Significant osteoporosis: I need a bone plan

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

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.

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?

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.

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.

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

Thank you. I used Google Scholar for the first time, from a recommendation on this thread. Its EXACTLY what I need, I really need to feel informed, even if there is a lot that can not be known. I really think Tymlos is my preferred drug, if my endocrinologist agrees and -- the big one - if my insurer will pay for it. I was wondering if anyone has used "Prescription Hope" which seems to provide brand name drugs through discounts. Also wondering if anyone has used an overseas pharmacy to fill Tymlos. Maybe Canada, Mexico or further (I have travelled in Americas, thought maybe Panama would be a place to safely shop for brand name drugs. )

@heyhey, @hopeful33250 Such good news that you found some good research? What did you learn on Google Scholar? I thought I looked there and on the nih site. So....now we need to figure out the finances. There are a series of Specialty Pharmacies in the US. My local pharmacist found one for me, Optum. Significant savings on Tymlos. I don’t know about the others. Overnight delivery.

You know....The manufacturer of Tymlos has a special group composed of nurses and other health care providers. They support clinicians and also patients. Perhaps they would know about unpublished or planned comparative tests. It would be worth a try.

How would you like to proceed? As questions arise, please let us know. Don’t forget to share. That helps others.
Chris