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Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

How much do you know about the medicines you are prescribed

A myPHteam Member asked a question 💭
Union, MS

So i just wanted to know you guys options and how yall decide what medicines you take. I myself do not run to drug store and take anything from my doctor. I first get all information from him, I then do my own research starting with the company official site, then I look at clinical trials where most time I find placebo does just as good, this is where most people tell me I go to far, I tell them its important. I look every ingredient up, because I cant say half of them, it has amazed me what… read more

May 18
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Reactions
A myPHteam Member

BeverlyKayFinley I do the same thing! Thank you! I also research natural cures(Homeopathic cures), If you have read any of my post you know how I do this! You have the right idea, because doctors do not research the meds they are prescribing. I have found more natural cures that work better than big pharma's drugs and without the side effects. Side effects can be worse than the problem. God bless you! Jesus has the best medicine! Don't get me wrong, I do believe there are good medications that do a good job, but I believe there are a lot that are very bad for you! Do your research!

May 19
A myPHteam Member

I just researched a med my rheumatoligist ordered before taking it & sure enough Mayo Clinic website showed it can exacerbate PAH so called Dr. & informed him & went back on hydroxychloroquine! So be careful everyone as Dr's. can't remember everything about you.

May 22
A myPHteam Member

I take the Medicines my PH puts me on as soon as I get my first dose. Sometimes it can take a few weeks before they are delivered. Because I have to wait and see if it will be covered. So I do some research then. And when I start my new medicine and every time I take my meds I pray over them. I ask God that all the meds I take do what they are supposed to and they do not harm me. And the I look at it if it wasn't for God and the meds I would probably not be here today. Sure I have some side effects. But I remember what my life was like before I started any of my PH meds and it was not good at all!! So the meds brought me some life back. So for that I am grateful for. And for God who strengthens me each and everyday. May God bless and keep you. 🙏

May 19
A myPHteam Member

Good catch

May 22
myPHteam

"Keep PAHing the fight" — love that! 💪 Your approach to researching medications is something many in this community relate to deeply. Being informed is one of the most powerful tools when managing pulmonary hypertension.

A myPHteam member once shared this advice: "Go to all the legitimate sites to learn everything you can Show Full Answer

"Keep PAHing the fight" — love that! 💪 Your approach to researching medications is something many in this community relate to deeply. Being informed is one of the most powerful tools when managing pulmonary hypertension.

A myPHteam member once shared this advice: "Go to all the legitimate sites to learn everything you can in order to be your own best advocate. Some doctors know but don't have enough time with us." Here are some research approaches that others in the PH community find helpful when prescribed a new medication:

- Ask the doctor directly — which symptoms will this medication help, and why is it the best choice for you specifically
- Check credible websites — educational (.edu), government (.gov), and nonprofit (.org) sites are generally reliable
- Review the drug manufacturer's site — they also sometimes offer financial assistance programs for expensive PAH medications
- Look into clinical trials — a great conversation starter with your specialist
- Ask about drug interactions — especially important since many people with PH take multiple medications
- Bring someone to appointments — a trusted person can take notes and catch things you might miss
- Keep a medical binder — tracking your records helps identify patterns over time One important thing to keep in mind — while self-advocacy is incredibly valuable, PAH treatments are highly individualized. What works for one person may not work for another based on their specific type and severity of PH.

Sharing your research with your specialist and making decisions *together* tends to lead to the best outcomes. You have every right to ask questions, push back, and even refuse a treatment — but keeping your care team in the loop helps keep you safe. 😊

May 18

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