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A myPHteam Member asked a question πŸ’­
Pinellas Park, FL

I'm having so many side effects from the inhaler. I slowly took myself off it and feel so much better. Anyone else who can relate to this?

October 27, 2023
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Answer Summary

Members shared mixed experiences with Tyvaso DPI, with some reporting significant side effects like headaches, nausea, brain fog, flushed... Read more

Members shared mixed experiences with Tyvaso DPI, with some reporting significant side effects like headaches, nausea, brain fog, flushed feelings, loss of appetite, and prolonged coughing that lasted up to 30 minutes after each dose. Several members described practical strategies that helped them tolerate the medication better, including cooling the mouth and throat with ice water before inhaling, sipping carbonated drinks afterward to ease throat irritation, and titrating slowly to higher doses. A recurring theme was the tension between gratitude for life-saving medication and the reality of debilitating side effects, with some members finding relief by switching to different treatments like diltiazem, while others credited Tyvaso with improving their breathing and overall heart function despite the daily struggle.

A myPHteam Member

I fully understand, head fog is the worst and no energy. I am using my meds less because I can't get a clear answer from any doctor and feel horrible. I am trying to find a cardiologist who treat PH in my area and see if this helps. Thank you so much for your reply. Take Care

January 8, 2024
A myPHteam Member

Hi Betty. I have been taking tyvaso dpi for 6 months. The side effects are severe. But I am going up in dosage to 64 tomorrow. Dr thinks it is best for me. And I should acclimate. I have to try. I am waiting for that "MANAGEABLE" part of the diagnosis to start.

October 30, 2023
A myPHteam Member

I have never been given an inhaler for PH. Inhalers are for bronchial tubes not lungs.

October 30, 2023
A myPHteam Member

Good day all. Re tyvaso dpi I stayed at 48. Never went to 64. In the morning I feel pretty bad for a couple hours. Sometimes all day til 7pm. I have no appetite, lost 12 lbs, lightheaded, lowers BP. On it since May 2023. I take mild anti depressant. Also adempas. Oh golly. I feel worse than I did a year ago. But I can breathe better. Oh gee.

January 9, 2024
A myPHteam Member

Betty, I too am using the Tyvaso DPI. I used the other 'steam' method of Tyvaso for about two years before switching to DPI. While I love the relative convenience of the powder inhaler, I don't think I'm tolerating it as well as the other version. I swear, I usually feel worse right after a session; particularly the first of the day. I actually feel decent when I get up in the morning prior to that first application, but then I take that first treatment and it makes me want to just sit there for awhile, due to the hot, flushed feeling.. the head fog.. it's hard to find words for the general malaise. It just feels pretty crappy immediately after a treatment. I do think subsequent treatments later the same day improve somewhat.

I'm torn, because I'm grateful the meds exist at all, and I don't want to complain. But I do wonder if there's another 'cocktail combo' I could be on that would work better for me.

January 7, 2024 (edited)

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A myPHteam Member asked a question πŸ’­
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