Do You Have Experience With Tyvaso?

[jen-cueva]

@carol-alexander, can you ask your questions about Tyvaso here? LMK if you are having issues posting to this. If you reply to this, it should share here, not as an “update.”

I hope that today you re doing better with the Tyvaso. If not, have you notified your PH team?

[-Sue-]

I have tried to reply to the Tyvaso DPI forum without success. After writing a rather long reply on my 1-1/2 years experience with Tyvaso, I get an error.

[jen-cueva]

Once again, I wanted to ask about those who have had experience with Tyvaso. Anyone here care to share their experience?

@carol-alexander and @jo-ann-white, anything new with y’all and Tyvaso? I have not seen any updates from other of you in some time.

@cdvol3gmail-com also wanted to ask about anyone taking Tyvaso. From the few PHriends that have used Tyvaso, their main concerns were timing throughout the day and sore throat and cough. I am hoping some members here can share a bit more.

[Jo Ann white]

I love my tyvaso except that it is very time consuming and can really break my train of thought when working to have to stop, eat something and dose, then sit quietly for a few minutes. However, everyone thinks it has helped me. I have more energy and had the best 6 minute walk time in almost two years. I also take anagrelide for a platelet disorder and tadalafil for idiopathic pah, which I don’t take at the same time as the tyvaso. The tyvaso timing can be difficult. I am very comfortable going 4 1/2 to 5 hours between doses but that makes for a long day with 4 doses. I am on 9 puffs four times a day and was told if I varied very much from dose schedule I might have muscle aches and rapid heart beats I had when first titering up…and that a dose lasts only four hours and it would do me no good while I was asleep! I have not had a problem with sore throat or cough but was told inhale should not be deep, just brief and shallow, not to swallow saliva while dosing, and to eat something first (peanut butter crackers and rice pudding both work well for me when it isn’t mealtime). I start in the morning with 1/2 a toasted buttered plain bagel and a swallow of water. I also make sure to do 1/2 hour aerobic exercise daily on the exercise bike. I am on 5-6 liters of oxygen 24/7 abd was diagnosed two years ago after about three years of shortness of breath.

[cindy-bee]

Thank you so much for your input. I just seen your post. But after reading it I do believe I made the right decision to go with the Winrevier. The doseing schedule was my biggest concern. I’m glad it has helped you. And you have the ethical habits to maintain the dose regimen. That is a SE in itself. Time management has never been one of strong suits.

Again, thank you for replying!

Breathe On,

Cindy

[Jo Ann white]

Because my blood pressure has always been low normal drs worry about left pressure going too low when reducing right pressure. So they had me titration up starting at one puff four times daily and increasing one puff each week. Nurse came and did vitals first time I increased the dose until I got up to nine. I was told to sit quietly for 1/2 hour after dosing. Now I sit for only a few minutes after dosing. Just wait a bit for anything strenuous. Have been on it for 10 months now. Nurse told me she had one patient who has been on it for 7 1/2 years so far.

[jen-cueva]

Hi @jo-ann-white, please accept my apologies as I missed this information somehow. I am sorry that this reply is not quick as it should have been.

Thank you for sharing your experience with Tyvaso. So, now it must be over a year for you, huh? Are you still seeing improvements with it? Wow, 7 years, so cool. I hope that you continue to do well with it. How is your BP?

@wheeldog recently stated his Tyvaso and is happy to answer questions about Tyvaso, too. Roger, @jo-ann-white, may be an excellent person to communicate with, too, about Tyvaso.

[Colleen]

@carol-alexander is on the Tyvaso powder now and Tyvaso is wondering if anyone else is on it and what they think of it? Remember to tag Carol if you respond. Thank you!

[Roger Bliss]

Hmmmmm first time I noticed this thread. I was on Tyvaso for close to a year. Didn’t help….actually gave me a cough. The doctor at UCSD took me off it last March because she questioned if I have PAH. Seems as PAH is mostly women in their 30’s to 60’s. I didn’t find any changes after I got off it.

I found it a pain to deal with………..BUT……..if it actually did help, I would have stayed with it.

[jen-cueva]

Hi @wheeldog, I’m happy to see you pop in and grateful that you’re still feeling OK without the Tyvaso. @carol-alexander was asking specifically about the new Tyvaso powder that came out. Many have done well on it. She is experiencing more SOB. She was on the Tyvaso like you were prior.

Yes, a cough is one of the top side effects I have heard from those using Tyvaso.

How are you and Mary Ellen doing?

[Jo Ann white]

I have now been on Tyvaso for more than two years, a dam up to 12 puffs four times daily. I have not had luck with other inhalant meds so prefer to remain on the nebulizer even if it is time consuming. I have never had a cough or sore throat but have always been told to take only shallow  breath on the inhale and not to swallow after an inhale.  I don’t get rapid heartbeats ir an occasional skipped beat unless I take other meds or eat a large meal or get very stressed out just before I dose. Then I get rapid heartbeats and high pulse rate. I think doing the exercise bike regularly  is also important and staying calm and not rushing around. I do have sone diarrhea (Imodium helps) and sone joint pain if I neglect the exercise bike but am doing very well and stabilized for a long time now. Pah clinic says I am stable and  now has me coming in every six months now instead of every three. Apart from Tyvaso and anagrelide for a preexisting platelet disorder I am in no pah meds. Opsummit and three steroid inhalers did not work. Am on 4-5l oxygen 24/7 with 6l at night. Sterile saline mist for congestion and drops for dry eyes plus LASIX and potassium every other day and daily allopurinol for gout. Have probably had pah for five years and was diagnosed and out on oxygen three years ago.

[Jane]

I have been on Tyvaso for about 1 1/2 years and now hope to go on the powdered form. I am having trouble getting my insurance to tell me the cost. I am on Medicare and have Humana for Part D. I suspect there are huge co-pays. I am taking 12 breaths now and have to take it easy for at least 1/2 hour after doses.

 

[Colleen]

@janenlnhtds-net it’s ridiculous that insurance is giving you the run around like that. As if having PH isn’t stressful enough. I’m so sorry! Maybe talk to your doctor’s office and ask if there is anything they can do to help move insurance along. They might also have advice on financial assistance to help cover the medication costs.

[jen-cueva]

Hi @janenlnhtds-net, so frustrating and exhausting to deal with. I’m sorry about the insurance dilemma. That can be frustrating and exhausting.

@colleensteele offers some excellent suggestions. I am also attaching a link to a copay assistance program for Tyvaso and Tyvaso DPI. Were you on one or currently with Tyvaso?
Tyvaso/Tyvaso DPI Cost Assistance

When you contact your PH doctor, ask the nurse about this program and any others you may qualify for. Please do keep us posted.

[Jo Ann white]

I also think it is likely to ne very pricey and since I have had no luck with several other inhaled meds I am afraid it switch, even if it would. Be more convenient

jo ann

[jen-cueva]

Hi @jo-ann-white, it will be pricey since it’s a new treatment. But there are financial assistance programs out there that you may qualify for. I’m sorry that other inhaled meds have not worked well for you. Because this is a powder form, it may be something you do better with. It’s worth asking your PH team. The convenience factor alone may be worth a try.

Let us know if you do decide to talk with your PH team.

[Colleen]

A new member @cindy-bee is looking for some information and support. I hope those of you who are or Tyvaso or have previous experience will offer your wisdom.

I am not new to PH, however, this is the first time I have joined a forum. My name is Cindy Beesinger I was diagnosed with PH 04/2012. I have been pretty much stable on Letairis, Adcirca, and Spironolactone. My last heart cath came back showing my pulmonary pressures have significantly increased. My doctor is going to start me on Tyvaso. I am hopeful that there may be someone who is currently using this medication that can give me a heads up on the side effects they have experienced and if they believe Tyvaso has helped them.

Thanks,

Cindy

[cindy-bee]

Thanks for your help. However, it doesn’t appear there are many folks using Tyvaso as of recent. I am curious as of why? Most of the posts are 3-5 years old using this medicine.

[Linda Williams]

Hello there. I have been taking Tyvaso DPI for about 2 yrs. I take 48 4x daily. The side effects at first were flu like symptoms. It took a long time to get to 48. I spent a year on the couch feeling terrible. I also take Adempas. The first 4 hours of the day are not pleasant, still. Then I rally for some reason. I used to choke on Tyvaso til I adjusted the angle and slowed the inhale. I suck cough drops when my throat is irritated. And rest alot.

[Colleen]

@cindy-bee More members have responded, and I hope the experience they offer helps in some way. Please feel free to ask more questions if you have any.

[celticheart]

Hi, Tried Tyvaso a few years ago to replace Uptravi…but it didn’t workout fluid retention is a side effect enemy for me also didnt help with the headaches either and it all it’s part is an environmental nightmare 😀 as far as I’m concerned so overall I’ve a very low opinion of this drug

[cindy-bee]

Thanks for your input celticheart! I appreciate it . I am reservations about starting it. It seems that Winrevair seems a better option and less time consuming.

[Colleen]

Hi @cindy-bee ! I was thinking of you and wondering if you have any updates and if you need our support in any way?

[cindy-bee]

Thank you for asking! I really do appreciate that.

I completed my fourth injection on the 23rd. So far all my blood work has come back good except for the “ immature Granulocytes” which have risen from 0.02 to 1.7. Not for sure if it is the Winrevair or something else causing the uptick in elevation. However, I feel great, I seem to have more energy. My O2 levels have stayed about the same. Which, I consider a good thing. Stable beats decline.

As far as side effects go, I continue to have a slight headache. I tend to have mild diarrhea the day of the injection. All in all I am content with the therapy. It only takes 10-15 minutes of my time every three weeks. That I like most of all!

Breathe On,

Cindy

[Colleen]

@cindy-bee Reading your update made me so happy! “Stable is better than decline” has always been my motto in regard to my son! Wow, this is great news! I will continue praying that this continues to work well for you!

[Carol]

Yes I am on Tyvaso I have been on it for quite a while I have a problem with coughing but I couldn’t get around without it Iam on the 32 smallest dose. There is a new med. coming out I forget the name does anyone know anything about it?

[mark-acosta]

Hello – I am new to this Forum and I am 72 years old with Group 3 lung disease and PAH. I have 1.5 years experience with Tyvaso and I am a PharmD with many years of front-line medical/clinical experience. So I am happy to answer any questions including technical ones.

I find that Tyvaso improves my QOL of daily living; I would now be very limited in activity without out it, which is not good since am pretty much house-bound on 10L O2. The inconvenience of administration is worth the effort and some coughing while doing the inhalations is only side effect.

I wish it would last longer! I only get about 2hr of noticeable effect after each 12-puff inhalation set so I must plan timing for activity very carefully.

Mark-A

[Colleen]

@mark-acosta It is very helpful to have someone in the forums with both personal (I’m sorry that you do) and professional experience with treatments. Thank you for jumping in and offering information to other members.