Has anyone been using Tymlos?

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

@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.

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

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!

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. 🌻💕

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.

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'

@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.

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.

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