Comments on: Tyvaso

By: kara

kara — Mon, 09 Feb 2015 01:42:28 +0000

In reply to kiki. Hmm, you know, I've never noticed it HELPING any of my symptoms. As far as I know it's just slowing down my decline. I hope it helps you, though! Good luck :)

By: kiki

kiki — Mon, 09 Feb 2015 01:38:49 +0000

I started 5 days ago and am wondering when I’ll start being able to breathe better. Side effects aren’t bad at all but breathing and oxygen saturation isn’t better at all. The CVS pharmacist said it can take 2 to 3 months and the CVS nurse said I would maybe feel a difference in 2 weeks. I’m so confused!!! Help!

By: kara

kara — Fri, 31 Jan 2014 22:13:43 +0000

Hi William,

I’m glad you’re doing well. Over time as my condition worsens I’ve had to increase my dose — I’m up to 15 breaths four times a day now. The coughing is still annoying but nowhere near as bad as when I first started.

Take care!

By: William

William — Fri, 31 Jan 2014 17:48:45 +0000

It’s been 7 months now on Tyvaso after benig diagnosed with PHT a little over 13 months ago. This was the first PHT contact that I’ve attempted on the internet (slow starter). I started with 3 puffs/4 times and went right on to 9 puffs in a few weeks. Headaches were regular so I took pain relief.

I can go to the mailbox out on the road without oxygen if I pace myself, but oxygen absortion drops rather low and halfway back I have to stop and regroup. I think that I feel better though. Appetite really diminished for quite a while, but is almost back to normal, although right after dosage many foods still aren’t appealing.
I lost 10 lbs. and gained it back. I do cough after taking it, but it goes away. Also wease a lot when reclining in bed after last PM dosage.

I didn’t realize that the pump could tip over without an issue when plugged though. I’m 67 with a very thick head of hair which is suddenly thinning quickly and wonder about Tyvaso. I also take Adcirca though for PHT.

Went into Boston last week and had a pretty good walk test and Echo. Heart is holding rather steady. The whole experience is somewhat difficult for me to judge myself though as to “feeling better”. Maybe I’m feeling a lot better than I would have without Tyvaso.

Thanks for the posting!

By: Marsha

Marsha — Thu, 19 Sep 2013 02:22:50 +0000

I’ve been on Tyvaso for 5 days. I am feeling much better and very encouraged!
Thanks for the good information.
Marsha

By: willie

willie — Thu, 06 Jun 2013 01:22:34 +0000

just started it /m/62/

By: kara

kara — Sun, 24 Jul 2011 05:51:12 +0000

Aww, thanks Jennifer — glad you’re enjoying the stories! I’ve been listening to Just-So lately, too. Those always stories remind me of my big sister Kathy, who read them to me when I was little and who commented here today, too :)

Hi Kathy! They list coughing as one of the many possible side effects. But they don’t actually mention “coughing so hard you get dry heaves and your brain bangs around inside your skull and you feel like you might die”. Heh. They also say it can take eight weeks for the side effects to settle down, so of course I figured I’d probably feel THAT bad for eight weeks. So I’m glad it’s easing up already. xoxox!

By: Jennifer in MamaLand

Jennifer in MamaLand — Sun, 24 Jul 2011 05:41:09 +0000

Just want to say – from an anonymous stranger – that I’m happy you’re getting a handle on the breathing situation. You don’t know us, but we have been enjoying some of your audiobooks (especially the Just So Stories and Five Children and It) and appreciate your reading skill very much.

By: Kathy

Kathy — Sun, 24 Jul 2011 00:27:05 +0000

Good to see this, Kara. I was just sitting here thinking about you and wondering if I should email you for an update, and lo and behold….you had a detailed blog about how it’s going. Gosh-did you realize there would be an initiation process like that? I’m glad you’re feeling better now and even doing some cooking!

Hugs, kisses and lots of love.