significant osteoporosis : need a bone plan

Posted by heyhey @heyhey, Nov 15, 2020

60 y/o , fit and active (I thought) but my first bone scan showed osteoporosis in spine (-3.3). Want to start Evenity, Tyblos, or Forteo. Its really the first health issue I've had in my life, and I'm kind of stumped. How can I find reliable third party research into their relative risks & efficacy — only research I can find online is done by the companies themselves.

Liked by fiesty76

Try nice national institute of clinicsl exellemce its how in the uk drigs are appoved cost re effectiveness and appeoved or not for nhs use

Liked by fiesty76

REPLY

Good evening, @heyhey, Welcome to Connect. Osteoporosis is an active discussion on Connect. Many of us face the realities of aging when our bones and bodies just don't support regrowth as efficiently as they did when we were younger. All of us age differently and all of us need to consider a bone plan as we are all living longer and we have to keep up with our grandkids.

I have been particularly interested in osteoporosis and will be completing 18 mos of Tymlos in December. This coming Friday I have my first DEXascan since beginning treatment 18 months ago. I am excited and a bit apprehensive. After Tymlos or Forteo, we, as patients need to decide what our next step will be. We have spent up to 2 years building bone and now we have to maintain it.

In my case, I am severely allergic to the biosophonates, so will have to look at something else. Thereby….the apprehension.

In different discussions you will see many questons being explored and experiences being shared. I am first going to ask for your discussion to be moved to one with appropriate contributors to help you.

May you be content and at peace.
Chris

REPLY

Hello @heyhey and welcome to Mayo Clinic Connect. We are glad that you have posted about osteoporosis. There are many of us who are dealing with the decision of how to best treat this problem. Here is a link to some information from Mayo Clinic's website that you might find interesting, https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869

Here are some of the discussions on Connect that Chris, @artscaping, mentioned in her post above.

– Osteopenia: AlgaeCal Plus, strontium citrate & other treatments: https://connect.mayoclinic.org/discussion/question-5/
– Osteoporosis treatment or strontium citrate?: https://connect.mayoclinic.org/discussion/osteoporosis-treatment-or-strontium-citrate/

You may also be interested in the following article by American Bone Health Organization – Why Strontium Is Not Advised for Bone Health: https://americanbonehealth.org/medications-bone-health/why-strontium-is-not-advised-for-bone-health/

An endocrinologist is the best type of specialist to assist you as you move through the decisions on your osteoporosis treatment. Are you working with an endocrinologist now?

REPLY
@artscaping

Good evening, @heyhey, Welcome to Connect. Osteoporosis is an active discussion on Connect. Many of us face the realities of aging when our bones and bodies just don't support regrowth as efficiently as they did when we were younger. All of us age differently and all of us need to consider a bone plan as we are all living longer and we have to keep up with our grandkids.

I have been particularly interested in osteoporosis and will be completing 18 mos of Tymlos in December. This coming Friday I have my first DEXascan since beginning treatment 18 months ago. I am excited and a bit apprehensive. After Tymlos or Forteo, we, as patients need to decide what our next step will be. We have spent up to 2 years building bone and now we have to maintain it.

In my case, I am severely allergic to the biosophonates, so will have to look at something else. Thereby….the apprehension.

In different discussions you will see many questons being explored and experiences being shared. I am first going to ask for your discussion to be moved to one with appropriate contributors to help you.

May you be content and at peace.
Chris

Jump to this post

Thanks. Can I ask 2 questions about Tymlos (a) are you going to post about your scan results and how would I be sure to see your post (b) while on Tymlos, assuming there are no major side effects or events, how often do you get blood tests, bone scans or other . I want to have an idea of how much the "other" will cost. ALSO if you don't mind, if you are going on a longer vacation (3+weeks) how do you manage so that you time your rx refill to begin just before your trip? I am assuming you can only get 30 day refill so not sure what happens if your refill is going to end during your vacation/travel. I realize no one is planning travel now with covid 19 but I usually visit my family for a month every year. How would I get enough Tymlos to cover the trip?.

REPLY
@hopeful33250

Hello @heyhey and welcome to Mayo Clinic Connect. We are glad that you have posted about osteoporosis. There are many of us who are dealing with the decision of how to best treat this problem. Here is a link to some information from Mayo Clinic's website that you might find interesting, https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869

Here are some of the discussions on Connect that Chris, @artscaping, mentioned in her post above.

– Osteopenia: AlgaeCal Plus, strontium citrate & other treatments: https://connect.mayoclinic.org/discussion/question-5/
– Osteoporosis treatment or strontium citrate?: https://connect.mayoclinic.org/discussion/osteoporosis-treatment-or-strontium-citrate/

You may also be interested in the following article by American Bone Health Organization – Why Strontium Is Not Advised for Bone Health: https://americanbonehealth.org/medications-bone-health/why-strontium-is-not-advised-for-bone-health/

An endocrinologist is the best type of specialist to assist you as you move through the decisions on your osteoporosis treatment. Are you working with an endocrinologist now?

Jump to this post

Thank you. I immediately self referred myself to an endocrinologist after I reviewed by bone scan. He wants me to consider Evenity, Forteo and Tymlos (pretty much in that order). I feel that Evenity has not provided evidence of efficacy over Forteo or Tymlos , plus its mode of action is quite different and has had little time on market to identify long term side effects. Do you know of any research comparing Forteo to Tymlos? My number are bad in spine, less bad in hips. Also, do you have any links to explain how to manage risk of spinal fractures (aside from medication, diet, exercise), example, whether I can continue to dive, cycle, run, wrastle with pet dogs, that sort of thing.

REPLY

Hi there @heyhey, Thank you so much for your post. Now, if I answer these questions to the best of my ability, I will have a few questions for you. I want to make sure I target my responses to your specific situation. Not that I know everything……..just a thing or two.

Let’s see….#1 for everyone including me……will I post my results. My appointment with my endocrinologist is December 3. I would like to wait until I have a chance to discuss all of the tests with her. We are also watching my D3 and Calcium levels which can impact the ability to maintain bone strength.

Now to your other questions. These will be my first tests…..at 18 months. Seems like a long time to wait. All of those tests are covered by my insurance. What is hard to get covered is the costs of the Tymlos although it is getting better, it depends on your insurance. Your best bet is to use a Specialty Pharmacy like Optum.

Regarding vacations. With the Covid situation, my clinician requested 90 day refills for me so I didn’t have to worry. Other than the fact that you may have more to pay up front…..you will be assured that you have your medication when needed. When it was touch and go, she and her staff called around to other colleagues to find a fill in for me. Isn’t that amazing?

When traveling, just remember that Tymlos must be refrigerated until the first use from a new pen. Then it can stay at room temperature.

You can make sure to see my post by coming back to this discussion. We will bring the information and the other members with their experience to you rather than moving your discussion. You will receive a notification whenever there is a post to you or that includes you as long as your alias @heyhey is used in the response. Theresa @hopeful33250 is also a Connect mentor and has already responded with some additional information. Thanks Theresa.

Would you please take a minute to tell me why you were considering one of the two bone builder products, Tymlos or Forteo? There is a relatively new product in this category and that is Evenity. It’s claim to fame is that it can do both the bone building and the bone maintenance. One member had to work hard to get her insurance to cover it and we are waiting for her to let us know how it is going.

We have other folks who have chosen a diet change and exercise program without medication.

Do you have any other chronic conditions with which you are dealing right now? Are you active physically?

May you have happiness and the causes of happiness.
Chris

REPLY
@artscaping

Hi there @heyhey, Thank you so much for your post. Now, if I answer these questions to the best of my ability, I will have a few questions for you. I want to make sure I target my responses to your specific situation. Not that I know everything……..just a thing or two.

Let’s see….#1 for everyone including me……will I post my results. My appointment with my endocrinologist is December 3. I would like to wait until I have a chance to discuss all of the tests with her. We are also watching my D3 and Calcium levels which can impact the ability to maintain bone strength.

Now to your other questions. These will be my first tests…..at 18 months. Seems like a long time to wait. All of those tests are covered by my insurance. What is hard to get covered is the costs of the Tymlos although it is getting better, it depends on your insurance. Your best bet is to use a Specialty Pharmacy like Optum.

Regarding vacations. With the Covid situation, my clinician requested 90 day refills for me so I didn’t have to worry. Other than the fact that you may have more to pay up front…..you will be assured that you have your medication when needed. When it was touch and go, she and her staff called around to other colleagues to find a fill in for me. Isn’t that amazing?

When traveling, just remember that Tymlos must be refrigerated until the first use from a new pen. Then it can stay at room temperature.

You can make sure to see my post by coming back to this discussion. We will bring the information and the other members with their experience to you rather than moving your discussion. You will receive a notification whenever there is a post to you or that includes you as long as your alias @heyhey is used in the response. Theresa @hopeful33250 is also a Connect mentor and has already responded with some additional information. Thanks Theresa.

Would you please take a minute to tell me why you were considering one of the two bone builder products, Tymlos or Forteo? There is a relatively new product in this category and that is Evenity. It’s claim to fame is that it can do both the bone building and the bone maintenance. One member had to work hard to get her insurance to cover it and we are waiting for her to let us know how it is going.

We have other folks who have chosen a diet change and exercise program without medication.

Do you have any other chronic conditions with which you are dealing right now? Are you active physically?

May you have happiness and the causes of happiness.
Chris

Jump to this post

@heyhey…….here is an introduction to a discussion on Evenity.
https://connect.mayoclinic.org/discussion/evenity/?utm_campaign=search#new-comment.

REPLY

@heyhey………and here is the discussion on Forteo vs Tymlos.
https://connect.mayoclinic.org/discussion/forteo-vs-tymlos-1/?utm_campaign=search
You will find that these discussions can sort of wind around all the areas of Bones and Joints. You can use the search bar at the top of the page….with the magnifying glass. Just enter "osteoporosis" which tends to permeate a number of discussions. Then come back to look for more specific or targeted posts.

Have a lovely evening……
Chris

REPLY
@heyhey

Thank you. I immediately self referred myself to an endocrinologist after I reviewed by bone scan. He wants me to consider Evenity, Forteo and Tymlos (pretty much in that order). I feel that Evenity has not provided evidence of efficacy over Forteo or Tymlos , plus its mode of action is quite different and has had little time on market to identify long term side effects. Do you know of any research comparing Forteo to Tymlos? My number are bad in spine, less bad in hips. Also, do you have any links to explain how to manage risk of spinal fractures (aside from medication, diet, exercise), example, whether I can continue to dive, cycle, run, wrastle with pet dogs, that sort of thing.

Jump to this post

Hello @heyhey,

I'm glad to hear that you are seeing an endocrinologist. Have you had a blood test to check for the functioning of your parathyroid (different from the thyroid)? That is a very important thing to check. Also, your Vitamin D level should be checked.

No, I do not have information on meds and their efficacy at this time. Like you, I'm just starting on this journey. I have taken Evista for a number of years and it has helped the bone loss in the spine, but not so much in the hip. I'll be meeting with my endocrinologist to discuss alternative meds. I'll keep you posted on what I learn and decide.

Have you thought of seeing a physical therapist or getting a personal trainer regarding appropriate exercise?

REPLY
@hopeful33250

Hello @heyhey,

I'm glad to hear that you are seeing an endocrinologist. Have you had a blood test to check for the functioning of your parathyroid (different from the thyroid)? That is a very important thing to check. Also, your Vitamin D level should be checked.

No, I do not have information on meds and their efficacy at this time. Like you, I'm just starting on this journey. I have taken Evista for a number of years and it has helped the bone loss in the spine, but not so much in the hip. I'll be meeting with my endocrinologist to discuss alternative meds. I'll keep you posted on what I learn and decide.

Have you thought of seeing a physical therapist or getting a personal trainer regarding appropriate exercise?

Jump to this post

Hello, i have my annual checkup with full blood panel coming up. I will ask my endocrinologist what specific tests should be added (I always get tested for Vit D but, I'll ask about parathyroid). When you say that Evista helped bone loss in spine, may I ask, do you mean it increased bone density or that it slowed bone loss. I can certainly get a personal trainer re exercise although, I was hoping for a good reference book. Also although it seems I will have to stop jogging, I hope that t continue my exercises of walking, stair climbing, weights/resistance, biking, swimming (I know the last two are not bone strengthening but I love them). If you have found any books helpful I would love any recommendations.

REPLY
@artscaping

Hi there @heyhey, Thank you so much for your post. Now, if I answer these questions to the best of my ability, I will have a few questions for you. I want to make sure I target my responses to your specific situation. Not that I know everything……..just a thing or two.

Let’s see….#1 for everyone including me……will I post my results. My appointment with my endocrinologist is December 3. I would like to wait until I have a chance to discuss all of the tests with her. We are also watching my D3 and Calcium levels which can impact the ability to maintain bone strength.

Now to your other questions. These will be my first tests…..at 18 months. Seems like a long time to wait. All of those tests are covered by my insurance. What is hard to get covered is the costs of the Tymlos although it is getting better, it depends on your insurance. Your best bet is to use a Specialty Pharmacy like Optum.

Regarding vacations. With the Covid situation, my clinician requested 90 day refills for me so I didn’t have to worry. Other than the fact that you may have more to pay up front…..you will be assured that you have your medication when needed. When it was touch and go, she and her staff called around to other colleagues to find a fill in for me. Isn’t that amazing?

When traveling, just remember that Tymlos must be refrigerated until the first use from a new pen. Then it can stay at room temperature.

You can make sure to see my post by coming back to this discussion. We will bring the information and the other members with their experience to you rather than moving your discussion. You will receive a notification whenever there is a post to you or that includes you as long as your alias @heyhey is used in the response. Theresa @hopeful33250 is also a Connect mentor and has already responded with some additional information. Thanks Theresa.

Would you please take a minute to tell me why you were considering one of the two bone builder products, Tymlos or Forteo? There is a relatively new product in this category and that is Evenity. It’s claim to fame is that it can do both the bone building and the bone maintenance. One member had to work hard to get her insurance to cover it and we are waiting for her to let us know how it is going.

We have other folks who have chosen a diet change and exercise program without medication.

Do you have any other chronic conditions with which you are dealing right now? Are you active physically?

May you have happiness and the causes of happiness.
Chris

Jump to this post

Thanks very much for your reply. May I ask, is there a reason that one would wait 18 months after starting Tymlos or other drug for a followup bone scan? Is it an insurance issue? I would have thought that annual tests would be required because, if a treatment isn't working, it would allow the treatment plan to change.

Thanks for information on refills. I thought it would be only 30 day refill so thats a relief.

My endocrinologist suggested Evenity, Forteo or Tymlos (in that order). I personally felt that Evenity was too new, with an unusual mode of action, and that I would like a drug that had a longer time in market. Also, I cannot find anything suggesting that Evenity is better particularly at bone building. But, again, I'm having trouble finding research reports on any of them.

I would have trouble making any impact with diet, because I already eat a whole, organic diet. I get quite a lot of dietary calcium. I can increase exercise but, was already pretty active (ie 5 days/week).

The one thing I am considering is adding HRT to standard treatment of Evenity, Forteo or Tymlos. My endocrinologist supports that , with the usual cautions/about the risks. I had an early menopause which I believe contributed to osteoporosis. But at the time HRT was getting a really bad rap and several doctors refused to prescribe it because I had no menopausal symptoms. I should have insisted.

I have to say I'm also super depressed about the diagnosis. Which is probably what everyone feels at the time. I am 60 but have the bones of an 84 year old.

REPLY
@heyhey

Hello, i have my annual checkup with full blood panel coming up. I will ask my endocrinologist what specific tests should be added (I always get tested for Vit D but, I'll ask about parathyroid). When you say that Evista helped bone loss in spine, may I ask, do you mean it increased bone density or that it slowed bone loss. I can certainly get a personal trainer re exercise although, I was hoping for a good reference book. Also although it seems I will have to stop jogging, I hope that t continue my exercises of walking, stair climbing, weights/resistance, biking, swimming (I know the last two are not bone strengthening but I love them). If you have found any books helpful I would love any recommendations.

Jump to this post

Hello @heyhey,

I have not researched the bone loss matter. I have a number of chronic health conditions the take up my time and the bone loss matter has been put to the side. Perhaps others in this discussion group may have books to recommend.

Since books tend to get outdated quite quickly when research brings new information to light, I've found that researching on the internet can bring you the most recent information as long as you use websites that are reputable. The National Osteoporosis Foundation website might be a good place to start. Here is the link to that website, https://www.nof.org/. Also, Google Scholar is used by a lot of members of Connect to get the most recent health information about many different medications and/or health problems.

Here is some information from Mayo Clinic's website about Hyperparathyroidism, https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194. As you can see, one of the first indications listed is Osteoporosis.

What method of research are you using the most?

REPLY
@hopeful33250

Hello @heyhey,

I have not researched the bone loss matter. I have a number of chronic health conditions the take up my time and the bone loss matter has been put to the side. Perhaps others in this discussion group may have books to recommend.

Since books tend to get outdated quite quickly when research brings new information to light, I've found that researching on the internet can bring you the most recent information as long as you use websites that are reputable. The National Osteoporosis Foundation website might be a good place to start. Here is the link to that website, https://www.nof.org/. Also, Google Scholar is used by a lot of members of Connect to get the most recent health information about many different medications and/or health problems.

Here is some information from Mayo Clinic's website about Hyperparathyroidism, https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194. As you can see, one of the first indications listed is Osteoporosis.

What method of research are you using the most?

Jump to this post

I'm researching online. However for the RX issue, I can't seem to find any comparative studies that look at Evenity vs Forteo or Tymlos vs Forteo — aside from research conducted by the companies themselves which, i think, would be somewhat biased. I will def try National Osteoporosis Foundation although, I wouldn't think they would publish research comparing on-market drugs. I'll try Google Scholar. Thanks for those suggestions.

REPLY
@heyhey

I'm researching online. However for the RX issue, I can't seem to find any comparative studies that look at Evenity vs Forteo or Tymlos vs Forteo — aside from research conducted by the companies themselves which, i think, would be somewhat biased. I will def try National Osteoporosis Foundation although, I wouldn't think they would publish research comparing on-market drugs. I'll try Google Scholar. Thanks for those suggestions.

Jump to this post

@heyhey,

As you look for drug comparisons, remember that everyone reacts differently to meds. You may not be able to "research" how a drug will work for you.

I wish you well as you begin your research. I know how important it is to educate yourself as much as possible when you are facing a chronic condition like this. The more you know, the better you can advocate for yourself.

I'm just wondering, have there been others in your family with osteoporosis or hyperparathyroidism?

REPLY
@heyhey

Thanks very much for your reply. May I ask, is there a reason that one would wait 18 months after starting Tymlos or other drug for a followup bone scan? Is it an insurance issue? I would have thought that annual tests would be required because, if a treatment isn't working, it would allow the treatment plan to change.

Thanks for information on refills. I thought it would be only 30 day refill so thats a relief.

My endocrinologist suggested Evenity, Forteo or Tymlos (in that order). I personally felt that Evenity was too new, with an unusual mode of action, and that I would like a drug that had a longer time in market. Also, I cannot find anything suggesting that Evenity is better particularly at bone building. But, again, I'm having trouble finding research reports on any of them.

I would have trouble making any impact with diet, because I already eat a whole, organic diet. I get quite a lot of dietary calcium. I can increase exercise but, was already pretty active (ie 5 days/week).

The one thing I am considering is adding HRT to standard treatment of Evenity, Forteo or Tymlos. My endocrinologist supports that , with the usual cautions/about the risks. I had an early menopause which I believe contributed to osteoporosis. But at the time HRT was getting a really bad rap and several doctors refused to prescribe it because I had no menopausal symptoms. I should have insisted.

I have to say I'm also super depressed about the diagnosis. Which is probably what everyone feels at the time. I am 60 but have the bones of an 84 year old.

Jump to this post

Good evening @heyhey and @hopeful33250, I want to include Theresa in our chat since we all are on the same hunt for answers. So where are we tonight? Unfortunately, I was unable to find product comparative research. All of the studies so far appear to have been placebo comparative. There are some clinical studies underway and so far the improvement to be found in actual bone density doesn't appear to vary that much from Forteo to Tymlos It is hard to line up women/men with similar presenting issues….everyone is so different.

The reason for a 2 year limit on the bone building twosome….Forteo and , is because after two years the improvement achieved flattens out and the osteoporosis situation reverses itself. My endocrinologist suggested that we stop at 18 months so that we would have longer to find a viable candida for the next step, preserving the progress. As you recall…I am severely allergic to the biosophonates. I am also moving very quickly toward 79 years old. My expectations may pale by comparison to what yours are likely to be at 20 years younger and physically active.

Let's just all keep searching and sharing. You can start @heyhey. Where do we go from here?

May you have contentment and ease.
Chris

REPLY
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