- This topic has 21 replies, 11 voices, and was last updated 4 months, 3 weeks ago by Anonymous.
February 11, 2021 at 12:12 pm #29074
We have discussed most of the PH treatments in many topics throughout the forums. But, we wanted to make specific posts about each treatment. This is so that we only discuss this specific treatment here. We will do this for each treatment so you can easily access this information.
Today we will start with Letairis (ambrisentan) Letairis is and oral medication, It is an Endothelin Receptor Antagonists (ERAs). ERAs prevent blood vessels from narrowing. It was FDA approved in June 2007. Letairis is a once per day pill.
The most common side effects are swelling of hands, legs, feet, stuffy nose or nasal congestion, hot flashes or flushing in the face, headache, cough, upper respiratory infection, and low blood counts (anemia). Females who take this must have a pregnancy test before starting and each month before refilling this medication.
They do have a patient assistance program to help with the cost of this medication, called LEAP.
I was on Letairis in the past in combination with Revatio. I had stop mine because of the increased swelling. The monthly pregnancy tests were annoying. A few times, I could not make it to the lab; my PH team had to call and override that to get my refill.
If you or a loved one has experience with Letairis, please share your experience here. Was this a first treatment? Let others know the pros and cons you have about this treatment.
February 11, 2021 at 1:55 pm #29081
@jenc addressing treatments individually is such a good idea. I’m sure many will appreciate that you thought of doing this.
Cullen was on Letairis for quite a while, in addition to other treatments. To be honest, he takes so many transplant meds that it’s hard to remember everything about what he took when he had PH. I think he was taken off of letairis eventually and it might have been for the reasons you mentioned. But I do know he was on it for quite a while.
February 11, 2021 at 3:09 pm #29085Carol VolckmannParticipant
Again, great topic to bring up individual medications to help people know what is out there for PH and how they have handled the meds. Thanks Jen. I have been on Letairis and now the generic Amberstatin. Letairis is one of the 3 major meds for my PAH. I have tolerated well – I do have stuffy nose, flushing and some swelling of my hands but nothing I cannot tolerate. I am not sure what is causing the side effects,it could be from the Remodulin or Adcirca or from my Sclaraderma. I do know that the combo is working for me and the side effects I have been able to handle. Thanks again.
February 12, 2021 at 11:26 am #29093
Hi @cdvol3gmail-com, I am happy that this is one of your combo meds that help your PH with tolerable side effects. I hope and pray that this combo keeps you going and working well for you.
Like, @mainegal, my swelling was so bad, and of course, my kidney disease does not like extra diuretics. You are not alone in that. I think you had a kidney procedure last year, Sally, right?
Thank you both for sharing your experience.
February 11, 2021 at 3:58 pm #29086Sally HoffmanParticipant
Hi, I have taken Ambristentan. I, too, had to go off because of swelling. I was so swollen that I had difficulty breathing. I needed much too much diuretic, which kicked up my kidney problems.
Really appreciate hearing about various meds. Thank you.
February 12, 2021 at 11:23 am #29092
Thanks, @colleensteele. I bet you have so many med names in your head; I don’t expect you to know the details. I have been on most of the oral meds, so I often have difficulty remembering the dates as to when I stopped one to transition to the next. Now, with TX meds, I can only imagine how difficult this can be,
February 14, 2021 at 10:31 am #29103Susi SteppinsParticipant
This is a great topic.
I am still new to a lot of this and as i go through the steps it is nice to be able to read about other’s experiences.
I started taking Ambrisentan 2 weeks ago.
I believe I am tolerating it well so far.
I have noticed a bit of swelling, which I have trouble with already.
I finally felt like I was getting it under control and now it is back.
I have read such good things about this medication though I am really hoping that I am able to get it under control.
I am taking this medication along with 10 mg of Tadalifil every day.
Amongst quite a few other medications I am on.
February 14, 2021 at 11:19 am #29105
I am on amberstanten generic letaris. I’ve been on it for close to 3 years. I was not able to handle the ad circa that was supposed to go with it so I was on it by itself up until about a month ago and then they put me with or rent a tram also. My side effects from the terrace have become manageable but I really really get super stuffy noses between the oxygen and the letourist to the point where I can’t breathe out of my nose so I go around with the sore throat all the time from breathing out of my mouth so much that’s the only annoyance but I pretty much have gotten used to it I use Flonase a lot. I’ve had some rapid onset shortness of breath started about 6 months ago. Now hearing about the swelling and the individual who had to go off of it cuz they couldn’t had shortness of breath I’m wondering if that could be a cause of mine because nobody can figure anything out. not that I can get any medical care around here anyways it’s the most biggest joke this clinic I’m going to with all these pulmonary doctors. That’s a whole other topic of. I like the idea of discussing each medication separately good idea
February 14, 2021 at 11:21 am #29106
Wow maybe I should proofread my messages better before I hit the send or submit funny haha LOL cuz my previous message had quite a few typos especially around the medication names sorry guys and gals I’ll try to proofread better.
February 14, 2021 at 11:24 am #29107
Also I wanted to share briefly that I do know that the letaris has a program for people who are uninsured or underinsured because that’s how I started out on it before I got insurance. so they do have programs that help with the cost. it is a very very expensive medication it’s $6,000 a month for me to be on it. But it’s what works I guess.
February 14, 2021 at 11:49 am #29108Carol VolckmannParticipant
Kristine, have you tried TAF The Assistance Fund. They have grants to cover co-pays for PH meds like Letairis, Adcirca etc. Very helpful
Good luck and lots of hugs.
February 14, 2021 at 10:04 pm #29112
Sally, I am really interested in learning more about your breathing issues relating to the Letaris (Amberstantin). Most curious how was your breathing issues attributed to the medicine?
February 15, 2021 at 4:58 pm #29123
Just want to give a shout out to @jenc who came up with the idea of starting individual topics for the many PH treatments available. Judging by the response to this Letairis post, tackling them one at a time will be helpful to our members. It will also be a great way for the newly diagnosed to educate themselves about what is available and then discuss it with their doctors.
February 16, 2021 at 2:26 pm #29133Peter G PierceParticipant
Was on Letairis for about 18 months. Nasal congestion was so bad that we discontinued Replaced with Opsumit with no side effects.
February 16, 2021 at 3:30 pm #29138Sally HoffmanParticipant
Hi Kristine, My breathing problem wasn’t directly from the Amrisentan. The breathing problem was from the fluid retention. I was taken off Ambrisentan and put on Lasix and Spirolactone (high doses) until the fluid was gone. Now on Uptravi 1400 2x per day and Lasix 40 mg 1x per day. In September I had a stent placed in my left renal artery. Dramatic kidney improvement. Be sure to let your doctor know if you are having breathing problems from any cause. That’s what this disease is all about. There are other meds to try.
February 17, 2021 at 4:15 am #29143
Paul thank you for commenting and sharing with me I appreciate it hope you have a good day.
February 18, 2021 at 7:11 pm #29158Aunt LizzieParticipant
I’ve been on ambrisentan since 2013 and thankfully have not experienced any obvious side-effects, which is amazing for me. I’ve had so many drugs prescribed that have bad side-effects, but this one works well for me. I was given bosentan first, but that upset my liver, which was unfortunate because it had made me feel so much better almost immediately.
March 23, 2021 at 9:20 pm #29516Roger BlissParticipant
I started taking it. 3 days was enough for me. My feet swelled up so bad I couldn’t get my shoes/boots on. Got real short of breath, had a bad cough, and was so congested at night I couldn’t get any sleep.
Next they are going to try Bosentan.
March 25, 2021 at 7:40 pm #29540Jacquelynn Segars UhlParticipant
I begin taking Letairis 2 years ago, 10 mg once a day. (I also take Adempas 2.5 mg, 3 x per day) for my CTEPH pulmonary hypertension. The Assistance Fund helps with the tremendous expense of these meds.
I have suffered no side effects and I am able to exercise @ Gym and ride an
E Bike almost daily. I had open heart/lung surgery @ Duke May 2013 to remove the blood clots in both organs. I had already suffered permanent lung damage @ time of surgery.
I realize how fortunate I am for care I continue to receive from Duke and my local Drs.
My life is full & my energy has returned. I do watch my diet and rest when I get tired.
I hope the best for all who suffer from the many forms of PH.
March 27, 2021 at 11:51 pm #29556
I have been wondering this for a while and I don’t know anywhere to ask this question. Can any member start a new topic discussion?what if I wanted to say something about something that’s not open as a topic of discussion, and if I am allowed to start a topic on something how do you go about doing it?
March 28, 2021 at 12:25 am #29558
April 23, 2021 at 3:59 am #29858AnonymousInactive
Yes. I use Generic Version – Its cool for me!
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