Comments on: Uptravi

By: kara

kara — Tue, 21 Mar 2017 02:41:12 +0000

In reply to Christy. Same story here. I managed to get up to 1400, and I felt a lot better November through January. I was able to turn my nighttime o2 down to 2 lpm and barely use it in the daytime at all. For the last couple of months, though, I've noticed a steep decline. My SOB is much much worse, and I had to turn my o2 up to 4 lpm at night and use it a lot during the day, too. My last 6-minute walk was terrible. Next step: Remodulin. :( I'm about to write a new post about all this...

By: Christy

Christy — Sun, 19 Mar 2017 13:20:38 +0000

Kara,
I posted last March about switching to Uptravi and I was wondering how you have done on it. I was able to go up to the maximum dose of 1600 twice a da. However, in February of this year I passed out after climbing stairs. My right heart cath showed my pressures have increased 25% after switching off ventavis. My doctor wanted to put me on an Infused medicine but I begged to go back on the ventavis since I’ve done so well. I’m about to make the switch back in a week or so. I hope you and others have had better success than me, but all indications for me is that Uptravi wasn’t effective enough.

By: Tammy

Tammy — Tue, 23 Aug 2016 17:55:00 +0000

I decided that uptravi was not for me at this time, I suppose my PAH is controlled well enough with my letairis and sildenafil .
I was in the hospital for a right heart cath,( my 4th ) with the results from that , my lung doctor felt I needed to start the FloLan therapy, I was transported to a different hospital where they were going to begin this new drug, I am not a fan of hospital stays and questioned if this was something I really needed, after a couple of days I decided to leave against medical advice, and about a month later, my doctor recommended the uptravi. I started with one pill in the morning and one at night , had the nurse come to my home after the first week , I had slight headache , a little sore muscles but nothing I couldn’t handle, the second and third weeks became really bad and all I could do is lay in bed in pain, depressed and frustrated , I had a couple of percocets 5 mg , from a vein procedure I recently had, and I took one , it helped , for the whole day and most the night , until it wore off. I was at 800 mg twice a day , the aches and pains all over got worse, I will not live life in bed, miserable from head to toe, I called my nurse told her I could not tolerate this, and I stopped taking it and I feel fine, short of breath , but not in pain, I am hoping I never need to start this again, it was a horrible feeling , I am glad that it helps others , I just know it was not for me, YET.
Well wishes and thanks for taking time to care.

By: kara

kara — Fri, 19 Aug 2016 04:37:59 +0000

In reply to Tammy. That's awful, Tammy. Here's hoping you feel better soon. I'm at 1600mcg now and it's been really tough, but worth it because I do sometimes feel better when I don't feel terrible, if you know what I mean.

By: Tammy

Tammy — Thu, 18 Aug 2016 16:12:08 +0000

I ache all over , I take 600 mg uptravi in morning and 600 in the evening.
Every part if my body hurts , restless leg syndrome all over , I hate this , driving me crazy.
Thanks
Also take letaris 10
Sildenafil 20 mg 3 times a day

By: kara

kara — Sat, 30 Jul 2016 19:24:12 +0000

In reply to William Wall.

Hi William,

This is not a forum, it is just my own personal blog. But I’m happy to give you my insight.

I am now at 1400mcg Uptravi and ready to start 1600 on Monday. I wait a month after every up-titration because I experience very bad side effects that last for a couple of weeks. I get every side effect that is possible; limb/joint pain and headaches are the most bothersome. I get two type of headaches. One is, I suppose, what I would call a “normal” headache. Not crippling, just uncomfortable. I also have gotten way more migraines since starting Uptravi — usually one after each up-titration. I have not found any OTC meds that will help either kind of headache. Sleep helps the “normal” kind, and the migraines go away after 24-36 hours.

I encourage you to keep trying higher doses! The side effects seem to become tolerable after a few weeks, so maybe see if your doctor will let you wait a month each time, the way I do.

Good luck!

By: William Wall

William Wall — Sat, 30 Jul 2016 18:51:21 +0000

Hi,
I new to this forum, but I too have PAH. I was diagnosed around 2years ago by my Doctor at Duke. I have been doing well under the combo of Adcirca and Tyvaso. My 6 min walk has improved and my abnormal Right Side Heart is back to near normal. But like a lot of you, Tyvaso had a lung side effect that is nearly unbearable. The cough and lung irritation would take nearly a hour before you could get up and do anything. My Dr is now trying to switch me from Tyvaso to Uptravi. Up to 600 has gone well but now I am at 800, I am having the headache side effect( I think). In also came down with a sinus cold and that could be the source. The cold is much better but I still seem to have nagging headache in the sinus area. Those of you having headaches, is it like a sinus type headache?? What over the counter meds seem to work best?? I want to move on to higher doses and would like to know others experiences. I can sacrifice a Minor headache compared to the Tyvaso side effects. Do after some time, your headache get better?? Let me know your experiences and I will share mine,
Thanks

By: kara

kara — Sat, 28 May 2016 23:21:24 +0000

Hi Linda,

I’m up to 1000mcg and will go up to 1200 in a couple of weeks. Ever since 600 I’ve been waiting about a month between up-titrations because the side effects are bad and I like to feel good for a week or two before I increase again.

I’ve got joint pain now (knees and hands, ouch, and aspercreme doesn’t help), and facial flushing in addition to all the other stuff (see some of my more recent blog posts).

I haven’t noticed any benefits yet but I’m glad to hear that you’re seeing some at those higher doses, so maybe I’ll get there someday and also feel better!

Yep I’m determined to make Uptravi work for me. I’m never going back to Tyvaso and I’m not eager for IV meds.

You hang in there, too! :)

By: linda

linda — Sat, 28 May 2016 18:37:40 +0000

Hi. Just found this. I too have PAH and my condition deteriorated rapidly from January through March. Then I started sildenafil + opsumit+ uptravi. I have titrated up to 1400 and will go up to 1600 tomorrow. It has made a really fantastic difference. Side effects: for me the gastro-intestinal set in days 2-4 for each upgrade, then abated. Unpleasant. Now it’s continual high back and lower hip aches, so much so that I can hardly sit on a chair for very long. Thanks for the reference to Aspercreme. So hang in there, it’s better than the other options.

By: kara

kara — Fri, 06 May 2016 06:16:15 +0000

Thanks for the tip, Rayna. I’ve got a strange sore shoulder now so I’ll try Aspercreme. I’ve been on 800 for almost a month now. I was having terrible headaches so decided to delay up-titration for a while. Probably going up to 1000 on Monday… wish me luck.