Bisphosphonates or Not? Both No Win

Posted by sunnyflower @sunnyflower, Sep 15 12:06pm

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 🙂

@migizii

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.

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Hello migizii and thanks so much for sharing your story! I'm so glad you are doing well with Prolia and so sorry you suffered migraines while trying to find the best medicine for your osteoporosis.

My heart is aching for what your aunt went through. Ballet dancers have the best posture!! I 'm thinking they must have braces to prevent posture nowadays??

When you feel up to it and are comfortable sharing, could you please tell me which meds you tried and what your side effects were and how your DEXA scans improved with each one. Also, how long you were on each one.

Thanks so much. I was not aware of the posture and breathing problems that can occur with osteoporosis.
@dappy

Many blessings, Sunnyflower

REPLY
@lioness

@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

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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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@migizii

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.

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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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@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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@sunnyflower @migizii @lioness @dappy @catharbert
The decision on what to do when we discover we have osteoporosis is an incredibly difficult one. I discovered I have somewhat advanced osteoporosis just about a year ago. The endocrinologist I went to wanted me to get a Reclast injection but I was hesitant, I had another health situation that I wanted to address first. Since then I have learned more and more and now am not sure that I want to take one of these drugs. It dawned on me recently that I have had to stop a number of drugs due to difficult, and rare, side-effects so I worry that I could be that 1 in 10,000 with side-effects from these drugs. I had been thinking that I would do Reclast, I don't want to risk having a severe fracture, I have already had a minor upper femur (hip basically) fracture.

I am reading all of these posts hoping they will help me to decide what course to take. I have a DEXA coming up and appointments with two endocrinologists so hopefully something will come out of all of that. I have been supplementing my diet with calcium, vitamin D, and K, and trying to up my protein consumption. I discovered that protein is really just as important as calcium because our bones are half protein. When I tracked my protein consumption I realized I needed to eat more.

I have told my daughter who is in 30s to be pro-active so she will not get herself into this position, but a big contributing factor to my osteoporosis is having to take prednisone due to having had a liver transplant.
JK

Liked by migizii, sunnyflower

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@sunnyflower

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

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I just had a bone scan this month and won't know the results until next week. I have been taking 70 mg alendronate sodium once a week for 2 years now after being diagnosed for osteoporosis for the first time. If we are still able to keep in touch I'll let you know the results.

Liked by sunnyflower

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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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Hello Catcando and @migizii, thank you for sharing your stories. Catcando, I have not heard of evenity but just looked it up and found this that I thought you all may like to see. Please forgive if you already know this. "EVENITY is an investigational bone-forming monoclonal antibody and is not approved by any regulatory authority for the treatment of osteoporosis. Jul 12, 2018"

Then I saw Tymlos isn't a Bisphosphonate either and doesn't build bone for more than 2 years.

My Endocrinologists want me to take a bisphosphonate. It appears that they all can have horrible side effects, serious and not, but both miserable and debilitating.

My husband and I have discussed in detail, what it would be like were I to take the medication and get the side effect or not to take it and have another or more fractures.

Because I'm already in such poor health and on 2 immunosuppressants, do I want to take a 3rd and put myself at risk for side effects, among which, although rare, can be femur fractures and/or tumor, debilitating bone /joint /muscle pain, etc.?

I am praying for clear direction from the Lord and the peace of God through Christ which surpasses all human understanding, Philippians 4:7.

Catcando, I too have small fiber polyneuropathy, pretty much head to toe, ad well as a very long list of diseases and conditions. Many of which are painful.

I commend you for your efforts to try to exercise as weight – bearing exercises help strengthen bones.

Our situation is very scary and disconcerting to say the least! For me, the only thing that gets me through the many fires we walk through in this life is my faith in Christ. His immeasurable, free, unmerrited, sacrificial love comforts me. I know He cares deeply about me and knows about every detail and has a plan for my life (Psalm 139:16

That is what helps my mental health in dealing with so many painful afflictions.

I wish the absolute best for each one of you. Warmest regards, Sunny flower. 😊

Liked by migizii

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@contentandwell

@sunnyflower @migizii @lioness @dappy @catharbert
The decision on what to do when we discover we have osteoporosis is an incredibly difficult one. I discovered I have somewhat advanced osteoporosis just about a year ago. The endocrinologist I went to wanted me to get a Reclast injection but I was hesitant, I had another health situation that I wanted to address first. Since then I have learned more and more and now am not sure that I want to take one of these drugs. It dawned on me recently that I have had to stop a number of drugs due to difficult, and rare, side-effects so I worry that I could be that 1 in 10,000 with side-effects from these drugs. I had been thinking that I would do Reclast, I don't want to risk having a severe fracture, I have already had a minor upper femur (hip basically) fracture.

I am reading all of these posts hoping they will help me to decide what course to take. I have a DEXA coming up and appointments with two endocrinologists so hopefully something will come out of all of that. I have been supplementing my diet with calcium, vitamin D, and K, and trying to up my protein consumption. I discovered that protein is really just as important as calcium because our bones are half protein. When I tracked my protein consumption I realized I needed to eat more.

I have told my daughter who is in 30s to be pro-active so she will not get herself into this position, but a big contributing factor to my osteoporosis is having to take prednisone due to having had a liver transplant.
JK

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Ditto about everything you said JK!! It's comforting to talk to those who are struggling with the same things!! Difficult bc I can't stand hearing about anyone having to go through this!

Many blessings and keep us posted, Sunnyflower @contentandwell, @catahrbert
@migizii @dappy @lioness 🤗

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@karlotta

I just had a bone scan this month and won't know the results until next week. I have been taking 70 mg alendronate sodium once a week for 2 years now after being diagnosed for osteoporosis for the first time. If we are still able to keep in touch I'll let you know the results.

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Very best wishes!

Liked by karlotta

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@sunnyflower

Hello migizii and thanks so much for sharing your story! I'm so glad you are doing well with Prolia and so sorry you suffered migraines while trying to find the best medicine for your osteoporosis.

My heart is aching for what your aunt went through. Ballet dancers have the best posture!! I 'm thinking they must have braces to prevent posture nowadays??

When you feel up to it and are comfortable sharing, could you please tell me which meds you tried and what your side effects were and how your DEXA scans improved with each one. Also, how long you were on each one.

Thanks so much. I was not aware of the posture and breathing problems that can occur with osteoporosis.
@dappy

Many blessings, Sunnyflower

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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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@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 😊

Jump to this post

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

REPLY
@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.

Jump to this post

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

Liked by migizii

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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

Liked by migizii

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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

Liked by migizii

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