Pulmonary Fibrosis News Forums Forums Treatments and Science Mycaphenalate and Tyvasol-still looking

  • Mycaphenalate and Tyvasol-still looking

    Posted by george-poulsen on July 3, 2024 at 3:54 pm

    I have asked once before and found only a few people who have been on this combination of Micaphenalate (Cellcept) and Tyvasol (Treprostinol).

    Now 84 I decided not to try other meds in favor of quality or quantity of life 5 years ago. So far still breathing but wishing it was easier (right or wrong). But using Inogen setting 5 all day and setting 4 at night. Nighttime keeps me around 98% and daytime somewhere 90% with up and downs. Somewhat stable now but never no when it will stumble down.

    Back on my subject, I have had Micaphenylate strongly recommended for me due to Rheumatoid Arthritis involvement. I have also separately had Tyvasol recommended for my Pulmonary Hypertension. A few folks wrote in with some limited information on using these but seemed to not have any real negative results or positive results to indicate they’d recommend it. So today I noticed an article in the Wall Street Journal about United Technologies and their work with Tyvasol which they say seems to be having a positive effect on their sales. So is that a marketing pitch or why haven’t we been hearing more about Tyvasol on the forums. I’m kind of ready to jump in with both of these meds but would sure love to see a few other people who are using it provide some input on pros/cons first. And thanks to the few who did reply.

    julian replied 2 weeks ago 4 Members · 3 Replies
  • 3 Replies
  • Paul Carey

    Member
    July 5, 2024 at 5:47 am

    I am enrolled in an open label trial of Treprostinil via inhalation 4x daily. My use of the open label medication began in January 2023 following a year in a blind trial. By the end of 2022 symptoms of PAH had appeared. My diagnosis of IPF was made following a biopsy in June 2018. My symptoms first appeared in December 2015. I am in the care of a well experienced Pulmonologist and am examined/tested quarterly by the associated Research Division.

    Treprostinil has resolved my PAH. My current trial is intended to test the effect of this medication upon the actual fibrosis. In recent years we have arranged annual high-resolution CT scans to observe and compare the fibrosis progression. As of March 2024 the fibrosis has shown no change as compared to the prior year, an encouraging sign.

    I live alone and maintain my home and grounds (about six acres) on a tributary of the Chesapeake Bay, which affords opportunity for useful exercise.

    I have no illusions with respect to my vulnerability to respiratory infections, so for all practical purposes I have discontinued all but the most essential travel. I have maintained the personal protections of COVID and I do keep my vaccinations current.

    My personal impression is that Treprostinil is beneficial, and for that reason, I would intend to continue to participate in this trial if permitted to do so.

    With best wishes,

    Paul.

  • John K. Grubb

    Member
    July 5, 2024 at 11:33 am

    I WAS DIAGNOSED WITH IPF IN LATE 2021. STARTED ON OFEV IN APRIL 2022.

    I WAS NOT SATISFIED WITH MY DOCTOR SO IN APRIL 2024 I SWITCHED TO A RESEARCH PULMONOLGIST. HIS ASSESSMENT IS THAT I MAY HAVE IPF OR PULMONARY HYPERTENSION — THAT IT IS TOO EARLY TO TELL. HE IS CONDUCTING A DOUBLE BLIND RESEARCH STUDY USING A TYVASOL VAPORIZER TO ADMINISTER TREPROSTINIL. I STARTED TREPROSTINIL INHALATION IN MAY OF 2024.

    ONE OF THE REASONS HE SUGGESTED I PARTICIPATE IN THIS STUDY IS THAT TREPROSTINIL IS ALREADY BEING USED TO TREAT PULMONARY HYPERTENSION; THE PURPOSE OF THE CURRENT STUDY IS TO SEE IF TREPROSTINIL CAN HELP REDUCE THE EFFECTS AND DAMAGE OF IPF.

    I AM 80. WORK OUT SEVERAL TIMES A WEEK. I HAVE TAKEN PULMONARY REHABILITATION CLASSES. EACH SESSON IS 44 TIMES, 1 HOUR EACH, GENERALLY TWICE A WEEK. I HAVE COMPLETE 4 SESSIONS AND AM IN THE PROCESS OF SIGNING UP FOR MY FIFTH SESSION. NOT USING OXYGEN. GENERALLY MY OX LEVEL IS 96-100. MY NORMAL FORCED VITAL AIR CAPACITY IS GENERALLY IN THE 62-66% RANGE. MY DLCO IS LOW – AROUNG 43% CAPACITY.

    SINCE I AM IN A DOUBLE BLIND STUDY I DO NOT KNOW WHERE I AM GETTING TREPROSTINIL OR WATOR VAPOR.

  • julian

    Member
    July 6, 2024 at 10:52 am

    United Technologies or United Therapeutics? I worked for United Technologies for 28 years. A huge mostly aerospace conglomerate, but I don’t believe they ever made pharmaceuticals. They sold off most of their businesses several years ago to Raytheon.

Log in to reply.