1. < Osteoporosis & Bone Health

How long did your doc have you on Tymlos?

Posted by katwhisperer @katwhisperer, Jul 7, 2023

If you were on Tymlos, how long were you on it? My doc says she keeps most patients at the full two years, even if there's significant density improvement - if any score is still in osteoporosis range.

But I'm wondering if other doctors feel it's more prudent to save 6-12 months usage as a possible "refresher" in the future, if needed, in case density drops again a decade or so down the road - vs using up the whole 2 allowable 2 years now - then having nothing but bisphosphonates in the toolbox - particularly if patients are on the younger side - '50s/early /60s

Thoughts?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

willow54 | @willow54 | Jul 12, 2023
In reply to @windyshores "My 2nd opinion endocrinologist said the same thing as Dr. McCormick. You could do just one..." + (show)
@windyshores

My 2nd opinion endocrinologist said the same thing as Dr. McCormick. You could do just one Reclast infusion and monitor with blood tests. If you need another, so be it. I have been told I will need one or two to "lock in" gains and then can take a med break. Reclast stays in the system a lot longer than Prolia. Of course you need to talk to a doc. Maybe ask your doc to research the effects of Tymlos after Prolia. Do you see an endocrinologist?

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After 2 years my Dr wanted me to continue for 2 more years or start Prolia. My worse score was -2.7 femoral neck and never had a fracture. I took it for 6 more months until I could get a second opinion. Now on Fosamax, which I had been on previously.

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omgirl | @omgirl | Jul 12, 2023
In reply to @windyshores "@omgirl the P1NP and CTX. Blood tests done early, fasting. From McCormick's book: "If you've been..." + (show)
@windyshores

@omgirl the P1NP and CTX. Blood tests done early, fasting.

From McCormick's book: "If you've been treated with denosumab (Prolia), sequencing to teriparatide (Forteo) or abaloparatide (Tymlos) or even romosozumab (Evenity) will increase cortical bone porosity, accelerate bone loss, and heighten risk of fracture. If your doctor suggests this type of sequential therapy, please get a second opinion." My endo says the same thing.

Not sure how this applies to someone who was off Prolia and then on again for a short time, if that is your situation. It seems we all have to take a bisphosphonate, preferably Reclast, at some point to lock in gains, or we lose what we gained.

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Sorry, I noticed an error in my previous reply Re: Prolia. I was off Prolia for 18 months or a bit longer and did NOT go back on — Was supposed to say off Prolia for 18 months before started Tymlos! In between I was taking Evista for about one year but it didn’t help and my DEXA was down approx 10% so we discussed Tymlos since my sister mentioned as she had already taken it. Unfortunately I’m allergic to bisphosphonates so that’s not an option and I was also diagnosed with jawbone necrosis over a year ago which I was treated for. A side effect of both bisphosphonates and Prolia so not sure what I’ll do after Tymlos. Perhaps something new or more valuable research will be available within the next couple of years

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2 replies
windyshores | @windyshores | Jul 12, 2023
In reply to @omgirl "Sorry, I noticed an error in my previous reply Re: Prolia. I was off Prolia for..." + (show)
@omgirl

Sorry, I noticed an error in my previous reply Re: Prolia. I was off Prolia for 18 months or a bit longer and did NOT go back on — Was supposed to say off Prolia for 18 months before started Tymlos! In between I was taking Evista for about one year but it didn’t help and my DEXA was down approx 10% so we discussed Tymlos since my sister mentioned as she had already taken it. Unfortunately I’m allergic to bisphosphonates so that’s not an option and I was also diagnosed with jawbone necrosis over a year ago which I was treated for. A side effect of both bisphosphonates and Prolia so not sure what I’ll do after Tymlos. Perhaps something new or more valuable research will be available within the next couple of years

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@omgirl I have to do Reclast to preserve my gains from Tymlos. I have 7 spinal fractures. BUT my nephrologist is concerned about the effect on my kidneys.

We are all in a bind! My endo is going to try a test dose of 20% the usual dose. We'll see. He is nervous about it but there are no other choices.

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2 replies
omgirl | @omgirl | Jul 13, 2023
In reply to @windyshores "@omgirl I have to do Reclast to preserve my gains from Tymlos. I have 7 spinal..." + (show)
@windyshores

@omgirl I have to do Reclast to preserve my gains from Tymlos. I have 7 spinal fractures. BUT my nephrologist is concerned about the effect on my kidneys.

We are all in a bind! My endo is going to try a test dose of 20% the usual dose. We'll see. He is nervous about it but there are no other choices.

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Omg.. 7 spinal fractures, I’m so so sorry to hear that and were they due to falls or extremely fragile bones caused by ? or no idea? My spine is fused to 2 titanium rods (scoliosis) which I still cannot get used to but felt didn’t have much choice, so I ‘think’ it’s pretty much protected and know that arthritis cannot progress. Fingers crossed that you’ll find the right answer/treatment and stabilize..

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pamie | @pamie | Jul 13, 2023
In reply to @windyshores "@omgirl I have to do Reclast to preserve my gains from Tymlos. I have 7 spinal..." + (show)
@windyshores

@omgirl I have to do Reclast to preserve my gains from Tymlos. I have 7 spinal fractures. BUT my nephrologist is concerned about the effect on my kidneys.

We are all in a bind! My endo is going to try a test dose of 20% the usual dose. We'll see. He is nervous about it but there are no other choices.

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I have multiple lumber and thoracic fractures and severe Dexa score. Dr Mc Cormick suggested Evenity but am concerned about Reclast and if there are lower dosages offered.
How does it affect kidneys?

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1 reply
windyshores | @windyshores | Jul 13, 2023
In reply to @pamie "I have multiple lumber and thoracic fractures and severe Dexa score. Dr Mc Cormick suggested Evenity..." + (show)
@pamie

I have multiple lumber and thoracic fractures and severe Dexa score. Dr Mc Cormick suggested Evenity but am concerned about Reclast and if there are lower dosages offered.
How does it affect kidneys?

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I think McCormick would suggest Tymlos if you don't want to do Evenity. Reclast would not be appropriate for you except as used to "lock in" gains from Tymlos, Forteo or Evenity. He suggested Tymlos for me in the same situation as you. The dose is adjustable so I ramped up to get my body used to it. I had excellent results.

If you do Reclast first, the bone builders won't work as well, I was told. I am doing a test dose AFTER two years on Tymlos to see how my kidneys handle it and then maybe one half dose and after that I will take a break with monitoring.

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canadatx | @canadatx | Jul 14, 2023
In reply to @omgirl "Sorry, I noticed an error in my previous reply Re: Prolia. I was off Prolia for..." + (show)
@omgirl

Sorry, I noticed an error in my previous reply Re: Prolia. I was off Prolia for 18 months or a bit longer and did NOT go back on — Was supposed to say off Prolia for 18 months before started Tymlos! In between I was taking Evista for about one year but it didn’t help and my DEXA was down approx 10% so we discussed Tymlos since my sister mentioned as she had already taken it. Unfortunately I’m allergic to bisphosphonates so that’s not an option and I was also diagnosed with jawbone necrosis over a year ago which I was treated for. A side effect of both bisphosphonates and Prolia so not sure what I’ll do after Tymlos. Perhaps something new or more valuable research will be available within the next couple of years

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Thank you for sharing . I’m so sorry. You mention you are being treated for necrosis of the jaw. Can you please share what this involves?
(When I asked my endocrinologist what she would do if someone started getting necrosis of the jaw she did not have an answer)

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1 reply
omgirl | @omgirl | Jul 15, 2023
In reply to @canadatx "Thank you for sharing . I’m so sorry. You mention you are being treated for necrosis..." + (show)
@canadatx

Thank you for sharing . I’m so sorry. You mention you are being treated for necrosis of the jaw. Can you please share what this involves?
(When I asked my endocrinologist what she would do if someone started getting necrosis of the jaw she did not have an answer)

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Thankfully my dentist noticed bone sticking out towards back on one side during routine dental exam & referred me to an oral surgeon. This was adjacent to the furthest back molar that also had a bone spur and oral surgeon felt that it should come out along with removing the piece of bone. He kept an eye on while surgery was healing and was just an in-office procedure. Also did several CT scans in office to check if saw anything else & didn’t. Had it become worse or re-emerged an MRI would be necessary but it can be tough to find per another MD (rheumatologist)..Unfortunately a very bad side effect of bisphosphonates and prolia - Many say it’s rare but oral surgeon said it’s not that uncommon but then he sees the cases so hard to know the percentage of pos cases. I also took prolia for many years and ever since it was released so like over 10 years which I’d think also makes a difference..

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bayhorse | @bayhorse | Sep 26 1:30pm
In reply to @windyshores "I have been told that the two year limit has been lifted. Online I can only..." + (show)
@windyshores

I have been told that the two year limit has been lifted. Online I can only find the announcement for Forteo, which happened first. The Tymlos insert no longer has the black box warning and time limit. Double check with your doc.

The problem is that these meds stop working sometime between 1 and 2 years, for many. We need to have blood tests (P1NP, also CTX) to see if they are still effective.

I extended my Tymlos past 18 months even though it may not be doing much, because I need time to make decisions in the context of another new diagnosis. Otherwise I would have stopped at 18 months.

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Could you please tell me where you found the info that Tymlos becomes ineffective between 1 & 2 years. I have been looking online and can't find anything to that effect. Thanks...

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1 reply
windyshores | @windyshores | Sep 26 2:42pm
In reply to @bayhorse "Could you please tell me where you found the info that Tymlos becomes ineffective between 1..." + (show)
@bayhorse

Could you please tell me where you found the info that Tymlos becomes ineffective between 1 & 2 years. I have been looking online and can't find anything to that effect. Thanks...

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I got this info from two of my doctors, and from my bone marker tests. Also "Great Bones" by McCormick... and anecdotally (see threads below). Radius, the manufacturer, only provides assistance for 18 months. (My copy of "Great Bones" is in storage at the moment or I would give you a citation!).
https://www.inspire.com/groups/bone-health-and-osteoporosis/discussion/taking-tymlos-longer-than-2-years/
https://connect.mayoclinic.org/discussion/disappointing-results-would-you-continue-or-skip-2nd-year-of-tymlos/

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