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    • #18435
      Colleen Steele

      For the general population there is information in articles, on the news and even on the prescription bottles themselves about the possible risks and side effects of using certain medications long term. However, when you are living with a serious disease such as pulmonary hypertension, it seems that these concerns are known but not addressed because the reality is not using them would have bigger consequences.

      I happened upon these two articles,  “22 Common Medications That Can Be Bad Long-Term,” and “30 Risky Prescription Medicines”. The sources aren’t mentioned and I’m not familiar with the author, “A Lot Health Team” so take what is said with a grain of salt, however, I think it’s a valid concern that long term use of medications has it’s risks. That being said, I counted 12 of the 52 medications listed as ones my son has been on long term, and I have no thought of taking him off of them because they are very much needed! When I weigh the benefits of taking the medications compared to the possibility of complications later, the benefits win.

      What are your thoughts on this topic? Have you discussed the affects of long term use of medications with your doctor and if so, what were you told? Have you been on a medication long term that is now causing problems for you? Please share your experience.–17134–15575



    • #18455
      Jen Cueva

      So true, Colleen, I’m on at least 11 of those meds on the lists. As you mention, I’m concerned about the potential side effects but for me, I need these meds to get through the days.

      It’s not that I’m not worried about the potential risks, I know the consequences if I don’t use them.

      I was told by my kidney doctor that my kidney disease is due to the long-term and high dosages of diuretics. My PH doctor agreed. Yes, these diuretics can be potent but remaining in heart failure can be fatal. For myself, we try to lower the diuretic dosages when possible to hopefully prevent further kidney damage.

      • #18465
        Brittany Foster

        Really good topic ! This can be such am hard balance sometimes especially for the doctors that are trying us on these medications to weigh the risks and benefits of taking a drug. Long term use of some of the medications that I’m on aren’t studied as much and some of the medications that I am taking for things like my motility in my stomach aren’t even official “motility meds” I take a lot of medications that are “off label” used to treat some of my health conditions and improve the symptoms. For me, I have to remind myself that taking the medication is better than the alternative like what Jen is saying too. Sure, medications for the heart and everything are easy for us to become dependent on, but taking them is better than having heart failure. Same as taking medication for pain management. Better to manage the pain and be in less physical stress! That one is a harder topic though especially when using things that could be “addictive”.

    • #18498
      Jimi Mcintosh

      Long term medications all come with side effects, some mild, some harsh, some downright deadly. Each change starts a cycle of learning, and dealing with new issues. I thought I had found my ideal drug regiment, I had energy, I could walk 2 miles, play with grandkids, coach and work in my yard, side effects were kidney and liver damage. Current meds, less energy, inability to walk farther than 1/2 mile, sensitivity to heat, and memory issues. I am tempted to try holistic
      Meds, looking for someone to supply me with them. Ideal situation is a combination of holistic and traditional westerneds

      • #18501
        Brittany Foster

        I have done both the holisitc medicine and traditional medicine approach for awhile. I learned tat holisitc healing is way more than just taking supplements too. I have tried things like incorporating reiki and energy healing, reflexology, yoga and meditation, and massage therapy. I have also tried accupuncture. Did you ever try any of these approaches to symptom management? There is a place near me that works with a lot of holistic healing and focuses on nutritional wellness too and eating the foods that would promote healing. Definitely interesting connection and a lot of studies done on brain and gut health and the connection between the two.

        • #18513
          Jen Cueva

          I think that you and Jimi mention some strong points, Brittany! I think that holistic and/ or functional medicine can play a role when added with traditional medicines and techniques.

          I’ve had nine some that have used acupuncture and reiki. I also find that our gut health controls and affects many things in our bodies that no one even really discussed before.

          As we have mentioned here before mental and physical well-being goes hand in hand. This included overall body self-care.

    • #18504
      Brittany Foster

      Hi Kevin,
      interesting that you bring up peripheral neuropathy. I am actually going to be tested soon to see if I have small fiber neuropathy contributing to the pain that I’m feeling in my legs and the peripheral neuropathy symptoms I have been having. How were you diagnosed with that, was it with a skin biopsy? That is what they are planning on doing for me. I would love to hear more about how acupuncture is helping you with this and the benefits or symptom improvements that you are feeling. I can’t even imagine being given MORE meds on top of what I’m already taking just to manage this.

    • #18572
      Brittany Foster

      Thank you so much for all the information you are providing. I’m sure it will help other people at least start to look into other types of medicine besides just the traditional medicine that we are used to. The therapy that you are receiving really seems beneficial and it seems like you are getting improvement out of it ! I know that if it comes back positive for a diagnosis of neuopathy for me, I would want to treat it in a more natural approach, one that is similar to yours. THC is legalized in the state of MA and that is where I get a lot of my care so I am way more open to talking about using it. It has helped so many people and so many conditions and has given a lot of people I know some type of quality of life back when they are managing severe pain.

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