I’ve just started a brand-new Pulmonary Arterial Hypertension medication called Uptravi (selexipag). It’s replacing the horrible horrible Tyvaso that I’ve been on since 2011.
Tyvaso is inhaled through a nebulizer four times a day. My dose was 18 breaths (4 times a day) and it was awful awful awful. Every breath made me cough ferociously, and the whole process left me exhausted, drained, and headachy every time. Up till now it was better than the alternative, which would be an infused medication delivered via a permanent IV pump with all the associated risks — infection, blood clots, etc. I /really/ didn’t want to deal with that, so I stuck with the Tyvaso.
Uptravi, which is the same basic type of medication as Tyvaso but delivered via tablet, was just approved by the FDA in December of 2015 and went on the market in January 2016. It took a long time for my insurance company to approve it, and for everyone to give me permission to start it, but two days ago, Friday March 11, I finally took my last Tyvaso treatment and started my new Uptravi!
Uptravi has a lot of terrible side effects, naturally, and can be hard to tolerate, so there’s a very slow titration process. They sent a nurse to my house to walk me through it and give me all the warnings in person. I started at 200mcg morning and evening (12 hours apart). Then after a week they’ll send a nurse out to check on me. If everything is good, I’ll go up to 400mcg for a week. And so on, until I reach 1600mcg “or the highest tolerated dose”.
I had some bad nausea the first night but no side effects since then. It’s so amazing to finally get away from Tyvaso and I’m incredibly grateful to the scientists who keep inventing new treatments for my terrible debilitating rare incurable illness.
They’re not really sure if Uptravi will make me feel better (every PAH patient reacts differently to medication), but it should slow the worsening of my condition. And I won’t be coughing all day!
In other medication news, I’ve switched from Tracleer to the newer, less-potentially-deadly Opsumit and also started Digoxin to help my heart beat slower and stronger. Also I’ve gone up to 20mg of Lexapro and it’s amazing. I don’t feel anxious and depressed all the time anymore! If you have anxiety and/or depression, please don’t be afraid to try some meds in addition to talking with a really good therapist.
I recorded another chapter of “Young Folks’ History of Germany” this morning :)