Tyvaso side effects and challenges 2019-01-04T16:37:29+00:00

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  • Kate H
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    #10872 |

    Hello, I was diagnosed in Sept. 2018 with PH stemming from Sinus Venousus ASD (also one of the rarest forms of ASD – rare stuff is my thing, I guess? haha), after the initial diagnosis testing they did a RHC and my pressures were very high 100+. I am still a candidate for a repair of my ASD since I am only 27 but only if they can get my pressures under control.

    I was put on Tadalafil, Opsumit (Adcirca) in Sept. and last month was started on Tyvaso. The Tadalafil helped a TON and I was able to resume pretty normal activity. Opsumit seems to have helped, although, I havn’t noticed as dramatic of a change as when I started the Tadalafil. My Dr. wanted to wait for the Tyvaso since my blood pressure runs pretty low and had reservations about it lowering it too much but after now getting up to 8 breaths (starting 9 tomorrow) I’ve been ok blood pressure wise, it’s slightly lower than it was but no issues with it.

    I am having pretty bad coughing and headaches now that I’m on the Tyvaso and was wondering if others experience this and if they’ve found anything to be helpful in reducing it or if it’s just a waiting game to see if it’ll calm down once I’ve been on it for awhile. Usually for the first hour after doing my breaths I will have a headache which seems to be made worse by me having to cough really hard, usually when I exhale. I’ve had to slow down the step-up process because of it but even so, the symptoms are still pretty bad.

    My diagnosis, in general, has hit me pretty hard and I am trying my best to accept it and do what my doctors want me to do but honestly I hate having to lug the Tyvaso bag around with me everywhere and have people ask if I’m getting sick because I’m having crazy coughing fits. Having to deal with a headache for 4 hours out of my day has also been difficult and I’ve started wanting to do things less and less again because of it. I feel like just when I was starting to be able to actually go out and enjoy life again I’ve taken steps back instead of continuing to move forward. I know it will be worth it if the extra medication has helped my pressures (next RHC is at the end of this month) but I’ve just been frustrated. Hoping to hear from anyone who’s been on Tyvaso before or is on it now, what were your experiences and, if you had any, did the side effects get better?

    Thank you

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