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

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

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Hi sunnyflower, I take 800 mg of calcium instead of 1200 mg of calcium because of how my digestive system seemed to react…bloating, aching, constipation and such….

REPLY
@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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Hello, I 'e been taking New Chapter Bone Strength for many years. It's a plant based calcium which is easier to absorb. It has everything in it that one needs. Vitamins D and K, Strontium, etc..

I do exercise but can't bend my knees (bone on bone in left, arthritis not quite as bad on right.) I stand with feet a little apart and shift my weight back and forth miving my arms as much as possible with my joints limitations.

I 've lost 200# over last 3 years, deliberate deprivition, but just learned low calorie diets are terrible for osteoporosis! I've made changes working with a nutritionist.

I' ve had lengthy discussions about the drug options with my endocrinologist who is just precious!

My dentist told me today: Alendronate has long half-life and stays in your for decades. After 3 doses of Reclast, no one will take teeth out if necessary. NO ONE!! Reclast doesn't build bone. So many risks, it's tearing me apart!

I think I have answered your questions.

Hope all is well with you and your family. I wish many blessings for you. Warmest regards, Sunnyflower

REPLY
@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?

Jump to this post

@colleenyoung Colleen, I had to drop out of the Mayo Connect for awhile. My daughter was getting off a horse and slipped. the horse stepped on her ankle and she ended up with a compound fracture in the Tibia, was fixed that night. Then a week later they went in to fix the fibula, which had 3 breaks. He put a plate on it and in 8 they will take it out. She was in tremendous pain, but is under control now with oxycodone every 5 hours. She was in the hospital for 13 days, waiting for a rehab place. Last Thursday they moved her to the Rehab Center of Des Moines. We can't see her yet, because of the covid-19. She seeing the surgeon today because it has been so swollen. It has been hard since I can't see her, but we do talk of the phone a lot. Jeanie lilypaws

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Dearest Jeanie lilypaws, I am so very sorry to hear about your daughter's injuries and that she has to be in the hospital without you! That must be torture on you as well!!! I'm wondering if the swelling is due to compartment syndrome. Keep us posted. My hubby had a comminuted fracture of his tibial plateau, the widest part of that bone at the top of it. Shattered. He ended up getting compartment syndrome after his surgical repair, it was an easy fix and all is well. I will be upholding your daughter and your family in prayer and asking the Lord to bathe you in His presence, to give you His comfort and peace through Christ which surpasses all human understanding Philippians 4:7) and to give you solace. Warmest regards, Sunnyflower @colleenyoung

REPLY
@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, was it you I just told that my nutritionist told me to take 5g of fat w/ the supplements b/c the fat enables the vit Ds to help the calcium do it's thing? Avacado, teaspoon of oil, something like that. I take New Chapter Bone Strength which has all the Ds and Ks and, Strontium. It's a plant based algae calcium which is easier to digest if I'm understanding it correcty. Take good care and warm regards, Sunnyflower

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Sunnyflower have you considered strontium citrate?

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@kathleen1314

Sunnyflower have you considered strontium citrate?

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Hi mcchesney, yes, Strontium is in my New Chapter Bone Strength. It is a plant based algae calcium ; easier to digest. Has the D and K vitamins and more. Thank you! @kathleen1314

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@lilypaws

@colleenyoung Colleen, I had to drop out of the Mayo Connect for awhile. My daughter was getting off a horse and slipped. the horse stepped on her ankle and she ended up with a compound fracture in the Tibia, was fixed that night. Then a week later they went in to fix the fibula, which had 3 breaks. He put a plate on it and in 8 they will take it out. She was in tremendous pain, but is under control now with oxycodone every 5 hours. She was in the hospital for 13 days, waiting for a rehab place. Last Thursday they moved her to the Rehab Center of Des Moines. We can't see her yet, because of the covid-19. She seeing the surgeon today because it has been so swollen. It has been hard since I can't see her, but we do talk of the phone a lot. Jeanie lilypaws

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Thanks for letting me know @lilypaws. I was wondering where you were. I'm glad to hear she got into rehab and hope she progresses well.

When you're ready to catch up with this conversation, your experience with bisphonates and osteoporosis will be welcome. No rush. There are a lot of posts to catch up.

REPLY
@sunnyflower

Hi mcchesney, yes, Strontium is in my New Chapter Bone Strength. It is a plant based algae calcium ; easier to digest. Has the D and K vitamins and more. Thank you! @kathleen1314

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sunnyflower…that strontium will not have any effect…the body ignores strontium when calcium is available…the bodies' calcium receptor also senses strontium but always goes with calcium if it has the choice…that is why strontium users take strontium at night when there is little or no chance of any calcium product taking precedence over the strontium…so sorry you are taking calcium and the strontium you take with it is being eliminated thru your kidneys and not being used in your bones…this can be changed by just taking a strontium supplement at night…AOR makes a good one which is monitored by the great Canadian health care laws on supplements.ha or any strontium citrate will probably work…I just like the comfort of Canada looking over my shoulder

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@sunnyflower

Hello, I 'e been taking New Chapter Bone Strength for many years. It's a plant based calcium which is easier to absorb. It has everything in it that one needs. Vitamins D and K, Strontium, etc..

I do exercise but can't bend my knees (bone on bone in left, arthritis not quite as bad on right.) I stand with feet a little apart and shift my weight back and forth miving my arms as much as possible with my joints limitations.

I 've lost 200# over last 3 years, deliberate deprivition, but just learned low calorie diets are terrible for osteoporosis! I've made changes working with a nutritionist.

I' ve had lengthy discussions about the drug options with my endocrinologist who is just precious!

My dentist told me today: Alendronate has long half-life and stays in your for decades. After 3 doses of Reclast, no one will take teeth out if necessary. NO ONE!! Reclast doesn't build bone. So many risks, it's tearing me apart!

I think I have answered your questions.

Hope all is well with you and your family. I wish many blessings for you. Warmest regards, Sunnyflower

Jump to this post

@sunnyflower I just had my first dose of Reclast What happened to you when on it? Have you had a recent dexascan? Will you let me know if what your on is helping,

REPLY
@lioness

@sunnyflower I just had my first dose of Reclast What happened to you when on it? Have you had a recent dexascan? Will you let me know if what your on is helping,

Jump to this post

Hello, I have not had Reclast nor any other bisphosphonates nor other medication for my osteoporosis. I saw my dentist on Monday and she told me that once you have three injections of Reclast, absolutely no one on earth will pull a tooth if you need it pulled. The risk is so high of the ONJ, Osteo necrosis of the jaw I think is what that stands for and there is no longer blood flow to that area of the jaw so how to keep it alive is a problem let alone should any of the teeth need invasive procedures. The more I read and learn about bisphosphonates, the more I want to stay away from them. I learned from my dentist that Alendronate, which is the every 3 months IV or injection (can't remember), stays in your bones for decades! My dentist is a Specialty Care dentist with much more and much higher degrees than the average dentist. People fly in from out-of-state to see doctors in this practice. So they have the sickest of the sick patients so I think my dentist knows what she is talking about. I will be discussing what I learned from my dentist, on my next phone call with my Endocrinologists coming up next week I believe. I am sorry, I do not mean to scare you or concern you but I did a lot of research on bisphosphonates and also the serious side effects can be rare, they are very serious. And the not so serious ones, are described as severe and debilitating which is, flu-like symptoms that is joint pain and muscle pain. Unfortunately, these symptoms can last the duration of the medication. But again that is rare. However, in the bone muscle and joint group that I have been participating in, quite a few people have suffered those symptoms. And they have struggled with different bisphosphonates trying to find the right one for them that they could tolerate. I don't need more of that personally and that would definitely debilitate me completely. I don't know what else to say, because I feel badly for telling you this since you just started Reclast. That is the one my endocrinologist wants me to be on. Endocrinologist have tried to get me on osteoporosis medications for about 5 years now but I so far have not been able to bring myself to do it. Please forgive me if this information has upset you. That is not my intent and I'm very worried about it. I do feel a moral obligation to tell people what I have learned when they bring up the subject. I wish you all the best from my heart, sunny 🤗

REPLY
@sunnyflower

Hello, I have not had Reclast nor any other bisphosphonates nor other medication for my osteoporosis. I saw my dentist on Monday and she told me that once you have three injections of Reclast, absolutely no one on earth will pull a tooth if you need it pulled. The risk is so high of the ONJ, Osteo necrosis of the jaw I think is what that stands for and there is no longer blood flow to that area of the jaw so how to keep it alive is a problem let alone should any of the teeth need invasive procedures. The more I read and learn about bisphosphonates, the more I want to stay away from them. I learned from my dentist that Alendronate, which is the every 3 months IV or injection (can't remember), stays in your bones for decades! My dentist is a Specialty Care dentist with much more and much higher degrees than the average dentist. People fly in from out-of-state to see doctors in this practice. So they have the sickest of the sick patients so I think my dentist knows what she is talking about. I will be discussing what I learned from my dentist, on my next phone call with my Endocrinologists coming up next week I believe. I am sorry, I do not mean to scare you or concern you but I did a lot of research on bisphosphonates and also the serious side effects can be rare, they are very serious. And the not so serious ones, are described as severe and debilitating which is, flu-like symptoms that is joint pain and muscle pain. Unfortunately, these symptoms can last the duration of the medication. But again that is rare. However, in the bone muscle and joint group that I have been participating in, quite a few people have suffered those symptoms. And they have struggled with different bisphosphonates trying to find the right one for them that they could tolerate. I don't need more of that personally and that would definitely debilitate me completely. I don't know what else to say, because I feel badly for telling you this since you just started Reclast. That is the one my endocrinologist wants me to be on. Endocrinologist have tried to get me on osteoporosis medications for about 5 years now but I so far have not been able to bring myself to do it. Please forgive me if this information has upset you. That is not my intent and I'm very worried about it. I do feel a moral obligation to tell people what I have learned when they bring up the subject. I wish you all the best from my heart, sunny 🤗

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@sunnyflower. You didn't upset me I have been trying to decide for years and my pushy rheumatologist finally convinced me to try it I have a dexascan next July and I,ll see then I appreciate those who research everything so don't worry I'm glad you told me what you have found. I probably will not take anymore and stay on my calcium regimen I want to research strontium someone talked about to see if I should add it to what I'm doing now minus Reclast Thanks for your honesty .

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