Tagged: IPF, lung disease, medications, PF, tyvaso
- This topic has 20 replies, 12 voices, and was last updated 4 months, 1 week ago by Christos Manitaras.
April 22, 2021 at 9:14 pm #28150
Just a quick post here tonight as I’ve not been sleeping well this week and am quite tired. Does anyone else go through periods of disrupted sleep or vivid dreams that wake you up through the night? That is a topic for another forum post though, not tonight…
Has anyone had a conversation with their doctor about Tyvaso for use in IPF patients? This drug has been approved for use in patients with pulmonary hypertension, and many of us with IPF also have some form of hypertension due to the stress on our hearts from malfunctioning lungs.
Recently, a friend of mine was speaking to a very prominent pulmonary doctor in NY who indicated it could be effective in IPF-only patients and that trials are underway studying this. It does sound like it might have side effects though, so I wanted to open up this platform for discussion by asking if any patients have spoken to their doctor about Tyvaso, or if he/she has brought it up to you as an IPF patient.
If you’ve tried Tyvaso, as a patient with PH and IPF, how is it going for you? Have you had any side effects with it?
We’d love to hear from you!
April 27, 2021 at 2:33 pm #28169Donald Salzberg MDParticipant
Tyvaso also came across my radar. It’s inhaled 4 times a day 4 hours apart (treatment takes 2-5 minutes). It was approved for PAH (Pulmonary Artery Hypertension) initially and they added it for patients with PAH associated with IPF. I do see it is NOT covered under Medicare and GoodRx has it listed as a $750 co-pay so that’s $9000 per year out of pocket. Similar to Medicare co-pay cost of OFEV. I plan to see my pulmonologist next week and will ask. Will also contact Yale to see if they’re doing any trials. Love the concept of getting meds directly into the lungs which would ⬇️ Side effects systemically. I’m grateful I developed IPF now instead of 10 years ago.
Don Salzberg MD
May 5, 2021 at 8:41 am #28230
Thanks so much for writing and sharing your thoughts with us on Tyvaso. While I don’t have a medical background to back this up, or any scientific proof; I just have a feeling that an inhaled substance is going to be what ultimately helps all of us with this awful lung disease. Just a sneaking suspicion!
When you’ve had a chance to speak with your doctor about Tyvaso, and if you’re comfortable doing so, please report back on what he/she thinks of it for IPF specifically, as opposed to PAH and IPF. Take care and keep in touch!
October 22, 2022 at 6:43 am #33368Chris O’HanlonParticipant
as I mentioned before I am new to the sight and just selected for the Tyvaso trial, I don’t know if I have the drug or placebo. This is my 2nd week and I am up to 6 puffs 4 times a day, I feel good in the mornings and I get my walks and swims in then. While walking I am on my oxygen pack, obviously not with swimming. I really can’t say I have side affects but I will say that I am breathing better and I have started walking farther!
I try to get most of my chores done in the morning and early afternoon because I run out of gas in the afternoon. In the early evening I walk again, make dinner and fall into bed exhausted.
I guess what I am saying is if I am on the placebo I will take it because it really helps me get through my days.
April 27, 2021 at 9:21 pm #28177Ben RobinsonParticipant
I am on Tyvaso now. My good insurance luckily covers it which i also work hard for. It is for PH Type 3 Lungs where the capillaries and small veins and arteries have narrowed It is a vasolidator which expands these narrowed blood flow corridors in the lungs so that perhaps they may recover after the blood flow fills back in them. PH results from this poor blood flow and is as big a reason for transplantation as bad lungs. PH is miserable especially the shortness of breath and eats up your heart. The lungs are very smart organs and react to poor oxygen areas with vaso constriction reducing the blood flow even further and do not process carbon monoxide either causing bronchospasms. They also send messages to the heart to beat faster causing SVT and arrhythmia. I have a side effect of raw exposed lung burning and causing inflammation causing some issues. I also use it as a tool for the PH and it works but if i get inflammation my saturation drops. I am an unusual case. I am not sure everyone would have the burn. I am not sure that it would be prescribed to someone without having PH which is only verified by right heart catheritization. Probably applicable to more advanced stage patients to help get them to lung transplant. Like me. Best of Luck and I hope this helps.
May 5, 2021 at 8:39 am #28229
Thank you for sharing your experience with Tyvaso! I don’t know anyone who is personally on it, so hearing these stories from our forum members is really helpful. That said, I’m sorry you’re experiencing the lung burning side effect and inflammation, that must be really unpleasant. Are you on the Tyvaso for just PH or did your doctor suspect it might also be helpful for your IPF? I’m curious if he/she had any suspicions as to whether or not it would help for the IPF too.
Take good care and thanks again for sharing.
May 5, 2021 at 5:48 pm #28233Earl RobinsonParticipant
I am 82 and also on Tyvaso for the past 2 + months. Started at 3 breaths 4 times a day, 4 hours apart and now I’m up to 18 breaths each time. Causes some coughing during the session but nothing I cannot tolerate. No known side affects at this time. I also take OFEV 100mg two times a day with food.
I’ve been diagnosed with IPF and PAH, slow to move around but with O2 24/7, 8L day and 6L night I seem to be stable and possibly some slight improvement. My insurance didn’t help much at all but I was able to get financial assistance from the 2 great companies that make these meds. I would encourage to contact the companies and see if you can qualify for assistance. For OFEV contact B.I. Cares. CVS rep. was able to help me with the Tyvaso.
May 8, 2021 at 9:09 am #28267
Thank you so much for taking the time to share this information with us! I have no doubt it will help others, and I’m really glad to hear you don’t have any side effects from the Tyvaso or Ofev. Take good care, Char.
April 28, 2021 at 9:27 am #28182Pete BesioParticipant
I too have seen the Tyvaso information and it is on my radar too. It looks like there is a clinical trial evaluating the efficacy of Tyvaso in treating IPF about to start. As I think you have previously noted, your probably not eligible to participate, as age is one of the criteria for exclusion. The drug named in the trial is Trepostinil, a web search indicates Tyvaso is the trade name for it. Info can be found:
The side effects don’t look so cheery, and the drug interactions include a lot of things I bet most of us are on (blood pressure meds, blood thinners). This page might prove interesting:
Due to the discontinuation of the Galapagos study for patients on OFEV or Esbriet, I am currently evaluating trials to participate in, and I am looking into this one. I will keep you posted on what I find out.
Best to everyone,
May 5, 2021 at 8:37 am #28228
Thanks so much for sharing this information regarding Tyvaso. I wouldn’t qualify for the trial, you’re correct, as the age would disqualify me but I’ve been keeping an eye on it for the many IPF patients I love. It looks as though it is being evaluated for patients with IPF-only whereas it was previously used for those who had PAH and IPF. If you end up enrolling it and are comfortable doing so, please let us know how it goes. As always, I really appreciate hearing from you and about your thoughts on this topic!
April 29, 2021 at 4:07 pm #28197
No Tyvasco experience but I inhale liquid Acetylcysteine twice a day and take Esbriet. Noticeably less mucous and relatively stable. ?Recommended to me by Dr David Schwartz in Denver who is a top IPF expert.
April 30, 2021 at 12:49 pm #28202Cindy SearsParticipant
Hi Rob, Are you in a trial? My doctor just talked to me about getting into a trial with NAC.
April 30, 2021 at 3:14 pm #28203
I’m not in a trial but Dr Schwartz has a group in Denver inhaling Acetylcysteine(NAC) and got my pulmonologist in Canada on board. I’ve been inhaling 8ml by nebulizer for 10 minutes twice a day for 2 years. My lung congestion is greatly improved and if that is an issue for you I would recommend it.
April 30, 2021 at 3:35 pm #28204sally williamsParticipant
Rob, is Dr Schwartz at National Jewish? I see a Michael D. Schwartz listed..same man?
May 1, 2021 at 5:16 am #28207
Dr David Schwartz at University of Colorado Medicine.
May 11, 2021 at 2:28 pm #28278Ben RobinsonParticipant
Tyvaso inhaler is merely a Vasolidator and is for PH Type 3 only and has no affect on PF itself but will widen the capillaries in your alveolar packages damaged by the PF improving blood flow. Don’t waste your time thinking it is a PF cure or something. I doubt that a prudent doctor would even prescribe it for anything other than PH. PAH is caused by calcification or cholesterol plague in the arteries which is a different type than Type 3 Lungs. These types are often confused causing misdiagnosis.
February 23, 2022 at 1:24 pm #31152Dan AndrisoParticipant
Been reading the remarks on the Tyvaso Forum and have a few questions that hopefully someone can answer. I was diagnosed with IPF in 2016 and shortly after started OFEV, It appears to be slowing down the progress of IPF but I also developed PH. I’m on oxygen 24/7 and have a constantly dry nose to confirm. I started Tyvaso a few years ago and it definitely helps in breathing. However, he part that drive me crazy, is the amount of mucus that I expectorate mostly in the morning and sometimes during the day. Anybody find a way to help eliminate or at least slow that down? It’s embarrassing that my wife has to hear my constantly clear my throat & nasal passages every morning.
BTW, there’s more to my story that I’ll leave for another day.
March 4, 2022 at 1:44 pm #31238Dan AndrisoParticipant
Been reading the remarks on Tyvaso and its cost was mentioned. I suspect you know the cost is $29,800 per month. Depending on your insurance, it will determine the co-pay which in any case should be a high number. However, although I get most of my health care through Medicare, I am also a veteran and use the VA health care system, which supplies me with the Tyvaso plus OFEV,
I’ve been taking Tyvaso for about a year 9 breaths, 4 times a day. Sometimes I cough and other times I don’t Frustrating! It helps my breathing as well considering I also have PH which is expected when you have IPF.
The downside is exercise is very difficult so not much is done in that respect. Even though Tyvaso helps in breathing, I still can’t walk too far before I have to stop and catch my breath. If I try to build up my strength by walking, I get out of breath and have to sit down. So, it’s hard to do anything physical. However, I keep trying.
More to come.
February 26, 2022 at 8:49 am #31195Paul CareyParticipant
I have been enrolled in the double-blind trial of Tyvaso for IPF since early January.
The medication (or placebo, as the case may be) is received via a nebulizer that delivers a programmed number of metered doses, four times a day. The titration process begins with inhalation of 3 measured doses (4x daily), then ramps up an additional dose each week, until full dosage of 12 (4x daily) is reached. I am currently taking 9 doses (breaths) 4x daily. The time for any participant to complete their trial is approximately one year.
The last time I checked, there were 18 US locations where this trial is open. I live in a very rural part of Virginia, approximately two hours from the Richmond trial location.
To date, I have experienced no ill effects in this trial.
The trial is closely monitored with ongoing Pulmonary Function tests and other support, including regular examinations and weekly telephone discussions with an assigned nurse.
Of course, we each wish that our participation in this – or any trial – might result in a “home run”!!
Whatever the outcome, for me personally, or this trial in particular, I hasten to note that by our simple willingness to participate, we add real value to this important quest:
Whether or not Tyvaso scores a “breakthrough”, our participation at the very least serves to (paraphrasing Thomas Edison) successfully discover something that doesn’t work!
NOTHING, therefore, in this quest shall “go to waste”!!
February 27, 2022 at 9:36 pm #31202Harletta CarathelParticipant
Many of you seem to know more about Tyvaso than I, but one of my doctors a Jewish National is seeking help financially for me to be on it.
After PH testing with my cardiologist, he did not think my PH was at the level to warrant any medication , but the doctor at Jewish is of a different view, so that is confusing to me.
I take Ofev 150.
I am not excited about the Tyvaso as it appears to be very scheduled, and if it cause more coughing, Yipes!
I am somewhat discouraged when I read of possible treatments on the horizon and then learn it could be 3 years or so before they are approved.
Dan probably too elementary but simple saline solution nose drops help my dryness, but I also have a runny nose shortly after rising for about two-hours, I use Ipratppium bromide for that.
I am always open to ideas from anyone on how to improve the conditions and annoyances we share.
I love your dog Rob. We are beagle lovers.
March 3, 2022 at 7:33 pm #31234Phil RyanParticipant
I have both PAH and IPF and am on Esbriet and Tyvaso. Both for a little over 2 years. I have no material side affects, and both seem to be slowing the deterioration; however, my supplemental oxygen needs seem to be climbing steadily. I take 12 puffs of Tyvaso per session. I will underline that Tyvaso is extremely expensive although luckily my insurance covers except for $2,000 annual copay.
There are reportedly ways to get assistance for payments, but have no info on that.
November 20, 2022 at 4:04 am #33621Christos ManitarasParticipant
My wife has PF due to systematic sclerosis (diffused sclerodrma) since April 2018. She takes OFEV 150mg x 2 and Cellcept 500mg x 4 daily. She is annually checked with RHC (right heart cathetirization). At the last test (05/2022) results show that PAH has initiated (25mmHg and resistance >3.2) . She started treatment using volibris initially and macitentan later- due to side effects- and tadalafil. Recently she proceeded to heart ultrasound and the results did not show any improvement. Due to some side effects and the “not good results” of ultrasound, reumatologist and pulmonogist agreed (concerning the PAH) to change to Tyvaso. Tyvaso has not gain an approval in EU yet. However they will provide it under specific conditions as it approved from FDA. I will come back after a few months.
All data provided from members of the forum are very useful and interesting!
In Greece the medical social system provides orphan and costly drugs free of charge under specific prescription.
Best regards to all
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