What comes after Evenity?
I have been been on Fosamax for 6 years total starting in 2009 with various drug holidays during the years. I was on Raloxifene for 3 years. Started Evenity in June. What are people taking after the year of Evenity is up?
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No, I didn’t have any side effects. Apparently I’m one of those people that just doesn’t seem to be affected by most medications. I did however, get approval from my cardiologist before beginning.
@gently and @njx58 the black box warning was lifted for Tymlos but not the two year limit. They are not the same thing.
It took a lot of money and patients and time to lift the two year limit on Forteo and I have read that it is doubtful that Radius will do the same for Tymlos.
That doesn't mean some doctors aren't doing more than 2 years but the limit is still on.
@rjx58 my bone markers would have seemed to indicate Tymlos was no longer that effective after 18 months and both my endos agreed. I stayed on another 6 months while I decided on next steps and both endos told me that would at least keep me steady.
Some on this forum have suggested that after a break, these anabolics might be effective again. I speculate that we will be doing shorter courses of these as well as Evenity with some bisphosphonates in between, possibly, so that we can get the most out of whatever time limit we are dealing with and also stretch treatment out. But who know.
ps @gently they have established that the risk of osteosarcoma with two years of use for Tymlos is no longer a concern that merits the black box warning. However they have not established that there is no risk with longer than two years. That is what Lily established for Forteo.
Recommendation guidelines remain restrictive for Forteo as they do for Tymlos. These guidelines are offered by different endocrinology groups. It may be that the guidelines are depending upon clinicals. But the black box restriction against extended use was lifted on Tymlos because of results with Forteo.
The guidelines with Forteo cite careful selection of patients with persistent low bone density.
There is no question Forteo saved my life. I had signed up for MAID as nothing was working and I was fracturing laying in bed! Forteo finally kicked in, and my spine started to recover. Very greatful. However, I did contact Forteo myself regarding redoing a course of this. I had done the full 24 months 5 years ago. They told me very clearly: "You need to look at other options". This was through the nursing line the I still had a care card for. She also told me they were shutting down as of Dec 2024. So that is why I will be starting Evenity. IF I can get paperwork sorted, as I cannot afford $800.00 a month.
Broken13, Evenity could work out well for you. My own preference would be Forteo. There is a discount with https://therxadvocates.com/ You might call and see if your income qualifies. You can't use insurance with it, even if you have prescription insurance. It was $80 a month, which is still a lot of money. You might call; they'll tell you quickly if your income is too high. I try to keep the cost down by purchasing Forteo in other countries .
The nursing line may have a registered RN, but even some of the endocrinologist remain unaware that you can take additional years of Forteo. It may be that the care card has a limit on the years of coverage. Those limits wouln't affect your use at RX Advocates. You just need a doctor's prescription and proof of low income.
It is very nice to hear "Forteo saved my life."
Bless your path with luck.
Hi Gently.
I took forteo for two years, then alendronate for 5 years. Just finished Evenity 45 days ago and hady first injection of prolia. I was thinking evenity again but do you think forteo would work for me or does the alendronate minimize any gains.y intention is to do one year of prolia and buy some time by going on an anabolic again. I am 76 now and would feel much better about staying on prolia for the rest of my life if I am 80 when I start taking it again. Thoughts?
@broken13 was the provider unaware that Forteo can be taken longer or did they have another reason for saying do something else? Can you ask them their reasoning?
Maybe you could do a repeat Forteo and then Evenity and they Reclast (or 1-3 shots Prolia and Reclast as some are doing)? We need to get the most bang for our buck over time!
Forteo was prescribed 18 months and going 24 was already the extended dose. She went off the line twice to check with a superior, and each time she came back and would only say "you need to look at alternatives". I appreciated that because obviously it was all she was allowed to say, but certainly gave caution. Evenity builds bone is very similar way as Forteo, so I am hopeful with that choice.
I am 66 and have had 13 fractures in my spine, 2 in my arm. I am appalled that we have to pay so much for medication and do our own research. To be more informed than your own endocrinologist is a scary thing.
I forgot to clarify that the "provider" I spoke to was the Forteo nursing line that was available when I first went on Forteo in 2016