New osteoporosis diagnosis - please advise?

[Daisys and Diamonds]

Thanks for the links Missy
I’ll read them shortly.

DaisysandDiamonds - I’d get a new doctor in a heartbeat, but the Canadian city I live in has a doctor shortage crisis. An absolute crisis. People have to use walk in clinics because they can’t find a physician to take them on. I am looking around for a new physician, and you go on wait lists that take years.
Thank you for your concern!

oh dear i understand that
we live in a small provincial city and it took us 6 months to find GP with a vacancy
I always thought a diet high in calcium helps bones
do you like cheese and other dairy ?

 

[Wewechew]

I always thought a diet high in calcium helps bones
do you like cheese and other dairy ?

Taking calcium helps prevent osteoporosis, but once you lose the calcium from your bones, your body does not naturally put it back without outside chemical help. At least that is my understanding.

 

[Begonia]

Hi daisys and diamonds


No, dairy products make me feel poorly unfortunately. Calcium absorption and bone (re)formation is poorly understood. Lots of conflicting info.

I’m currently trying a plant - based diet for a short while. I’m getting some calcium from non dairy sources and supplements. Not sure of the long term efficacy of this, but my acid reflux is settling nicely.

Still haven’t gone on Fosamax. Naturopath has me working on settling my acid. Sigh. On a positive note, the gym workouts are going well. Hoping to build some bone strength with that

 

[Daisys and Diamonds]

Hi daisys and diamonds


No, dairy products make me feel poorly unfortunately. Calcium absorption and bone (re)formation is poorly understood. Lots of conflicting info.

I’m currently trying a plant - based diet for a short while. I’m getting some calcium from non dairy sources and supplements. Not sure of the long term efficacy of this, but my acid reflux is settling nicely.

Still haven’t gone on Fosamax. Naturopath has me working on settling my acid. Sigh. On a positive note, the gym workouts are going well. Hoping to build some bone strength with that

well its good the acid reflux is better
have to celebrate the smaller victories
one thing i hate about modern medicine is side effecfs
the cure sometimes seems almost as bad as the problem in the first place

 

[MarionC]

Hi @Begonia
I was diagnosed with osteoporosis at 50. It runs in my family unfortunately. I have always been (still am) very active, jogger, walker, tennis. Take calcium and vitamin D. Anyway, I took Boniva for a few years which is a Bisphosphonate as is Fosamax. Bisphosphonates don't build new bone. They interrupt the remodeling process. They inhibit the osteoclasts from reabsorbing bone, the natural turn over of bone. With Bisphosphonates, Fosamax in particular, you may experience stomach and upper GI and esophageal problems. I now have Prolia injections, which is a different class of drug but basically is also an osteoclast inhibitor. Maybe ask your doctor if you can have Prolia injections, or Reclast infusions. Fosamax is a bit old school with plenty of side effects. First gen in osteoporosis treatment. There are better drugs available. Of course Prolia has it’s own side effects, luckily I’ve had no problems. Injections bypass the whole stomach and esophageal problems.
Be active with weight bearing and resistance exercise, take your calcium and Vit D. We can do all of these things and still have osteoporosis because it’s just in our genes unfortunately. All the best to you!

I’ve been on Prolia for 8 or more years and it’s reversed my bone loss, even though I skipped a few treatments along the way. Only side effect has been an exzema flare a while after the injection.

 

[Begonia]

Had to hold off on Fosamax until I get this root canal done (tomorrow). Fosamax concerns me greatly tho, as reflux is bad right now.
Will check out Prolia!

 

[Bonfire]

I’ve been on Prolia for 8 or more years and it’s reversed my bone loss, even though I skipped a few treatments along the way. Only side effect has been an exzema flare a while after the injection.

That’s great that you are doing so well! I restarted Prolia injections and so far so good!

 

[MarionC]

That’s great that you are doing so well! I restarted Prolia injections and so far so good!

I had a terrible time with the oral medications, continual esophageal pain.
I am wary of ANY meds, especially something taken routinely, but as my doc said, I MAY have a problem with Prolia later on, but a broken hip or back will make things really go down hill fast.

 

[missy]

Bumping this thread up. Diagnosed with osteoporosis of the spine and hips and forearms today. My rheumatologist thinks I need to treat this and after listening to my options I feel that probably my best bet is Reclast. A once yearly infusion.

Curious if anyone here has had this specific treatment. Fosomax etc isn’t good for me because of esophageal side effects. And Prolia (if I’m remembering what he told me....lots of info today and I’m a bit overwhelmed) once you stop taking it you lose bone rapidly. So right now given the info I’m leaning towards Reclast. Just wanted to know if anyone does this treatment.

And @Begonia how are you doing and what did you decide?

Apparently osteoporosis runs in my family. My dad and his sister from relatively young ages had osteoporosis. Add to that the fact I’m thin and it’s a recipe for disaster I guess. Hopeful there are meds that will help with minimal side effects. I’m so active and would hate to have that curtailed due to this.


@Bonfire @Jimmianne how goes it with your Prolia treatments?

 

[Elizabeth35]

I also had osteoporosis diagnosed this last year. Had been osteopenia for several years and taking Calcium/vitamin D3 and doing weight-bearing exercise. Family history on both sides so I had regular dexa scans since early 40's.
I started on Prolia injections prescribed by my gyne who is managing this. Zero side effects but I am not by any means someone who looks for side effects.

From what I have read, Reclast is once a year IV infusion and is a bisphosphonate (zoledronic acid). So it may have gastro side effects? Also has potential side effect of flu-like symptoms immediately following injection. But if that was the best drug for me I would just suck up a day or two of not feeling well.
Prolia (denosumab) is a twice a year injection and works differently as it is monoclonal antibody. Some studies shows it is perhaps more effective at rebuilding spinal bone mass density (BMD).
I simply did what my gyne recommended without exploring options, but I will ask her next visit about Reclast so I can compare.

Take time to research the options and then work with whichever health care provider is managing this issue to make a decision.

I have seen first hand that it can be life altering, if not life ending, to suffer a spinal or hip fracture. So I took my diagnosis very seriously and feel it is not something that to take any risks with. Not treating this diagnosis was not even an option to me.

Good luck finding the best treatment for you!

 

[Daisys and Diamonds]

Bumping this thread up. Diagnosed with osteoporosis of the spine and hips and forearms today. My rheumatologist thinks I need to treat this and after listening to my options I feel that probably my best bet is Reclast. A once yearly infusion.

Curious if anyone here has had this specific treatment. Fosomax etc isn’t good for me because of esophageal side effects. And Prolia (if I’m remembering what he told me....lots of info today and I’m a bit overwhelmed) once you stop taking it you lose bone rapidly. So right now given the info I’m leaning towards Reclast. Just wanted to know if anyone does this treatment.

And @Begonia how are you doing and what did you decide?

Apparently osteoporosis runs in my family. My dad and his sister from relatively young ages had osteoporosis. Add to that the fact I’m thin and it’s a recipe for disaster I guess. Hopeful there are meds that will help with minimal side effects. I’m so active and would hate to have that curtailed due to this.


@Bonfire @Jimmianne how goes it with your Prolia treatments?

Oh Missy
This is no good
im sorry to hear this
but good there is treatment options

Come visit me and I'll fatten you up.- just ask Borris or Tibby

 

[Bonfire]

Bumping this thread up. Diagnosed with osteoporosis of the spine and hips and forearms today. My rheumatologist thinks I need to treat this and after listening to my options I feel that probably my best bet is Reclast. A once yearly infusion.

Curious if anyone here has had this specific treatment. Fosomax etc isn’t good for me because of esophageal side effects. And Prolia (if I’m remembering what he told me....lots of info today and I’m a bit overwhelmed) once you stop taking it you lose bone rapidly. So right now given the info I’m leaning towards Reclast. Just wanted to know if anyone does this treatment.

And @Begonia how are you doing and what did you decide?

Apparently osteoporosis runs in my family. My dad and his sister from relatively young ages had osteoporosis. Add to that the fact I’m thin and it’s a recipe for disaster I guess. Hopeful there are meds that will help with minimal side effects. I’m so active and would hate to have that curtailed due to this.


@Bonfire @Jimmianne how goes it with your Prolia treatments?

So far so good @missy. I haven’t experienced any, or lets say any noticeable side effects with my Prolia injections. Sorry, osteoporosis isn’t a club you want to join, but I’m glad you and your doctor are being proactive.

 

[missy]

I also had osteoporosis diagnosed this last year. Had been osteopenia for several years and taking Calcium/vitamin D3 and doing weight-bearing exercise. Family history on both sides so I had regular dexa scans since early 40's.
I started on Prolia injections prescribed by my gyne who is managing this. Zero side effects but I am not by any means someone who looks for side effects.

From what I have read, Reclast is once a year IV infusion and is a bisphosphonate (zoledronic acid). So it may have gastro side effects? Also has potential side effect of flu-like symptoms immediately following injection. But if that was the best drug for me I would just suck up a day or two of not feeling well.
Prolia (denosumab) is a twice a year injection and works differently as it is monoclonal antibody. Some studies shows it is perhaps more effective at rebuilding spinal bone mass density (BMD).
I simply did what my gyne recommended without exploring options, but I will ask her next visit about Reclast so I can compare.

Take time to research the options and then work with whichever health care provider is managing this issue to make a decision.

I have seen first hand that it can be life altering, if not life ending, to suffer a spinal or hip fracture. So I took my diagnosis very seriously and feel it is not something that to take any risks with. Not treating this diagnosis was not even an option to me.

Good luck finding the best treatment for you!

Thank you @Elizabeth35 and so glad you are doing well!

Do you know if it is true once we stop the treatment (ie Prolia) bone loss is more rapid? I am trying to find out the facts and sorting out the myths from the truths. It seems some treatments stay longer than others once we stop them.

All the meds have side effects but it's finding the ones that make sense for us of course and choosing the lesser of the evils for each individual. It seems Prolia is a good option but for that one question I have and I cannot seem to yet find the answer. My rheumatologist said it is not highlighted but that once we stop treatment bone loss (can be) more rapid. Truer with some treatments and not true with others.

How many years have you been on Prolia? Do you take a break from it?

I absolutely agree we have to do what we need to do in order to maintain quality of life and a spinal fracture would be horrible. Not treating is not an option for me either. Thanks for all your helpful info! And best wishes for continued success!

 

[missy]

So far so good @missy. I haven’t experienced any, or lets say any noticeable side effects with my Prolia injections. Sorry, osteoporosis isn’t a club you want to join, but I’m glad you and your doctor are being proactive.

That is wonderful @Bonfire I am so glad you are doing well with treatment. No, not a club I wanted to join lol but I know I am in good company. Did your doctor tell you once you stop Prolia if the benefits remain? How long have you been taking the injections and do you need to take a break after a few years? Any additional info you can share is greatly appreciated. Thank you @Bonfire and best wishes for continued success!

 

[missy]

Oh Missy
This is no good
im sorry to hear this
but good there is treatment options

Come visit me and I'll fatten you up.- just ask Borris or Tibby

Haha thank you. I will be right over. Is it OK if I bring Oliver?

 

[Elizabeth35]

Missy-just had one injection of the Prolia. I will ask my gynecologist about bone loss if Prolia is discontinued. That would be a major consideration, obviously.

I'm thankful we have treatment options that were unavailable for previous generations.
Take care and find the solution that works best for your body!

 

[missy]

Thanks @Elizabeth35 and wishing all the best to you as well. I agree it’s a wonderful time we live in for treating and managing diseases that in the past had little or no good treatment options.

 

[lyra]

I hope the once yearly infusion helps @missy . I have all sorts of other arthritis, and my rheumatologist is my hero. Seriously couldn't manage without the guy.

 

[Daisys and Diamonds]

Haha thank you. I will be right over. Is it OK if I bring Oliver?

If you ever venture down this way you are all most welcome to stay with us - and im most genuine in that sentiment
I have already sussed out the local no dairy ice cream situation

But Ollie has to be up first for breakfast because Tibby loves breakfast

 

[Begonia]

Bumping this thread up. Diagnosed with osteoporosis of the spine and hips and forearms today. My rheumatologist thinks I need to treat this and after listening to my options I feel that probably my best bet is Reclast. A once yearly infusion.

Curious if anyone here has had this specific treatment. Fosomax etc isn’t good for me because of esophageal side effects. And Prolia (if I’m remembering what he told me....lots of info today and I’m a bit overwhelmed) once you stop taking it you lose bone rapidly. So right now given the info I’m leaning towards Reclast. Just wanted to know if anyone does this treatment.

And @Begonia how are you doing and what did you decide?

Apparently osteoporosis runs in my family. My dad and his sister from relatively young ages had osteoporosis. Add to that the fact I’m thin and it’s a recipe for disaster I guess. Hopeful there are meds that will help with minimal side effects. I’m so active and would hate to have that curtailed due to this.


@Bonfire @Jimmianne how goes it with your Prolia treatments?

Hi missy! Sorry to hear about your diagnosis!! It really shook me up and still does to be honest, so my thoughts are with you. I was supposed to start Fosamax several months ago, but had a root canal (Fosamax delays healing) and my acid reflux is really bad right now, so I’ve not started anything. I doubt I’ll be able to tolerate Fosamax anyway. Soooo, in short am very interested in your decision too.

It’s time for my yearly physical so time to revisit what to do about densifying these bones. Please keep us in the loop about what you learn? My doctor is a dinosaur (and not a very good one) so your info will help me too.

 

[missy]

Hi missy! Sorry to hear about your diagnosis!! It really shook me up and still does to be honest, so my thoughts are with you. I was supposed to start Fosamax several months ago, but had a root canal (Fosamax delays healing) and my acid reflux is really bad right now, so I’ve not started anything. I doubt I’ll be able to tolerate Fosamax anyway. Soooo, in short am very interested in your decision too.

It’s time for my yearly physical so time to revisit what to do about densifying these bones. Please keep us in the loop about what you learn? My doctor is a dinosaur (and not a very good one) so your info will help me too.

I will keep you posted and please let me know how it goes with you.

I cannot take Fosamax due to my esophageal sensitive and from my research so far Prolia seems like it is not a good idea for me. One it causes skin reactions (My skin is already hyper reactive) and more importantly once we stop Prolia the bone loss is rapid. My rheumatologist said it is not spoken of but it is a fact. Very scary choices.

And then the one I was considering (IV infusion once a year) might or might not be a good idea. More reading needs to be done on my part but my issue is trusting the sources. Really do not know what I am going to do at this point.

I joined a few FB groups and perhaps if you have not maybe you should consider joining as well. Lots of patient experience on these groups.

I haven't had much time to explore as we have been very busy since my diagnosis but will take time in the next week and do my best to "bone" up (hahaha couldn't resist) on the facts vs myths re osteoporosis and the treatments.

Good luck and let's keep each other in the loop. Best wishes for a speedy recover from your root canal. (((Hugs))).

 

[missy]

If you ever venture down this way you are all most welcome to stay with us - and im most genuine in that sentiment
I have already sussed out the local no dairy ice cream situation

But Ollie has to be up first for breakfast because Tibby loves breakfast

Hahaha thank you sweet @Daisys and Diamonds !!! Much appreciated and same here. If you ever find yourself in my neck of the woods you are more than welcome! And we never sleep in my household so no worries. Oliver will be right there to get all the food. He is never satiated. Sigh.

 

[missy]

I hope the once yearly infusion helps @missy . I have all sorts of other arthritis, and my rheumatologist is my hero. Seriously couldn't manage without the guy.

Thanks @lyra ! I am very happy you have such a great rheumatologist. My rheumatologist is my mom's doctor and she loves him. I have only seen him once before (2004) and that bone scan showed my bones were good. I have experienced much loss in the past 16 years. I am waiting for my rheumatologist to call me Tuesday probably with blood results from my visit with him. He said he would absolutely recommend I start on an osteoporosis med. That I should not ignore this. I am sorry you are dealing with so much on your plate but relieved you have a good medical team to help you manage it. Thanks for chiming in and all the best to you.

 

[missy]

@Begonia and anyone else interested:

I’m looking into starting weights again as I discontinued that in 2014 after I broke my leg. I was never motivated to resume. I loathe weight lifting but i think I must resume. Looking into hiring a private trainer to help me so I don’t hurt myself.


***Also wanted to add you should look into vitamin K (I think we discussed it before). Both MK-4 and MK-7.

Only MK 4 has demonstrated building bone mass though both are important. I’m just starting that research as I didn’t know the MK-4 form was critical. And it seems after reading government studies it might be challenging to find a supplement that contains the necessary dose of MK4 that has shown to be beneficial. So far I can’t fimd supplements high enough in MK4.

Vitamin K and Fractures - NBI

nbihealth.com

 

[missy]

Did I share this here? A good summary.

Osteoporosis: A Review of Treatment Options

It is from 2018 so there might be newer treatments.

 

[missy]

FYI:

Osteoporosis and Exercise – Activities, Guidelines, Research, and Insights from Physical Therapist and Polestar Pilates Educator Sherri Betz

Sherri Betz, PT shares research and information on exercise and osteoporosis. Discover the best fitness activities and exercises to improve bone density.

www.centerworks.com

Be Bone Strong™ – Exercise to Stay Healthy - Bone Health & Osteoporosis Foundation

Osteoporosis Exercise Examples The following exercises promote good posture, strength, movement, flexibility and balance in healthy people as well as those with osteoporosis. If you’ve recently broken a bone or if you have very low bone density, discuss these exercises with your physical...

americanbonehealth.org

Safe Movement & Exercise Videos - Bone Health & Osteoporosis Foundation

It is important to avoid unintentional injuries, especially those of the spine, which may occur with everyday activities. The following video series shows how simple changes can be made to help keep you healthy and active.

www.nof.org

Osteoporosis Exercise for Strong Bones - Bone Health & Osteoporosis Foundation

There are two types of osteoporosis exercises that are important for building and maintaining bone density: weight-bearing and muscle-strengthening exercises. Weight-bearing Exercises These exercises include activities that make you move against gravity while staying upright. Weight-bearing...

www.nof.org

 

[missy]

Hope this shows up.
"Drug treatments...finding the medication that is right for you".

 

[missy]

For those of you who are interested...I always like to read as much as possible from reputable sources before deciding on a treatment plan when it comes to a serious issue. Please feel free to ignore obviously and hope @Begonia you do not mind me sharing on your thread.

 

[missy]

And some of the treatments in depth explanation.
Not a complete list. If you have a med you want me to find info for please don't hesitate to ask me.

 

[missy]

To be continued...have to go offline now.