1. < Osteoporosis & Bone Health

Has anyone been using Tymlos?

Posted by curlylocks @curlylocks, Aug 1, 2019

Has anyone been using Tymlos? I received devastating news that my bone density score is 4.6, much worse than my age of 72. Recommendation is Tymlos.

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

windyshores | @windyshores | Apr 21, 2023
In reply to @mmodestti "Great news! While it is still osteoporosis, it is definitely an improvement. I'm really glad." + (show)
@mmodestti

Great news! While it is still osteoporosis, it is definitely an improvement. I'm really glad.

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@mmosesti I did not expect to get to -2.5- the borderline- in a million years.

With 7 fractures already I am at huge risk for more, but I am so much stronger than I was before Tymlos.

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1 reply
mmodestti | @mmodestti | Apr 21, 2023
In reply to @windyshores "@mmosesti I did not expect to get to -2.5- the borderline- in a million years. With..." + (show)
@windyshores

@mmosesti I did not expect to get to -2.5- the borderline- in a million years.

With 7 fractures already I am at huge risk for more, but I am so much stronger than I was before Tymlos.

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True! I have had a few fractures myself. Not fun!
My endocrinologist prescribed Tymlos, but I am still in the process of health insurance approval.
I was a little hesitant, but your post has given me hope. Thank you for sharing this. 🌻💕

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1 reply
sarahstuart Sarah Stuart McIlvain | @sarahstuart | Apr 21, 2023
In reply to @artscaping "Good evening @gingerp, welcome to Connect. I see this is your first post and it is..." + (show)
@artscaping

Good evening @gingerp, welcome to Connect. I see this is your first post and it is a timely issue. The first thing I noticed is that you are getting ready for spine surgery. Although I was on Tymlos for two years, I did not have any dental issues. As a matter of fact, I did not have any side effects during the two years on Tymlos. I also had a dental surgeon examine my X-rays before moving on to the bone protector medication after Tymlos. He found nothing of any concern as a result of the Tymlos treatment.

However, I do want you to meet @jenniferhunter. She is a spine surgery patient as well as a Connect Mentor and has been helpful to so many Connect members. Also, my local dentist is very interested in receiving information about members who have dental concerns.

I debated about including this next comment and I won the debate with myself. So, my Mayo endocrinologist has shared with me the current issues about major dental procedures and medical surgery. He feels that the length of these extended periods without mediation in order to facilitate dental implants is controversial. The surgery issues can be uniquely individual based on the medical and dental realities.

May you be safe, free, and protected from inner and outer harm.
Chris

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As a daughter of a mother who lost all of her teeth while she was on Prolia, I'm sympathetic. (And main reason I'm on Tymlos). As a dutiful daughter, once a month I sent my mother a box of chocolates - no caramel, no nuts. The night nurse carefully put one piece on her pallet so she could fall asleep with a pleasant taste that brought happy memories. She died at 102 years old.

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sarahstuart Sarah Stuart McIlvain | @sarahstuart | Apr 21, 2023
In reply to @gingerp "Hello Bone regiment community! I'm looking for some feedback concerning any personal experiences with Tymlos in..." + (show)
@gingerp

Hello Bone regiment community!
I'm looking for some feedback concerning any personal experiences with Tymlos in relation to dental procedures please.
I'm 58 and in my preparation stages for upcoming spine surgery and want to address my dental implant needs prior. My endocrinologist has prescribed me Tymlos for three months before surgery and 2 yrs post surgery. As I understand it,Forteo doesn't have strong support compatibility with major dental procedures according to my dentist prior to surgery or an extended period of 3 months or more following the dental implants at the earliest before spine surgery. Thank you for any and all support feedback!

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Ginger

I've only been on Tymlos for less than 2 weeks. My decision was based more on family than science. My father had every type of arthritis know and my mother was on Prolia with no teeth.
My sister the clinical dietician told me she would not make a decision for me, but I had to take an injection and not swallow any pills. I told the doctor that I would take any injection medication she thought was the best for me. Ergo, Tymlos!

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windyshores | @windyshores | Apr 21, 2023
In reply to @mmodestti "True! I have had a few fractures myself. Not fun! My endocrinologist prescribed Tymlos, but I..." + (show)
@mmodestti

True! I have had a few fractures myself. Not fun!
My endocrinologist prescribed Tymlos, but I am still in the process of health insurance approval.
I was a little hesitant, but your post has given me hope. Thank you for sharing this. 🌻💕

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@mmodesstti fyi Tymlos/Radius has a patient assistance program if you meet income guidelines. You call Together with Tymlos and they coordinate for you. This doesn't benefit everyone but if you qualify you get 18 months for free and insurance isn't even involved.

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gulfcoastwoman | @gulfcoastwoman | Apr 22, 2023
In reply to @windyshores "Just wanted to let you all know that I got my 18 month DEXA results today..." + (show)
@windyshores

Just wanted to let you all know that I got my 18 month DEXA results today and my spine went from -3.7 to -2.5! That is borderline osteoporosis. As you know, I started at two clicks and moved up. Most of the 18 months was at 6 or 7 clicks (more at 6 than 7), and I did only a few weeks of full dose 8 clicks in February. So the partial dose works. I still have severe side effects at 8 clicks but not 7, which is interesting.

I see my endocrinologist next week and will discuss 1) continuing Tymlos longer since with partial dose, I have some left 2) Evenity and 3) Reclast but he wants to do a test dose first to see if I tolerate it.

Here is my full DEXA report from this morning. Note the scores as well as the substantial % of change:

INDICATIONS FOR TEST: Osteoporosis, Tymlos, H/O fracture

Findings: L 1 excluded from analysis

Region T-Score
AP Spine -2.5 (2021 was -3.7)
Femoral Neck -3.6 (2021 was -4.1)
Total Hip -2.9 (2021 was -3.3)

Additional data on Z-Score and BMD in g/cm2 is available by clicking the image.

World Health Organization criteria for BMD interpretation classify patients as:
Normal (T-score at or above -1.0)
Osteopenic (T-score between -1.0 and -2.4)
Osteoporotic (T-score at or below -2.5)

At this facility, the least significant change in BMD with 95% confidence is 0.025 g/cm2 at the L1-4 spine, 0.026 g/cm2 at the total hip, and 0.029 g/cm2 at the femoral neck.

Today's examination is compared to the technically similar prior study of 6/12/2021. The % change in BMD since the last examination is as follows:
AP spine 19.1
Total hip 9.4

IMPRESSION:
Based on BMD, diagnosis is osteoporosis. Marked gain in BMD as noted above.

ps I took 800mg calcium/day (I don't eat dairy) and gummies of D3 (2000/day) plus a gummie of D3 and K2 so total D3 was 3,000 units/day, 45 mcg K2. I have labs tomorrow so we will see if Tymlos truly "eats D3" as I once read. That amount of D3 would normally cause a pretty high level of D3 in the blood.

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Congratulations! That's great news! Thanks for sharing.

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adcummings | @adcummings | Jun 23, 2023
In reply to @elizabethaames "I'm confused on all the references to 'one click, two click' stuff as I was put..." + (show)
@elizabethaames

I'm confused on all the references to 'one click, two click' stuff as I was put on Tymlos back in Oct. and told 'dial it to 80' period. I've also had some red spot pin prick soreness and def feel the needle going in too...as I think I do it too slow.
Also have had vertigo sporadically and initially had hair loss (about a brush a week) but that's tapered off...

Biggest prob right now is I've ended up w/some neuropathy as in 'tingling toes' and numbness which to me seems like a 'fall risk' as I'm an athlete, 63 as well and don't want to make my circumstances worse! I asked to be switched to Forteo right away as it was a 'gold standard' etc. but insurance wouldn't let me due to 'expense' so I'm stuck on Tymlos...and have adapted. It's a shame when insurance companies control healthcare...doc said I'd have to prove worse 'adverse reactions' for them to switch me over as they need 'substantiation'

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You can turn the dial one click at a time. My doctor told me to start with half dose, which is 4 clicks (the point between the two arrows). I started mine two days ago. I definitely feel the needle and do not like it. I’ll continue to do it because I have osteoporosis in my right hip and osteopenia in my left hip and spine. I avoided it for a few years, but I saw a classmate with severe osteoporosis a while back and decided it was time. Hope you are doing well with yours.

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2 replies
cloud60 | @cloud60 | Jun 28, 2023
In reply to @artscaping "@georgette12, @cireland, @curlylocks, Thank you so much for responding. Those are the exact reasons I chose..." + (show)
@artscaping

@georgette12, @cireland, @curlylocks, Thank you so much for responding. Those are the exact reasons I chose Tymlos @cireland, The other reason is that it doesn't have to be refrigerated. I think @georgette12, you fell into the donut hole. The price is high for a month or so and then it drops to $8.00 give or take a few cents, for the rest of the calendar year. So..overall, it is a good idea. This is a new medication, and you are right it should be state of the art. I would like to stay in touch on Connect with folks who share a common medication for what we all want to avoid, fractures. Please don't fall now until it builds more bone. I am even thinking of getting a snazzy cane until I finish the 18 months.

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Don’t fall ever actually bc bones are more brittle with Tymlos and so they are harder to heal after a fracture.

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2 replies
cloud60 | @cloud60 | Jun 28, 2023
In reply to @curlylocks "After finding out about my results from my primary doctor, I went to Wake Forest Baptist..." + (show)
@curlylocks

After finding out about my results from my primary doctor, I went to Wake Forest Baptist Medical's Fracture Liason Dept. for a second opinion. They concurred with my primary doctor. Since it was more cost effective than Forteo and they determined the side effects less harsh for my health concerns, both doctor's recommended the same drug.. Unfortunately, I need a knee replacement and cannot go forward with this surgery until I rebuild bone. My Part D insurance doesn't provide good coverage, I am hoping the pharmaceutical company will help with the cost. I almost passed up traditional care an alternative treatment, but decided otherwise.

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Are you in North Carolina ? I am in Raleigh

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windyshores | @windyshores | Jun 28, 2023
In reply to @cloud60 "Don’t fall ever actually bc bones are more brittle with Tymlos and so they are harder..." + (show)
@cloud60

Don’t fall ever actually bc bones are more brittle with Tymlos and so they are harder to heal after a fracture.

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@cloud60 bones are not more brittle from Tymlos. Bones become more brittle over time with anti-resorptives like bisphosphonates (Reclast, Fosamax etc.) and Prolia, and to a lesser extent Evenity (in the last months). Tymlos and Forteo build quality bone, my doc has said.

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