This topic contains 9 replies, has 5 voices, and was last updated by  Brittany Foster 3 months ago.

  • Author
  • #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”.

  • #18488
     Kevin Smith 

    Western medicine seems often more a necessary evil than as therapy or cure. I am using acupuncture for my peripheral neuropathy and am taking Selexipag for the PAH. I use a TENS system for the feet neuropathy. But these meds in these links, while perhaps slightly overstated for sensational effect, make me want to move to the PR of China and enroll in a traditional Chinese medicine hospital. More than anything I wish I could leave this horrible country where medicine is based on profit but I am permanently tied to the (wonderful and beneficial) VA and medical centers in this “country” because I can’t get Selexipag out of the country from the VA. Having said that I wish all citizens here could have medical care that I have. It’s possible we’re it not for the politicians and drug companies etc. all standing in the way of our needs and benefits.

    • #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.

      • #18560
         Kevin Smith 

        I learned of “progressive idiopathic neuropathy” by accident. I was attending a physical therapy first encounter in the hopes of addressing the numb spots in my feet when I happened to see in the papers the PT was holding the phrase, “progressive idiopathic neuropathy.” Surprised as all holy hell, as this was the first suggestion of a feared and supposedly irreversible condition in which diabetics typically lose their feet, I had a minor mental breakdown at that point and went home. The therapist called the VA medical center in Vermont and talked to a crisis counselor, legitimately fearing for my state of mind, who called me and offered all sorts of resources as well as her personal number to call anytime.

        My acupuncturist – under whose care I have been cared for since late 2017 for other things – was spot-on in her initial diagnosis and the diagnosis related to neuropathy, which she successfully treats. To paraphrase her, my blood is too thick, mainly due to the many meds I take as well as due to mild type II diabetes, and the nerves in my hands (where I have some arthritis-like symptoms, difficult for a lifelong pianist and former church organist) and feet are not getting sufficient nourishment from blood flow, hence the tingling and numbness, and pain in the hands early morning. She uses needles on the specific meridians for enervating the feet nerves currently less-than-responsive. I also use a TENS system for direct electrical stimulation of the muscles, skin and nerves at the affected numb spots. This combined therapy is helping, albeit slowly. She tests the needle insertions by manipulating them and asking what I feel. If I feel a sensation travel along a line or a radian from the insertion point to the affected toe or numb area, she has fond the proper place. While the needles are in I feel a slight electric tingling in the affected areas (she does not use electrical acupuncture needles). Over time, I have noticed a decrease – very slight, but continual – in the numbness and the overall symptoms of neuropathy, and that is the goal.

        I’ve also experimented with Berberine, a miracle herb on a par with THC and CBD, but whose western preparation into capsule form includes some elements that give rise to side-effects. I may experiment with its anti-diabetic and anti-neuropathic effects by using the herb in its pristine form, through my acupuncturist (who is also an expert in traditional Chinese medicinal herbs). The concern was a certain enzyme in Berberine which is deleterious to the heart, and my cardiologist advised against it.

        Boswellia is also beneficial for neuropathy and arthritis especially but can be hard on the stomach, and I, who am especially susceptible to side effects, noticed this and had to stop.

        Finally, I use cannabidiol (CBD) religiously. It has reduced systematic inflammation everywhere and has helped in many ways, not the least of which is with nighttime nasal congestion and other things. I also have access to medical THC which I used when uptitrating with Selexipag, but since I am now stable at 1200 mcg twice a day I no longer need it, plus I didn’t really like being high. I ain’t 18 in college anymore.

        (CBD, THC, Berberbine…miracle herbs. If there is a god it put these things here for us to discover and make our lives better, even as others not with the same realities destroy the only planet we’ve got.)

        I recommend TENS especially because it works. The electrical impulses stimulate the nerve fibers and hence increase activity, I guess, so that is what is desired.

        But even moreso I advocate for acupuncture and traditional Chinese medicine because several thousand years and billions of Chinese can’t be wrong. Western medicine is too headstrong and absurdly proud to admit it has limitations, especially in terms of drugs, and to me acupuncture is mysterious yet effective at the same time.

        Don’t settle on the first needle pusher you meet. If you have several, try them all and ask lots of questions. Make sure they will take time to do so. If you lived in NE Vermont I would have an easy recommendation for you!

      • #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.

  • #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.

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