Bisphosphonates or Not? Both No Win

@sunnyflower
The family of bisphosphonates includes the following drugs:
- Oral: Alendronate (Fosamax), risedronate (Actonel), and ibandronate (Boniva)
- IV: Pamidronate, ibandronate and zoledronic acid (Reclast/Zometa)

@contentandwell is correct that there exists many discussions about osteoporosis treatment in the group, some of them include the drug name in the title. You can browse the topics in the Bones, Joints & Muscles group (https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/) or use the search function.

Here's an inventory of relevant, recently active discussions:
- Osteoporosis Treatment and GI Issues https://connect.mayoclinic.org/discussion/osteo-treatment-and-gi-issues/
- Are you taking Reclast for osteoporosis? https://connect.mayoclinic.org/discussion/are-you-taking-reclast-for-osteoporosis/
- Weight gain with Prolia https://connect.mayoclinic.org/discussion/weight-gain-with-prolia/
- Anyone taken Evenity (romosozumab) for Osteoporosis? https://connect.mayoclinic.org/discussion/evenity-osteoporosis/
- Clinical trials for osteoporosis https://connect.mayoclinic.org/discussion/clinical-trials-for-osteoporosis/
- Tymlos side effects https://connect.mayoclinic.org/discussion/tymlos-side-effects/
- Tymlos or Prolia https://connect.mayoclinic.org/discussion/tymlos-or-prolia/
- Calcium and Vitamin D for bone density https://connect.mayoclinic.org/discussion/calcium-and-vitamin-d-for-bone-density/
- My Experience on Evenity https://connect.mayoclinic.org/discussion/evenity/
- Anyone taken Evenity (romosozumab) for Osteoporosis? https://connect.mayoclinic.org/discussion/evenity-osteoporosis/
- Osteostrong https://connect.mayoclinic.org/discussion/osteostrong-1/
- Osteoporosis treatment or strontium citrate? https://connect.mayoclinic.org/discussion/osteoporosis-treatment-or-strontium-citrate/

I'd also like to bring @becsbuddy @sue225 @giovi @artscaping @lelia @bonnieh218 @1nan and @parrotqueen into this discussion for a variety of experiences. Weighing the pros and cons is a very individual choice, and only one you can make after talking with your doctor, asking questions and more questions after you do your research.

Sunny, may I ask what diet, exercise or lifestyle adjusts are you making for bone health in addition to considering treatment options?

Hi Sunnyflower. I have osteoporosis and was on all the bisophonates(?sp) and could not tolerate them so went on Prolia. After the first 2 years my Dexa scan showed improvement. I was due my 8th injection in April but did not due to all the COVID that’s a around us and didn’t want to go out. I actually had reservations about getting the injection anyway. Over the last 2 years I’ve developed a bad hip problem. Very painful and it can be from sitting, standing, walking whatever. It hurts every day. I’ve been to orthopedic, chiropractor, and 2 rounds of PT. They have only done x rays and say it may be this or that but nothing conclusive. I go to a new doctor in Oct. hoping he can help me. Is all this from Prolia??? I don’t know but I didn’t have this before but again I’m getting older too. Hope you make the right decision.

Hello Colleen, thank you so much for caring about my situation to put for the time and effort to connect me with the right people AKA links.

I think the answers to your questions are in my latest replies two people in the bone joint and muscle osteoporosis to take or not to take or something like that which was a discussion I started.

I don't mean to put you off but am not feeling up to answering just now. I will try to be more precise as soon as I can.

But just know, I have the sweetest, kindest, most patient endocrinologist on the planet! She has gone above and beyond to explain to myself in the husband about all the drugs that I could take and has included pages of information and clinical trials on these options.

I am currently not taking anything but have had three endocrinologist over the years and at least five years ago they began to tell me I need to take an osteoporosis medication because I have already had spontaneous fractures due to so many steroids and so many years on steroids.

Most of my providers, which are mostly specialist and I'm talking a lot of Specialists, tell me I'm a very complicated patient because of all my diseases and conditions. I feel this is a no-win because I am already on to immunosuppressant drugs so taking the in phosphonates would be a third. I was on 3 but had to discontinue my 20 some years of Plaquenil because it cause tissue death in my retina.

I am so grateful for the links and connections you have sent me and can't wait to have a time to begin reading them.

I am very blessed that you have taken your time to help me out because this decision is weighing so heavily on myself and my husband that it's taking a toll for certain which isn't good for my very poor health in so many ways.

I hope you're having a good day and are as acutely aware of the innumerable blessings that surround us, as I am, even in the midst of unrelenting all over pain and the usual fires that we walk through here on this Earth.

Take special care of yourself calling as you are really a special person! Many blessings and peace for your soul, Sunny flower😊

Hi Sunnyflower. I have osteoporosis and was on all the bisophonates(?sp) and could not tolerate them so went on Prolia. After the first 2 years my Dexa scan showed improvement. I was due my 8th injection in April but did not due to all the COVID that’s a around us and didn’t want to go out. I actually had reservations about getting the injection anyway. Over the last 2 years I’ve developed a bad hip problem. Very painful and it can be from sitting, standing, walking whatever. It hurts every day. I’ve been to orthopedic, chiropractor, and 2 rounds of PT. They have only done x rays and say it may be this or that but nothing conclusive. I go to a new doctor in Oct. hoping he can help me. Is all this from Prolia??? I don’t know but I didn’t have this before but again I’m getting older too. Hope you make the right decision.

Thank you so much for sharing with me. I have the sweetest endocrinologist in the world! She spent an hour and 20 minutes on the phone with my husband and myself discussing everything you can think of about everything from my health to the different drugs and their side effects and Then followed that with sending me excellent clinical trial studies on the different medications Etc.

Because I am such a complicated patient per what pretty much every specialist and provider that sees me says, and I'm already on so many toxic medicines, it really is a potential no-win for me.

If I do begin a bisphosphonate, it will be my third immunosuppressant drug that I will be on. I used to be on three but had to discontinue the Plaquenil due to it causing some tissue death in my retina. I really don't like being immunosuppressed, especially since I have 19 grandkids, the cutest Petri dishes you ever saw! LOL! My daughter is waiting to see if their latest baby will be approved for adoption but we think she will.

Besides the potential serious side effects, the potential not so serious side effects describe the pain in the muscle joints and bones debilitating. I already have so much of that pain along with my neuropathy pain which is mostly my skin, but I really can't imagine being in more pain! There would be almost no quality of life and I would be totally bed bound.

Were I to break a phone, I would need more care than my husband can give me since he's working. What is the lesser of two evils is the question.

I feel like I have written these things so many times but I can't remember to whom I wrote them? So please forgive me if this is a repeat or multiple repeat.

Take excellent care of yourself and warmest regards, Sunny flower

In reply to @sunflower My decision to pursue medication was based on seeing my aunt as an older person, who was unable to stand up straight and had to live on oxygen as a result of the position her body contorted in from osteoporosis. There were no drugs available when she was old and it remained steadfast in my memory of this wonderful woman, who was a professional ballroom dancer (with her husband) but could no longer enjoy any life outside of their small assisted care setting. She lived a long time this way. She was a small, petite woman (and so am I)....thus, this was my journey....will it be the right one? Who knows....but it will have to be for me....there will not be looking back but only forward to what life has to offer me as I move along in my life.....I’ve had to wrestle with these decisions a long time and I have had a few stress fractures, but otherwise things have been going along...many Bisphosphonates I was unable to tolerate due to migraines, but I think I’ve been on all of them with mixed results. Right now Prolia is what I am using with good results, but that may not be the decision that you reach. Good luck; have faith in your decision; and if a doctor doesn’t feel comfortable working with your decision; I would look for a different one.

@sunnyflower No problem we all have something I have 2back fractures Neuropathy fibromyalgia. Alot of osteoarthritis all through me and osteoporosis so it took me awhile talking with my Dr but with the dexascan numbers I had she told me I had to get on something so first the Alonedronate? which my stomach didn't like as I said I had no I'll effects of the Reclast infusion Praying for whatever you both decide

In reply to @sunflower My decision to pursue medication was based on seeing my aunt as an older person, who was unable to stand up straight and had to live on oxygen as a result of the position her body contorted in from osteoporosis. There were no drugs available when she was old and it remained steadfast in my memory of this wonderful woman, who was a professional ballroom dancer (with her husband) but could no longer enjoy any life outside of their small assisted care setting. She lived a long time this way. She was a small, petite woman (and so am I)....thus, this was my journey....will it be the right one? Who knows....but it will have to be for me....there will not be looking back but only forward to what life has to offer me as I move along in my life.....I’ve had to wrestle with these decisions a long time and I have had a few stress fractures, but otherwise things have been going along...many Bisphosphonates I was unable to tolerate due to migraines, but I think I’ve been on all of them with mixed results. Right now Prolia is what I am using with good results, but that may not be the decision that you reach. Good luck; have faith in your decision; and if a doctor doesn’t feel comfortable working with your decision; I would look for a different one.

I am 76 y.o. and recently found out I have severe osteoporosis. I have problems with many drugs. I also have polyneuropathy. I was anxious to take the first thing my endocrinologist offered, Evenity, a newer drug that can help rebuild bone as well as stop further destruction. After 5 months I was tired of feeling so bad, tired, weak, etc. and asked for something else. He gave me Tymlos which I injected myself daily. That lasted about 2 weeks but it was the same thing - I didn't want to feel bad the rest of my life so he switched me to Alendronate, oral once a week which has hardly any side effects but only works on stopping the destruction. In hindsight the Evenity wasn't as bad as the Tymlos but the doctor won't let me go back to it. So I live with fear every moment that I will have a fracture, especially in my spine. Like you I am small - 4'11", 115 lbs. I struggle to exercise but I am afraid of becoming like your aunt so I keep trying. Your post touched me and inspires me. Thank you for sharing your experience and point of view and your advice.

Hi JK,
Did you have a DEXA when your trochanter broke or will October be your first? And, was it a spontaneous fracture (no cause/trauma) like my 3 pelvic and rib Fxs were?

I am thinking that I will try to take the bisphosphonate. My doc says that I could try the 3 month one, Alendronate, to see if I tolerate it and if I do, then I can transition to the Reclast (?) , one an injection every 6 months, the other (Prolia?? - too lazy to look right now), a yearly IV. I don't want to, am so scared but a spine, hip or femur fracture would be horrible.

So many considerations for me. So many toxic drugs.

I don't mean to scare you away from treatment if you need it. I was hoping to hear from many others who have been taking Bisphosphonates. Have you talked with anyone in this group about their osteoporosis experiences?

Hope you have a blessed day, Sunnyflower