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Do You Have Experience Taking Tracleer (Bosentan)?
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 discuss Tracleer (bosentan). Tracleer is an oral medication; It’s an Endothelin Receptor Antagonist (ERAs). ERAs prevent blood vessels from narrowing. It was FDA-approved in November 2001. Tracleer is usually taken twice per day, once in the morning and once at night.
Some common side effects are fluid retention, headache, flushing of the skin, joint pain, finding, an upper respiratory infection: nasal congestion, low blood count(anemia), and liver damage. Females who are within child0bearing age will need a monthly pregnancy test.
Tracleer does off a program to help assist with insurance approvals, and copay assistance, etc.
This is one oral med that I have not been on. Many were on this when I was diagnosed. It seems like it is not the common oral med that it was 19-15 years ago. Back then, a liver function test was needed each month, along with the pregnancy test. I hear that some of that has changed.
Do you or your loved ones have experience taking Tracleer? If so, what side effects that were not listed do you experience? What other tips can you offer others on taking Tracleer?
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16 Replies
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We are calling all Tracleer users!
We’re on the lookout for anyone with firsthand experience taking this medication. Whether you’ve been using it alongside other types of PH treatments or have a history with it, we want to hear your valuable insights and stories. Please share your experiences with us.
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Tracleer was one of the first PH medications Cullen was prescribed and he remained on it until he received his transplant almost 6 years later. It was effective for him but due to the severity of his condition it was determined he needed triple therapy. In addition to Tracleer he was on Sildenafil and IV Flolan.
He had labs every month and fortunately, his liver held up against all the treatments.
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Hi, @Colleen Steele. I hate that Traceleer wasn’t enough for Cullen. Triple therapy and eventually a transplant, he’s been through so much. Well, your family has been through it all with him. He’s such a resilient and smart young man.
Thankfully, the 8 years of taking Tracleer didn’t impact his kidneys. Thanks for sharing.
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Well I can’t offer very much. I had Bosentan about 10 years ago when first diagnosed with PH. The lower dose first then the higher dose. Only for about 2 or 3 months if my memory serves me. I did not seem to have any side effects and it really helped, but unfortunately it was affecting my liver function which showed up in blood tests so I had to discontinue and went on to ambrisentan. Initially 5mg and a few years later 10mg which has worked well for me ever since.
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Hi, @Aunt Lizzie, Your experience may help others. These medications that require monthly blood tests and then an extra call before you can order the refill are a pain. I was on several that I had to do that, and I felt it was extra labs and calls, which meant time and energy to be on the treatment. Mine wasn’t helping, so thankfully we transitioned to other treatments.
It’s unfortunate that the bosentan was helping but caused liver issues. That’s the things we have to weigh when this happened. What are you taking now? I apologize, I can’t recall much anymore. Hehe
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I have been on bosentain for over a year maybe even 18 months. I have had no side effects from it. other than a sore arm every month from the blood work. (liver function) The blood test is kind of a pain, plus then I have to call the REM nurse for the program for the monthly consuling.
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Hi @Erik, it’s great to hear you aren’t dealing with the extra side effects of bosentan. Taking it that long already, I’m grateful it hasn’t affected your liver. Those extra labs and calls are a nuisance when you are already fatigued. But the precautions to know if it begins to affect your liver is crucial.
Thanks for sharing, Erik. I hope you are doing well and the weather is vcooling a tad in your area.
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I took Bosentan 2 or 3 years ago. Made my shortness of breath worse within a few days. I had to get off it. Then again, I have had bad reactions to several prescription drugs.
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Hi there, Stranger, @Roger Bliss! How are you doing? I can guess you are busy working with running your dump trucks. How is MaryEllen?
Thanks for sharing your experience with bosentan. Yes, it seems you react much differently to most meds, unfortunately. Is it only your PH medications? Or, have you had reactions to other to other medications?
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The only other PH med I had a bad reaction to was amberisentan. It made me short of breath and gave me swollen ankles. Tadalafil seems to be working ok. I took Tyvaso for a year or so. No bad reaction, it just didn’t help me at all. Had some bad reactions to some of the cancer meds.
Got a new Cardiologist. He doesn’t know much about PH, but is willing to work with the PH doctor at UCSD…….which is a good thing.
We are doing ok. Had covid about 3 weeks ago. Still have a cough. Trucking is slowing down. I usually shut down the end of October…….gravel pits close around that time too.
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Hi, @Roger Bliss. I’m sorry to hear that y’all had COVID recently. Did you both have it? It seems to be back here, and the healthcare systems are all warning to take precuations. I wonder if it’s due to the back-to-school madness and changing seasons. I hope your cough resolves for you shortly.
Thanks for sharing more about your reactions to PH and cancer treatments. How is your belly? Are you still doing OK without retaining that extra fluid?
At least your new cardiologist will work with your UCSD team. Will y’all be headed back this way next month? The RV park you stay at had a recent fire; I read about it this morning and thought of y’all. I believe it was just a small one.
Yep, it’s about time for trucking to slow down, and you prepare to slow down some, too. -
@Roger Bliss I’m sorry to hear you had covid. I’ve been thinking you have been kind of quiet lately. I hope you are doing better now with no left over side-effects.
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Mary Ellen didn’t get Covid. Not sure why?? Still have a cough and cough up some stuff, but it’s not bad. I don’t have any extra fluid. Doing good in that dept.
Actually got a call from UCSD today (Elizabeth). My cardiologist called Dr Yang and they are going to work together. Elizabeth, said he was a nice guy and they got along well.
Right now we plan on flying down the 2nd week in Dec to AZ. Got an appointment the end of Jan with the PH doctor. Our son is driving our camper down now to his place in OR. When he gets time he will drive it to AZ for us.
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Hi @Roger Bliss. that’s weird that Mary Ellen didn’t get COVID, too. But I know that’s a positive. Hopefully, your cough will resolve soon.
Incredible news about no extra fluid!
Aww. Elizabeth is so sweet. I’m happy that your doctors will work closely with UCSD.
It sounds like a busy Winter and less driving for you and Mary Ellen. You usuallyisit them in Oregon, too, right?
Thanks for the update.Take care, buddy!
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If we fly to AZ we will miss the kids, but will catch them on the way home. Actually, it will be a much slower winter. Spent a lot of time getting infusions every month and had to stay 6 months. Now I just get a blood test every couple of months for cancer. As long as they come out ok…….I will only have a couple appointments.
As far as PH I have done all the tests they need here in AK except right heart catheter. I already have an appointment for that at UCSD and an office visit.
Won’t be in AZ for a long time like last year. Arrive second week in Dec and leave the 3rd week in March.
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It’s good news that you won’t be so busy with medical appointments this winter, @Roger Bliss. Hopefully, you will still have fun with your “snowbird” buddies.
At least you will see the kids on your way home. I thought y’all usually see them when you head this way. LMK when you are here, and maybe this time we can find a day to meet up. I would love to meet you and Mary Ellen, both.
Have a wonderful weekend, my PHriend.
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