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

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😊

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Addendum: when I said I am not taking anything, I meant for osteoporosis. Lord knows I'm on a lot of other medications, quite a few are toxic including daily prednisone. So where I to take the bisphosphonates that would mean I would be on 3 immunosuppressant medications. Maybe I already addressed that prior it seems like I said so much so I apologize if it is another repeat.

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@dappy

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.

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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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@sunnyflower

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

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@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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@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

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@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

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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.

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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. 😊

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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!

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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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