jen who is having some technical difficulties. It’s good advice so I wanted to make sure you receive it. “Hi Rayetta, I was on Opsumit a few years ago. I am still on both the diuretics you are on for fluid and I’ve been on Tadalafil as well , I have never had issues with none of those . I do know that m…

              [Read more]

          • Rayetta posted an update 5 months ago

            Thank you.
            • ronald cole and Profile picture of RayettaRayetta are now friends 5 months ago

            • I was recently given samples of something called SalivaMax (available through prescription only). I have been reluctant to try it because of the sodium. I have tried Biotene and it hasn’t worked for me. I always have a supply of lifesavers or something sour such as lemon drops. I have a lot of issues with my teeth because of my dry mouth. I…[Read more]

            • I have recently found several guided mindfulness videos on youtube. I find that when I am focusing on my breathing, listening and following along with the guided meditations that I tend to allow myself to relax and forget about everything else around me. I have recently started doing these and I really feel that they help me. I also like to just…[Read more]

            • Rayetta posted an update 6 months, 3 weeks ago

              Thank you, Brittany. I am looking forward to checking out this site. Even though I was diagnosed over a year ago, I still feel like I am pretty new to all of this. I am still learning and most of my learning is coming from others who also have similar issues. My treatment so far is going okay. I struggled through last year and in December I…

              [Read more]

              • Hi Rayetta,
                I’m thankful that you were able to get this medications and get the insurance approval that you needed even though I’m sure it was a fight to get there ! But now that you have it, it’s great to hear that you are noticing positive changes with it and that it’s making a difference for you. I’m sure that made the push to get it all…[Read more]

            • Rayetta's profile was updated 6 months, 3 weeks ago

            • Rayetta became a registered member 7 months ago

              • Hi Rayetta,
                Welcome to the PH forums. I am one of the forum moderators along with Kathleen and I just wanted to welcome you and introduce myself. Please let us know if you have any questions about the forums. There are a variety of forum topics to look through on here. You can always post your own topic or update too and members can respond to…[Read more]

            • Rayetta's profile was updated 7 months ago

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