Tymlos for life? My endo is telling me this

thank you for responding. I do actually drink 3 glasses of water and eat before I inject. I think the thing that worked for me was reducing the amount injected and going up to 80 gradually. (But I still drink 3 glasses of water).

The current prescribing information sheet on the Tymlos web site still includes the 2 yr warning:
"2.3 Treatment Duration
The safety and efficacy of TYMLOS have not been evaluated beyond 2 years of treatment. Use
of the drug for more than 2 years during a patient’s lifetime is not recommended."
And even if there has been some sort of recent change, it would be important to confirm any insurance you have will continue to cover. The last RX plan I was on (Cigna) explicitly covered no more than 2 years in a lifetime. And although Cigna gave pre-approval for 2 years, when I switched to Welcare this year they refused to cover the last 3 months - apparently because of the declining effectiveness.

The revision date on the Tymlos sheet that still had the 2 yr limit is December 2023.

Today, I (79-yr old female) will be completing my 2-yr Tymlos injection regime. I have been injecting full dose all along, howver, in between I skipped about day/mo and about 10 days when I was tarvellinf ovresees Dec 2023.

A couple weeks ago, I saw my new Endo (the one who prescribed Tymlos a year ago retired). She looked at my DEXA Jan2022 and July 2023 and routine blood work results over the two years, and wanted me to switch to weekly Fosamax or Reclast annual infusion. After one year, my spine DEXA #s improved greater than hip. my next DEXA is in Oct 2024. My preference is to start Fosamax.

I mentioned to her that FDA has approved extended use of Tymlos past two years (a copy of which was posted on this support group). She had not heard of it. Also, my Fed Aetna insurance unlikely to pay past 2 years. (I think Radius Labs is not actively reaching out medical community and insurance companies.)

Hope this helps.

Whatever support meds you are on for the rest of your life have to correlate with how effective they are and how long they stay effective. SO make sure you are montered ( thorough labs) to confirm the efficacy of the treament. Bone markers are key per my understanding. I have been on tymlos for 16 months; my P1NP ( building) is 90 and CTX( dissolving) is 535. We are all different and have different base lines but That proportion for me is good and the medicine is effective for my spine ( but no changes in hip or forearm). I will retest soon. If P1NP drops to 50 and CXT stays the same, it is time to stop the tymlos and began a medication that reduces the CTX ( usually a bisphosphante).
Now you may have corrlating issuse that a best supported by tymlos for a longer period. But I recommend you understand why. ANswers are indivual and must be best for you.
Meanwhile on the heart palpatations, I too had them early on ( at only 1/2 dose ) rather serverly. The solution was 2 fold - 1) restart at the lowest dose 2 clicks. Stay there for 1-2 weeks and gradually increase each level at 1-2 weeks. 2) Drink coconut water. Drink 3-4 cups throughout the day consistantly. I went throu gallons of it... THis will help cool the body and the intense effect of the medicines release. Its an ayurvedic principle but many allopathic primary care physicnas know of using coconut water for heart palpitations. May best to you and encorage you to ask questions ..... you are your own best advocate. BLessings of health

Thank you for the info on the markers. I am just starting reading about osteoporosis so my knowledge is limited. I am on levothyroxine (had thryoid out) and I think that might be why he said tymlos for life. I don't have palpatations. It's pressure on the heart. But it's finally stopped, and hopefully for good. I will go ahead and try the coconut water though. .... are you still drinking it?

How is this 'forever'/long term tymlos (or forteo for that matter) done? Variation in dosing regimen? Whats his choice of bisphosphonate if needed? Does s/he use bone markers? Please keep us posted @gently. Thanks

@dmshope I like your thoughts on the bone markers. Did you have them monitored throughout Tymlos treatment? What is your planned drug after Tymlos? Thank you!

I had to use the coconut water for about 5-6 months. By that time, my body was making adjustments to the meds. I no longer needed the coconut water. Some people may need to take it longer - some less. After that, I was ok for a time, then started to expereince the side effect of upper stomach pain, bloating and digestive distress - it took again a few months to get this settled down and figure a way to handle the gastric issues. IN my case, my liver does not process medicince or hormones effiecentily - so the substances build up. This I know about myself and for most people would not be an issue. We all have to find our way with in the idiocyncries of our bodies.

I had a good endo at the begiining of my treatment - which was at a crisis point - but I was not knowledgable of OP and did not know about the meds and labs. My endo did not do bone mrkers because was the office policy not to use them . They are a bit complicated to get an accurate test result - so you must get good conousel in how to have it done and what not to take that might effect the result ( the timing of the test is impotant, being off certain supplments is important etc. -- no collagen, no biotin etc - you have to know the protocal)
If you are not yet on medication, make sure I repeat, make sure you have bone markers done to establish your baseline and make sure you know how to get them doen correctly.
I do not yet have a plan for after tymlos - but it is critical in this case to use something or all gains may be revereesed,, Its not so much to seal in gains as it is usually explained - rather it is to subdue the overactive osteoclasts ( bone dissolvers) which stay activated for some time after the meds and continue to eat up bone while bone builders are resting.