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 🙂

Hi, @sunnyflower. Welcome to the osteoporosis discussions.

I too am in a quandary about the drugs. I fully expected to start one this fall but I suddenly realized that I have rare side-effects to many drugs that have been prescribed for me, one that I just realized this week was causing me a problem. I knew I had a problem but I never considered that it could be from what I now suspect it is from. I actually rarely read side-effects thoroughly because I don’t want to be influenced into thinking that I have a side-effect if I really don’t.

I have an appointment with my endocrinologist in November, a DEXA in October. I hope she will be able to give me some good guidance on how to handle my osteoporosis without drugs. I‘ve heard of people who chose to go drug-free who were then dropped by their doctor, I guess in a “do as I say, or go away” attitude. It is scary to go drug free, I know I am at great risk of fracturing due to having to take prednisone.
JK

REPLY
@contentandwell

Hi, @sunnyflower. Welcome to the osteoporosis discussions.

I too am in a quandary about the drugs. I fully expected to start one this fall but I suddenly realized that I have rare side-effects to many drugs that have been prescribed for me, one that I just realized this week was causing me a problem. I knew I had a problem but I never considered that it could be from what I now suspect it is from. I actually rarely read side-effects thoroughly because I don’t want to be influenced into thinking that I have a side-effect if I really don’t.

I have an appointment with my endocrinologist in November, a DEXA in October. I hope she will be able to give me some good guidance on how to handle my osteoporosis without drugs. I‘ve heard of people who chose to go drug-free who were then dropped by their doctor, I guess in a “do as I say, or go away” attitude. It is scary to go drug free, I know I am at great risk of fracturing due to having to take prednisone.
JK

Jump to this post

Hello JK, thx for replying. You are the first and I am surprised because I received possibly 40 to 50 emails a day from the Neurology Group. They may be larger than this group?

You sound like me in that you have had some side effects from prior medication. I do not know if they were serious side effects or not? For example, my demodifying anti Rheumatic drug (DMARD) harmed my kidneys, prednisone cause my osteoporosis, cataracts and adrenal gland disease, 20 years of Plaquenil use cause some tissue death in my retina and the list goes on.

With the bisphosphonates, not so serious side effects could still be debilitating such as bone/joint and muscle pain, flu-like symptoms, fatigue weakness excetera. All of which I already have and live with so if it were worse I don't see I could get out of bed at all were I to have those.

Also, they can go the duration of the medication, which depending on which drug, can be 3, 6 or 12 months and then I believe you must start again.

It is a very hard decision because the Sirius and not serious side effects which again are supposed to be rare , except for the flu like symptoms for maybe the first 3 days or so and then resolved.

You don't mention if you have broken any bones have had a prior bone density study or your age.

Please keep us up-to-date on what's going on with you and know that I will be praying for you and your situation. It's really, really tough isn't it?

I still don't know what to do and my husband and I have been talking about over extensively. I have the sweetest most kind and patient endocrinologist on the planet so I am exceedingly blessed and deeply grateful! I wish the same for you. She has provided me the latest up-to-date most reliable studies and clinical trials on bisphosphonates but now that I read through them with my husband I wish I wouldn't have. I just don't know, there are such long list of possible unwanted or serious side effects on any drug you can take, even a Tylenol.

Take good care of yourself and I wish for you peace for your soul. Many blessings, Sunny flower
PS: if you have any kind of poor kidney function, that will eliminate you from at least one of the the options.

REPLY
@sunnyflower

Hello JK, thx for replying. You are the first and I am surprised because I received possibly 40 to 50 emails a day from the Neurology Group. They may be larger than this group?

You sound like me in that you have had some side effects from prior medication. I do not know if they were serious side effects or not? For example, my demodifying anti Rheumatic drug (DMARD) harmed my kidneys, prednisone cause my osteoporosis, cataracts and adrenal gland disease, 20 years of Plaquenil use cause some tissue death in my retina and the list goes on.

With the bisphosphonates, not so serious side effects could still be debilitating such as bone/joint and muscle pain, flu-like symptoms, fatigue weakness excetera. All of which I already have and live with so if it were worse I don't see I could get out of bed at all were I to have those.

Also, they can go the duration of the medication, which depending on which drug, can be 3, 6 or 12 months and then I believe you must start again.

It is a very hard decision because the Sirius and not serious side effects which again are supposed to be rare , except for the flu like symptoms for maybe the first 3 days or so and then resolved.

You don't mention if you have broken any bones have had a prior bone density study or your age.

Please keep us up-to-date on what's going on with you and know that I will be praying for you and your situation. It's really, really tough isn't it?

I still don't know what to do and my husband and I have been talking about over extensively. I have the sweetest most kind and patient endocrinologist on the planet so I am exceedingly blessed and deeply grateful! I wish the same for you. She has provided me the latest up-to-date most reliable studies and clinical trials on bisphosphonates but now that I read through them with my husband I wish I wouldn't have. I just don't know, there are such long list of possible unwanted or serious side effects on any drug you can take, even a Tylenol.

Take good care of yourself and I wish for you peace for your soul. Many blessings, Sunny flower
PS: if you have any kind of poor kidney function, that will eliminate you from at least one of the the options.

Jump to this post

Thanks, @sunnyflower The side-effects I have had, other than osteoporosis from prednisone, have not been permanent so far, I think. I say I think because I have been a lot of trouble with lightheadedness and terrible fluid retention recently with no apparent reason. I just discovered this week that these side-effects can be caused by a gel I am using to ease the pain of my hip bursitis. They are rare side-effects so that's probably why no one picked up on it. I can't be absolutely certain yet that is the cause of my problems but I strongly suspect it is at least the cause of my lightheadedness because I was away for a few weeks and didn't use the gel and was not lightheaded. I am hoping that the fluid retention in my legs will start to decrease, I know that can take a few weeks. I am hoping that there was no permanent damage to my heart though. That could be scary.

The other side-effects I have had from drugs have been just while taking them, with no permanent damage, but the osteoporosis can cause some very serious problems. My endocrinologist (actually I have seen two, plus my PCP) has assured me that the odds of having a problem are exceedingly low, like 1 in 10,000, so I was planning to risk it until I realized just how many pharmaceuticals have caused me problems. I need to do more research to see if any of these osteoporosis drugs absolutely do not cause any severe problems.

I did have a fracture, in July 2019. It was fortunately a minimally displaced trochanteric femur fracture, but even though it was minimal it took a very long time to feel good again. That was what led me to ask my PCP if I was due for a DEXA. Turned out I was way overdue. When I had the DEXA last September it showed somewhat advanced osteoporosis.

As I mentioned, I am having a DEXA in October and seeing both endocrinologists in November. I have no idea if Medicare will pay for all of the appointments but even if they don't I consider it to be worth it to get opinions from two highly respected doctors — this is a pretty big decision when all is considered.
JK

Liked by sunnyflower

REPLY
@contentandwell

Thanks, @sunnyflower The side-effects I have had, other than osteoporosis from prednisone, have not been permanent so far, I think. I say I think because I have been a lot of trouble with lightheadedness and terrible fluid retention recently with no apparent reason. I just discovered this week that these side-effects can be caused by a gel I am using to ease the pain of my hip bursitis. They are rare side-effects so that's probably why no one picked up on it. I can't be absolutely certain yet that is the cause of my problems but I strongly suspect it is at least the cause of my lightheadedness because I was away for a few weeks and didn't use the gel and was not lightheaded. I am hoping that the fluid retention in my legs will start to decrease, I know that can take a few weeks. I am hoping that there was no permanent damage to my heart though. That could be scary.

The other side-effects I have had from drugs have been just while taking them, with no permanent damage, but the osteoporosis can cause some very serious problems. My endocrinologist (actually I have seen two, plus my PCP) has assured me that the odds of having a problem are exceedingly low, like 1 in 10,000, so I was planning to risk it until I realized just how many pharmaceuticals have caused me problems. I need to do more research to see if any of these osteoporosis drugs absolutely do not cause any severe problems.

I did have a fracture, in July 2019. It was fortunately a minimally displaced trochanteric femur fracture, but even though it was minimal it took a very long time to feel good again. That was what led me to ask my PCP if I was due for a DEXA. Turned out I was way overdue. When I had the DEXA last September it showed somewhat advanced osteoporosis.

As I mentioned, I am having a DEXA in October and seeing both endocrinologists in November. I have no idea if Medicare will pay for all of the appointments but even if they don't I consider it to be worth it to get opinions from two highly respected doctors — this is a pretty big decision when all is considered.
JK

Jump to this post

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

REPLY
@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

Jump to this post

@sunnyflower I had the fracture from a pre-syncope experience, I basically passed out for a second and fell on the tile floor. I then asked my PCP if I was due for a DEXA and I was — my last had been in January of 2014 and then I had osteopenia, so I had the DEXA in September 2019.

You did not scare me away, I had already scared myself away due to my negative reactions to so many pharmaceuticals. There are very active groups on here discussing the various drugs. If you use the search feature you can find more, they are in the Bones, Joints and Muscles discussions:
https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/
Here are some specific ones and if you use the search with a particular drug name that will bring you to more discussions.
https://connect.mayoclinic.org/discussion/osteoporosis-treatment-or-strontium-citrate/?utm_campaign=search
https://connect.mayoclinic.org/discussion/osteo-treatment-and-gi-issues/?pg=1#comment-420439
https://connect.mayoclinic.org/discussion/reclast-infusion/?utm_campaign=search
https://connect.mayoclinic.org/discussion/are-you-taking-reclast-for-osteoporosis/
https://connect.mayoclinic.org/discussion/hi-im-new-to-the-site-and-am-interested-in-treating-osteoperosis/
The newer drugs that are supposed to build bone are Tymlos and Forteo. I know there are discussions that mention them also.
JK

Liked by sunnyflower

REPLY
@contentandwell

@sunnyflower I had the fracture from a pre-syncope experience, I basically passed out for a second and fell on the tile floor. I then asked my PCP if I was due for a DEXA and I was — my last had been in January of 2014 and then I had osteopenia, so I had the DEXA in September 2019.

You did not scare me away, I had already scared myself away due to my negative reactions to so many pharmaceuticals. There are very active groups on here discussing the various drugs. If you use the search feature you can find more, they are in the Bones, Joints and Muscles discussions:
https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/
Here are some specific ones and if you use the search with a particular drug name that will bring you to more discussions.
https://connect.mayoclinic.org/discussion/osteoporosis-treatment-or-strontium-citrate/?utm_campaign=search
https://connect.mayoclinic.org/discussion/osteo-treatment-and-gi-issues/?pg=1#comment-420439
https://connect.mayoclinic.org/discussion/reclast-infusion/?utm_campaign=search
https://connect.mayoclinic.org/discussion/are-you-taking-reclast-for-osteoporosis/
https://connect.mayoclinic.org/discussion/hi-im-new-to-the-site-and-am-interested-in-treating-osteoperosis/
The newer drugs that are supposed to build bone are Tymlos and Forteo. I know there are discussions that mention them also.
JK

Jump to this post

Thx so much JK, especially for the links. Yes, I'm familiar w/ the search feature but will research further. Thank you for taking the time! Ug, I just read about Prolia and I can't get away from it; the bisphonphonates do affect the immune system so essentially I would be on three, not two, were I to begin taking it. I also read the risks of missing doses and the risk of fractures increases if that is the case. So, to try the every 3 month Alendronate to see if I can tolerate it and then transitioning to Recast or Prolia, could be a problem. I was on 3 immunosuppressant meds for over 20 years but had to D/C the Plaquenil (hydroxychloroquine-I would take it again temporarily in a heart beat were I to get Covid-19). I took a bad fall this past year. My foot got caught in my bedskirt and I went down! Ended up on my stomach a few feet away. It was on soft carpet. The bruise was GIGANTIC! But, I fell on a fat pad on my hip and I didn't break a bone!! So wait, I don't get it, technically I should have! Clearly God intervened. Walkikng by faith, Sunnyflower

REPLY

@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?

REPLY
@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

Jump to this post

@sunnyflower Ll like you the Dr tried me first on the Alendronate my stomach is sensitive and hurt so much I called her and she said we,d do the Reclast infusion it's once a year. I didn't have any side effects

REPLY
@sunnyflower

Thx so much JK, especially for the links. Yes, I'm familiar w/ the search feature but will research further. Thank you for taking the time! Ug, I just read about Prolia and I can't get away from it; the bisphonphonates do affect the immune system so essentially I would be on three, not two, were I to begin taking it. I also read the risks of missing doses and the risk of fractures increases if that is the case. So, to try the every 3 month Alendronate to see if I can tolerate it and then transitioning to Recast or Prolia, could be a problem. I was on 3 immunosuppressant meds for over 20 years but had to D/C the Plaquenil (hydroxychloroquine-I would take it again temporarily in a heart beat were I to get Covid-19). I took a bad fall this past year. My foot got caught in my bedskirt and I went down! Ended up on my stomach a few feet away. It was on soft carpet. The bruise was GIGANTIC! But, I fell on a fat pad on my hip and I didn't break a bone!! So wait, I don't get it, technically I should have! Clearly God intervened. Walkikng by faith, Sunnyflower

Jump to this post

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.

REPLY
@lioness

@sunnyflower Ll like you the Dr tried me first on the Alendronate my stomach is sensitive and hurt so much I called her and she said we,d do the Reclast infusion it's once a year. I didn't have any side effects

Jump to this post

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

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

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😊

REPLY
@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.

Jump to this post

Hello Dappy and what a great name! I am so grateful to hear from you and thank you so much for sharing your story.

I just read this morning that if you stop Prolia or I think other bisphosphonates, your risk for fractures increases. Please check with your doctor about this because it can be very serious.

I am very behind on messages and replies so more later but please know I will be praying for you.

Please keep me posted on what you learn and what your doctor says.

Many blessings and peace for your soul, Sunny flower

REPLY
@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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