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Uptravi Prescribed To Pt W/ PH WHO Group 3 (sleep Apnea)! Made Him SOO SICK, Looked It Up & It's Only Meant For Pt's W/ PAH Group 1!!!

A myPHteam Member asked a question 💭
Slc, UT

anyone know of meds for Who group 3 PH not PAH
I'd hoped we could get him on sotatercept/winevare but that looks to also be a Rx for PAH. He WAS on Letairis/ambrisentan for almost a yr and it REALLY HELPED at first but it started losing its full effectiveness pry 3 months before he waa told to stop taking it due to slightly elevated liver enzymes and he'd been digressing since. Thats the state he sat in misery in for the next 2 months in the livingroom and our bedroom usually passed out from… read more

October 20, 2024 (edited)
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A myPHteam Member

Yeah for sure. I tried to share some real horror stories I have experienced with "entities" Everything that I posted regarding medical problems was scrapped by the powers that be .It can be very scary when you are dependent on these "entities" to know what is supposed to take place regarding our medical care. I love that term "entities" may I please adopt that term? funny ha ha lol.
Yet there are some folks who are in geographical areas where things are more-----I don't know the term to describe but areas that are much more knowledgeable regarding these PH, & PAH conditions. These folks also speak of having a whole team of "entities" who communicate with each other which provides a level of care that allows those folks comfort knowing they are cared for by very competent "entities" There I found the term to describe what I was trying to convey. Obviously I am speaking of metropolis areas vs. more rural areas. These metropolitan geographical areas are also more advanced at other things besides just medical.
Ex. fashion, technology, news, etc. etc. That is just my opinion and it has nothing to do with any negative connotations regarding rural areas. Which I believe I live in a somewhat rural area compared to New York, Boston, etc. etc. I just googled the word I used above connotations, I hope I used it in the correct context.
I am going to catch up on some posts from everyone that I have missed.....
Have a great upcoming week, and I hope everyone is doing ok.

October 20, 2024
A myPHteam Member

Amen!

October 20, 2024
A myPHteam Member

Do you have a PH specialist? Though that’s not always a guarantee either. My first specialist incorrectly classified me as Group 1 and put me on Opsumit and Adempas. A new clinic director reviewed all the patient records and found the error and took me off both. Ends up they could have killed me.

We have to be so careful and keep ourselves educated

October 20, 2024
A myPHteam Member

Groups 2 and 3 do not have approved PH meds. Both of those groups are treated solely by treating the underlying cause which for Group 3 is lung diseases. The doctor may also use diuretics to help in treatment.

Sotatercept (Winrevair) is in clinical trials for Group 2 and maybe Group 3. I am in Group 2 and applied to get into the trial but I am not sick enough yet so I got rejected

October 20, 2024
A myPHteam Member

It sounds like you're going through a very challenging time. Here are some key points and suggestions based on the information provided in my knowledge base:

Uptravi (Selexipag) Information
- Intended Use: Uptravi is specifically approved for treating Pulmonary Arterial Hypertension (PAH), which falls under WHO Group 1. Show Full Answer

It sounds like you're going through a very challenging time. Here are some key points and suggestions based on the information provided in my knowledge base:

Uptravi (Selexipag) Information:
- Intended Use: Uptravi is specifically approved for treating Pulmonary Arterial Hypertension (PAH), which falls under WHO Group 1.
- Side Effects: Common side effects include headache, muscle pain, jaw pain, pain in extremities, flushed skin, nausea, and diarrhea. Rare but serious side effects include pulmonary edema (fluid in the lungs).

WHO Group 3 PH:
- WHO Group 3: This group includes pulmonary hypertension due to lung diseases and/or hypoxia, such as sleep apnea.
- Medication Suitability: Uptravi is not typically prescribed for WHO Group 3 PH, and its use in this group can lead to adverse effects.

Previous Medication:
- Letairis (Ambrisentan): This medication initially helped but was discontinued due to elevated liver enzymes.

Recommendations:
1. Consult a Specialist: It's crucial to consult a pulmonologist or a specialist in pulmonary hypertension to review his treatment plan and consider alternative medications suitable for WHO Group 3 PH.
2. Medication Review: Discuss the possibility of other treatments that are more appropriate for WHO Group 3 PH. This might include medications that address the underlying lung disease or hypoxia.
3. Monitor Side Effects: Keep a detailed record of any side effects experienced and communicate these to the healthcare provider.
4. Seek Support: Consider joining a support group for caregivers and patients with pulmonary hypertension to share experiences and get advice.

Immediate Steps:
- Stop Uptravi: If the medication is causing severe side effects, it is important to stop it and seek immediate medical advice.
- Emergency Care: If his symptoms are severe, such as extreme pain or discoloration of the legs, seek emergency medical care.

Resources:
- myPHteam: This platform offers resources and a community for those living with pulmonary hypertension. It might be helpful to connect with others who understand your situation.

For more detailed information, you can visit the Uptravi page on myPHteam: [Uptravi — Actelion](https://www.uptravi.com).

Your dedication to his care is commendable, and seeking the right medical advice is the best step forward.

October 20, 2024

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