Significant osteoporosis: I need a bone plan

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

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

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?

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?.

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.

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

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

@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

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?

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.