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Significant osteoporosis: I need a bone plan

Osteoporosis & Bone Health | Last Active: Nov 27 8:02pm | Replies (117)

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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

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Replies to "Hi there @heyhey, Thank you so much for your post. Now, if I answer these questions..."

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

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.