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    • #29260
      Jen Cueva

        Although we have discussed most of the PH treatments in topics throughout the forums, we wanted to make a specific post about each treatment. This is so that we only discuss this specific treatment here. We will do this for each treatment so you can easily access this information.

        Today we will share about Opsumit (macitentan). Opsumit is an oral medication; It is an Endothelin Receptor Antagonist (ERAs). ERAs prevent blood vessels from narrowing. Opsumit was FDA approved in October 2013. Opsumit is a once-daily pill.

        The most common side effects are stuffy nose or nasal congestion, sore throat, bronchitis, headache, flu, fluid retention(swelling), urinary tract infection (UTI), low red blood cells or anemia, and liver problems.

        Females who take this must have a pregnancy test before starting and each month before refilling this medication.

        They offer some copay assistance programs and options to help pay for Opsumit, called Janssen CarePath.

        I did have an experience with Opsumit for about 6 months. It was in combination with Revatio. I had to stop mine because of the increased swelling and anemia issues. It was also time for me to add something stronger. Of course,  the monthly pregnancy tests were annoying.

        If you or a loved one has experience with Opsumit, please share your experience here. Was this a first treatment? Let others know the pros and cons you have about this treatment.



      • #29262
        Gayle Ward

          I have been taking Opsumit for three years and it has worked well. The nasal congestion and bronchitis come and go but my overall health has improved. It is expensive but it has worked for me

          • #29279
            Jen Cueva

              Hi @gward, I am happy to hear that Opsumit is working for you. I certainly agree that overall improvement outweighs nasal congestion. Thanks for sharing.

              , that is such a positive to know that despite the side effects, you are happy with it. Do you take it in combination with other PH meds? Thank you for sharing your experience.

              Do either of you use the Janssen CarePath to help with the financial costs?

          • #29263
            Amy Carle Babcock

              I have been taking it too. I haven’t noticed any swelling and the congestion is cumbersome but overall it has been worth it.

            • #29264
              Peter G Pierce

                I’ve been using Opsumit for 3 1/2 years. It replaced Letaris which I had to discontinue due to the severe nasal congestion. I frankly haven’t noticed any positive effect (I also take adcira orally and remodulin subQ). I experience some intermittent congestion but have been attributing that to allergies here in this Oklahoma wind bowl. It is quite expensive even with Medicare Part D.

              • #29265
                Leslie Campbell

                  Hi. I’ve been taking Opsumit sine first diagnosed with MCD (Scleroderma)related PAH about a year ago. I began takin Adempas also shortly thereafter so it’s hard to separate side effects one from the other. I do remember feeling a headache, nausea, and a terrible stuffy-headedness, which worsened with Adempas and remains My worst complaint. My ears are ringing, my nose stuffed up, making it harder to breathe, And my head full of wool. My eyes also Feel Lazy, vision blurry; And, of course, the everpresent fatigue. But, what is the alternative?

                  That these meds are available is miraculous, and I am just starting another, Esbriet, to slow the lung fibrosis. Sorry not to be able to be more specific, but hopefully others experiences will help clarify different side effects of different meds. Good discussion to have. Thank you.

                • #29266
                  Leslie Campbell

                    I should have mentioned that I feel great improvement in overall being on these meds, Opsumit especially and actuall now I’m thinking About how it was and is Adempas that reLly made the side effects so bad

                    • #29281
                      Jen Cueva

                        Hi @leslie, I am hoping that Esbriet will help your lung fibrosis. I know PF patients take it, and most do well with it.

                        I am a tad nervous that you mention Adempas was worse for you as far as side effects. I am getting ready to start that one. I am on Uptravi and Revatio at this time. I always keep in mind, we all react differently to these treatments.

                        When will you start Esbriet? I am grateful that you can share your experience; thank you.

                        I have not seen you in a while, don’t be a stranger.

                    • #29270
                      Colleen Steele

                        Opsumit (macitentan) became available when my son was waiting for transplant, so he never got to try it. Just want to thank everyone for sharing their experience with it. Although it might not be the best option for everyone it is good to see more PH treatments becoming available.

                        • #29282
                          Jen Cueva

                            So true @colleensteele, we all learn by reading others’ experiences on these treatments. I am thankful that so many more oral treatments have come out. Like Cullen, when I was first diagnosed, we did not have all of these options.

                        • #29280
                          Jen Cueva

                            Hi @pete, I am sorry to hear that you have not noticed any positive effects from Opsumit. I think that maybe the Adcirca and Remodulin are more effective. Have you asked your PH team if they can take you off it since you do not see any positives? Maybe the Adcirca and Remodulin are enough for you, per your reports. I would be interested to know if they stopped it if you would notice.

                            Yes, the treatments are so expensive, I agree.

                            Oh, like Oklahoma, the dust and allergies get crazy here in Texas, too.

                            Take care, and great to see you post again. Thanks for sharing your experience.

                          • #29287
                            Leslie Campbell

                              Hi Jen, yes, I’m sorry to say I had trouble with Adempas. I started at .5 mg dose 3x a day. Definitely felt the side effects more acutely than I had Opsumit. I stayed at that dose about a month or so longer, for my body to get more used to it.

                              When We upped the dose to 1.0mg I was only able to stay at that dose for two weeks. I was determined though to go higher for a greater benefit. So I suffered through, and still am really, the Worsened s/es. The highest and desired dose is 2 I think, maybe 2.5. I will stay at 1.0 for now.

                              But, I had talked to Doc and was told some of the other alternatives had WORSE s/es. So, you may find this to be so for yourself. I sure hope so.

                              Now, the Esbriet. It’s the third day and I have felt terrible all day, upset stomach, cramps, nausea, and……diarrhea. On and on we go, day to day. When will you start on Adempas? Sorry to be so negative. Do bear in mind that I tend to attribute most of my symptoms to the meds rather than the disease. I am anxious to hear how you do.

                            • #29288
                              Gayle Ward

                                I take tadalafil as well. Jannesen care pathways requires you be at the poverty level before they offer support I believe.

                              • #29291

                                  My Goodness am I blessed to have the opportunity to relate with those who have this horrible affliction. Thank You.
                                  OR should I just say G’Day.
                                  I have been taking macitentan since first diagnosed in june last year after three years of hell. It has been a miracle
                                  drug for me to be able to have some semblance of a normal life. I also take tadalafil for ,apparently , that extra boost. I have the nasal congestion ,ear issues etc. side effects and until I discovered this site was convinced either it was the tadalafil or the giant cell arteritis was coming back.
                                  I did accept the Janssen Carepath offer so pay nothing .Actually the Australian Govt.recently added macitentan to the Prescribed Benefits List and at worse the cost is around USD30 per month .If retired and have less than a million excluding living quarters .USD5

                                • #29309
                                  Jen Cueva

                                    Hi @terry, I am so happy to read your contributions to the forums already. The others will also appreciate you as you share. I am grateful that the macitentan has been a life-changer for you.

                                    I was unsure if the Janssen Carepath was available to those like yourself outside the US. Thanks for sharing that news. The copay assistance programs can certainly help.

                                    The Australian government adding it to their “prescribed benefits” list is a huge positive.

                                  • #34489
                                    Sarah Beth Shingler

                                      I have been on Opsumit for three years. The biggest side effect that I deal with is the nasal congestion, but I take Zyrtec everyday and that seems to help.

                                      • #34499
                                        Jen Cueva

                                          Hi @sarahbeth31819, yes, nasal congestion is common with many of our PH treatments. I also have used the plain generic Zyrtec (cetirizine) suggested by the pharmacist at Accredo once. I only take it occasionally when I become too stuffy. I also use an OTC saline nasal spray that my PH team approved. Of course, nothing with a decongestant since that’s usually a no-no for those with PH.

                                          I’m happy that you’ve found Zyrtec helps you. Did your PH team or someone suggest you try it?

                                          Enjoy your Memorial Day weekend.

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