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    • #26824
      Jen Cueva
      Keymaster

      For those who are taking Revatio (sildenafil), I just wanted to give y’all a heads up. I received a letter yesterday that they will no longer be helping with this coverage for me. Revatio is no longer on their meds that are offered on this program.

      It does say that my coverage will continue through the date of my enrollment period or the end of the year, whichever is the longest. So, that gives me and anyone else time to check into other resources. I am sharing a few resources that may be helpful.

      The Assistance Fund

      RX Outreach

      Revatio Savings Card

      Pfizer Savings Programs

      Has Pfizer stopped converge on your medications? Did you find other copay assistance to help? If so, let’s talk about it.

    • #26828
      Janet Blumenshine
      Participant

      Yes. I just received the same letter. I was going to check with my doctor if he suggests another drug or generic before I apply for assistance. My insurance doesn’t cover the quantity that I need to take. I am using the Assistance Fund for Opsumit and Uptravi. They are great!

    • #26830
      Margie Novak
      Participant

      Yes, I received the letter as well. It basically was telling me that since Revatio was now in “generic” form I can get it that way so I was out of the program at the end of the year. I checked with the pharmacy that supplies me with my other medications and they said that they do supply Revatio in generic form so that is how I will get it. I have no idea what my co-pay will be! But, there isn’t much I can do. Take care all!! Stay safe

    • #26874
      Jen Cueva
      Keymaster

      Hi @jblum, it is certainly a great idea to check with your doctor first. I know that we also have time through the end of the year. How much Revatio are you taking? I take a higher dose, too, 20 mg, 3 tabs, 3 times per day. I will see what happens. I forgot that we had that issue in the beginning, I have been on it so long.. I am not opposed to trying the generic form.

      We are on two of the same meds, Uptravi, and Revatio. I have also taken Opsumit in the past.

    • #26875
      Jen Cueva
      Keymaster

      Hi @margie-novak, I love your optimism. So true, we can only move forward and find a solution that works for us. I hope that you can get the generic form, it is much cheaper I heard. You may want to let your PH doc know, too. Some do not want their patients on the generic form. I have a PHriend who was unable to switch as per her doctor. Have you talked o your doctor yet?

      I am sure that you are doing what you can to prepare for this change after the end of the year.

    • #26883
      Janet Blumenshine
      Participant

      Jen..I am on the same dosage as you. Last year he suggested that I switch to Tadafil but the insurance didn’t cover it at that time so I stayed on Revatio. I’ll wait for my next appointment to see what he suggests. Can I ask why you stopped Opsumit? Are you taking another drug in place of Opsumit?

    • #26890
      Jen Cueva
      Keymaster

      Hi @jblum, I also trued tadalafil, but it did not hold me through the day. The convenience of once-daily was a plus, but my PH doctor changed me back to my Revatio.

      I stopped Opsumit because it was causing issues with my anemia, and it stopped working as well. I am only on Revatio and Uptravi at this time. Well, and a boatload of others, lol.

      When is your follow-up again?

    • #26896
      Janet Blumenshine
      Participant

      My next appt. is up at Northwestern in Chicago on Sept. 21. I have developed anemia also and take iron infusions monthly when needed. They have never mentioned the relationship with Opsumit and anemia. Interesting!

    • #26908
      Jen Cueva
      Keymaster

      Hi @jblum, I hope that you will keep us posted when you do go back.

      My anemia was pretty bad by itself, so they are not 100% sure but did say that Opsumit can affect that, too. Actually, many of our PH meds affect our blood counts, my hematologist said. Let your PH doc know that you also have anemia. It is a crazy balance some times when having multiple illnesses. It is a catch 22, right?

      I hope that you will not have any more issues with your iron because of Opsumit.

    • #26924
      Janet Blumenshine
      Participant

      Jen…When my anemia became worse, they tested me for everything (blood loss, etc.) but could not find anything outstanding. My doctors–hema., PH and sclero., all said to get iron infusions. So that is what I have been doing. I do feel that some of my drugs cause different things but they can’t pinpoint which ones. Besides I need to take all of them. Will let you know the outcome from my appts.

    • #26935
      Jen Cueva
      Keymaster

      @jblum, you are not alone. Yes, so many side effects from the meds but we need the meds, there causing the catch 22. Do your iron infusions help you? I hope that you do get some benefits from them.

    • #26940
      Janet Blumenshine
      Participant

      The first round of infusions seemed to help. They did bring the count up. I think I felt less tired. Then the count went down again, but not as low. They do bring the numbers up, but I seemed to still be tired. Could be other things affecting the tiredness. Never know. But, I can still keep going!

    • #26962
      Jen Cueva
      Keymaster

      Hi @jblum, I am happy to hear that the infusions help some. How often do you get yours? Mine is usually every 6 months if I am lucky.

      Yes, we do keep going, love your optimism.

    • #26968
      Janet Blumenshine
      Participant

      I usually get them two or three months in a row until the numbers reach “normal”. Then I get blood tests every month to see when I would need them again. Sometimes it will go 4 to 6 months in between. Just got back from the GI doc and they are going to put me on an antibiotic for my gi issues. Scleroderma is a disease that keeps on giving!

    • #26973
      Jen Cueva
      Keymaster

      Hi @jblum, yes, when I get the infusions, I get either a series of 5 or 3. Then once my levels start dropping, we do to all again. There are a few different types of iron infusions. For me, the 3 series seems to last longest.

      I hope that the antibiotic helps your GI issues. Is this going to be short-term or a long-term preventative dose? I admire your sense of humor with scleroderma.

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