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?
Answer Summary
Members shared mixed experiences with Tyvaso DPI, with some reporting significant side effects like headaches, nausea, brain fog, flushed... Read more
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
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.
I have never been given an inhaler for PH. Inhalers are for bronchial tubes not lungs.
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.
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.