Bisphosphonates or Not? Both No Win

Posted by sunnyflower @sunnyflower, Sep 15, 2020

Hello. I am Sunnyflower. I’ve been in the Neuropathy group for a few months and am still learning how to get around properly in Connect. I’m making progress!! I’m 67. I have a myriad of diseases, several of them painful. Now my most urgent decision is based upon my recent bone density scan results. I’ve had “severe” osteoporosis for about 4+ years. I’ve had several spontaneous fractures (3-pelvic, 1-rib and other smaller bones) from long time steroid use for two of my many diseases; lung and auto-immune diseases-painful inflammation. Three of my Endocrinologists over the years have wanted me to take Bisphosphonates for years but I’m so freaked out by the “rare” potential side-effects. Rare doesn’t mean a lot to me since 3 of my diseases/conditions are rare: diffuse minute meningothelialomatosis, brachial artery stenosis and nutcracker’s esophagus.

My recent bone density scan showed my spine bones are 13% worse and my hip, 14% worse. Anything more than a 2% change is considered significant. Ug. The “rare” serious side effects, femur fractures (can be both at the same time from just standing) and femur tumor (can’t recall or find whether or not that would be cancerous). Then, the not so serious side-effects, “debilitating” bone/muscle/joint pain, flu-like symptoms, stomach upset/pain etc. is also freaking me out b/c I’m already in so much pain I can’t imagine more. Then, if you have any of these unwanted side-effects, they may stay w/ you for the duration of the medication which could be 3 or 6 months or 1 year and then start over! I know I can’t take that yet, more fractures would be awful and a huge hardship on my husband and I would likely have to have care until I heal.

I’m sure you already know everything I’ve said about Bisphosphonates. I can’t wait to meet you and am looking forward to hearing your stories. I’m a woman of faith and it is solely the comfort, peace of God through Christ (Philippians 4:7) and His everpresence that gets me through daily. For that I’m eternally grateful! We all walk through many fires here.

Many blessings and warmest regards, Sunnyflower 🙂

@sunnyflower

Thank you for your kind words! Have you seen the improvement on your scans and how often do you have them? Warmest regards, Sunnyflower 😊

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My scans have reached the point now that if I have no fractures, I do not have to return for two years!

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@catharbert

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.

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I also tried Tymlos twice but it was unsuccessful due to muscle pain. This was given to me during my stress fractures that were taking a long time to heal. I haven’t tried Evenity, so this is helpful for me to know about for the future. Who knows? Perhaps there will be something even better?😊

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@colleenyoung

@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?

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@sunnyflower, My goodness, what a wealth of information you now have on this topic of bones. As you read through these posts there are a couple of things that might help you to put the responses in some kind of order. Probably most important to me now is how long I would have to wait before I can say no to the next dosage of the medication. I am one of those that cannot handle bisphosphonates. I opted for the monthly dosage and regretted it when I had some pretty bad side effects that hung around for a month. That also meant I would not risk medications with long half-lives.

That restriction limited my choices to either Tymlos or Forteo. Next month I will have completed 18 months of Tymlos without any side effects. Essentially, Tymlos and Forteo build bone and the bisphosphonates prevent bone from being lost. The new Evenity may be able to do both. The next thing that might be helpful would do is take a look at the options given your age, activity level, medical issues, and medication profile. This is where your endocrinologist's information and experience will be very helpful

Sharing your decision-making process with loved ones and others can also be very helpful and supportive. As your own advocate, you will make an informed decision.

May you have peace and ease.
Chris

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@migizii

I have multiple health issues (migraines, osteoporosis, fibromyalgia, osteoarthritis, bronchiectasis) but I have been dealing with osteoporosis since I was in my late 40’s. I really can’t remember all the Bisphosphonates I took (and stopped due to migraines), but I do remember having success with IV Boniva, but unfortunately it did not help my osteoporosis. I was then put on Forteo, but quickly stopped this medication due to daily migraines. My rheumatologist switched to Prolia at that point and this was successful for me. I stayed on this medication for three years (maybe longer, I don’t exactly remember) and then talked myself into a year medication holiday. All progress was gone and since by then, I was old enough to take Reclast so my rheumatologist wanted me to try this. I agreed and had very bad side effects that were immediate (flu-like, muscle pain) which lasted about 10 days. I absolutely refused to take this medication again. At this point, I was referred to an endocrinologist at Mayo Clinic and I am now back on Prolia for now (I. Am 65 yrs. now). The future is unknown once I hit the limit of years I can take Prolia. I don’t know if this is helpful, but take care!

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OH my gracious, your nightmare is exactly what I fear! I am so sorry for everything you've been through and wish you much success with the Prolia. Many blessings and warmest regards, Sunny flower

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@migizii

My scans have reached the point now that if I have no fractures, I do not have to return for two years!

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Hallelujah! And may you have no future fractures!! By the way, how often did you have to go in for blood tests? Many blessings, Sunny flower

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@migizii

I also tried Tymlos twice but it was unsuccessful due to muscle pain. This was given to me during my stress fractures that were taking a long time to heal. I haven’t tried Evenity, so this is helpful for me to know about for the future. Who knows? Perhaps there will be something even better?😊

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One can only hope there will be something better! Take care, Sunny flower

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@migizii

I have multiple health issues (migraines, osteoporosis, fibromyalgia, osteoarthritis, bronchiectasis) but I have been dealing with osteoporosis since I was in my late 40’s. I really can’t remember all the Bisphosphonates I took (and stopped due to migraines), but I do remember having success with IV Boniva, but unfortunately it did not help my osteoporosis. I was then put on Forteo, but quickly stopped this medication due to daily migraines. My rheumatologist switched to Prolia at that point and this was successful for me. I stayed on this medication for three years (maybe longer, I don’t exactly remember) and then talked myself into a year medication holiday. All progress was gone and since by then, I was old enough to take Reclast so my rheumatologist wanted me to try this. I agreed and had very bad side effects that were immediate (flu-like, muscle pain) which lasted about 10 days. I absolutely refused to take this medication again. At this point, I was referred to an endocrinologist at Mayo Clinic and I am now back on Prolia for now (I. Am 65 yrs. now). The future is unknown once I hit the limit of years I can take Prolia. I don’t know if this is helpful, but take care!

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Hi Migizii, Thank you for sharing your history. Like you I have multiple health issues and I have problems with side effects with almost every drug I take. I tried Eventy for several months and felt bad so my endocrinologist put me on Tymlos which was worse. Now I am on Alendronate (Fosamax) which will not be as effective as the other drugs but it is once a week and the side effect seem to only last about 24 hours after that dose. Several months ago I talked to a represesntative at Mayo Clinic about my polyneuropathy but I never went there. I live in Texas and the pandemic and other factors have prevented me from going. Did you see an endocrinologist at Mayo or did you have a remote consult? I would be interested in hearing more about your experience with Mayo. Any way, I appreciate what you have gone through and that you have shared it with us. Cathy

REPLY
@artscaping

@sunnyflower, My goodness, what a wealth of information you now have on this topic of bones. As you read through these posts there are a couple of things that might help you to put the responses in some kind of order. Probably most important to me now is how long I would have to wait before I can say no to the next dosage of the medication. I am one of those that cannot handle bisphosphonates. I opted for the monthly dosage and regretted it when I had some pretty bad side effects that hung around for a month. That also meant I would not risk medications with long half-lives.

That restriction limited my choices to either Tymlos or Forteo. Next month I will have completed 18 months of Tymlos without any side effects. Essentially, Tymlos and Forteo build bone and the bisphosphonates prevent bone from being lost. The new Evenity may be able to do both. The next thing that might be helpful would do is take a look at the options given your age, activity level, medical issues, and medication profile. This is where your endocrinologist's information and experience will be very helpful

Sharing your decision-making process with loved ones and others can also be very helpful and supportive. As your own advocate, you will make an informed decision.

May you have peace and ease.
Chris

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Thx Chris. My endocrinologist knows everything about me and is giving me tons of info! It boils down to which would be worse, the side-effects which would exacerbate my existing pain to the point of zero quality of life, or a fracture/s that would likely require surgery of which my docs tell me I'm at high risk for and my Hx of surgeries are brutal; about 3 times longer in hospital and healing, than healthy person and intolerable pain.

There are other variables as well. Hope all is well w/ you. Take care, Sunnyflower

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@sunnyflower

OH my gracious, your nightmare is exactly what I fear! I am so sorry for everything you've been through and wish you much success with the Prolia. Many blessings and warmest regards, Sunny flower

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I have to say, looking back, my migraines felt like much more of a nightmare than anything else I have had to deal with….all the medications were changed as needed….the craziness I have gone through finding a migraine medication plan, was extremely challenging with numerous nutritional, lifestyle and medication changes over many years….presently, they are stable and with my other health issues, my migraines seem to impact me more than anything else…..but eventually I found something that worked for me and you will too for the osteoporosis…..😊😊😊

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@sunnyflower

Hallelujah! And may you have no future fractures!! By the way, how often did you have to go in for blood tests? Many blessings, Sunny flower

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Right now, I go in every six months prior to the injection because my calcium tends to run a bit low and it needs to be in a certain range to receive the injection…..it always manages to be okay though….my endocrinologist attempted to increase my dosage but I couldn’t manage it, so I continue with 800mg of calcium in supplement form and a daily serving of yogurt. Also, I take 2000 mg of vitamin d daily (I live in northern Minnesota so do not get much access to natural absorption of the sun. Take care and stay safe!

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@migizii

Right now, I go in every six months prior to the injection because my calcium tends to run a bit low and it needs to be in a certain range to receive the injection…..it always manages to be okay though….my endocrinologist attempted to increase my dosage but I couldn’t manage it, so I continue with 800mg of calcium in supplement form and a daily serving of yogurt. Also, I take 2000 mg of vitamin d daily (I live in northern Minnesota so do not get much access to natural absorption of the sun. Take care and stay safe!

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Hi migizii, what do you mean that you couldn't handle the increased dosage? Thx. Many blessings, Sunnyflower. 😊

REPLY
@catharbert

Hi Migizii, Thank you for sharing your history. Like you I have multiple health issues and I have problems with side effects with almost every drug I take. I tried Eventy for several months and felt bad so my endocrinologist put me on Tymlos which was worse. Now I am on Alendronate (Fosamax) which will not be as effective as the other drugs but it is once a week and the side effect seem to only last about 24 hours after that dose. Several months ago I talked to a represesntative at Mayo Clinic about my polyneuropathy but I never went there. I live in Texas and the pandemic and other factors have prevented me from going. Did you see an endocrinologist at Mayo or did you have a remote consult? I would be interested in hearing more about your experience with Mayo. Any way, I appreciate what you have gone through and that you have shared it with us. Cathy

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Hi Cantcando, I go to Mayo for endocrinology (osteoporosis issues). I went to Mayo once, many years ago and saw a neurologist for my migraines and had a very poor experience. I sought out their patient services, at the time, who sent my concerns directly back to the particular neurologist, who basically wrote me stating he gave me excellent services. I never went back or followed up any further. Now that I am older, perhaps wiser, but a better self-advocate, I would have continued up the chain of command. I have seen so many neurologists in my local community and our “parent” clinic three hours away, I’ve lost track. We lose specialists routinely because of our very cold and isolated location, my guess. I have seen all my specialists in person (except one during the height of the covid outbreak), even though it’s a long drive (but manageable-about 6 hours). I have been there this summer and they take the utmost precautions and you always feel safe while you are there. Thanks for sharing your experiences too and be well!

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