1. < Osteoporosis & Bone Health

Began Tymlos 4 wks ago; flying solo till I see Endo in 3wks... advice?

Posted by annie208 @annie208, Dec 3 12:39am

I (62/ F) fell on ice from a bit of height about 9 months ago and broke my femur neck. Because it wasn't from standing, I guess no one raised the OP (or fragility fracture) flag when I was admitted straight from the ER for a Total Hip Replacement (inpatient for 4 nights). I finally got a Dexa about 7 months AFTER my surgery and (sure enough) my one remaining femur neck was T - 2.6. (Spine was -1.8 and Total Hip was -2.1).

When my DEXA results made their way back to my PCP he wasn't very excited or alarmed, but I was. He offered me Fosamax or going the route of diet & exercise. I had read up pretty thoroughly and wanted to get on an anabolic while I still have 2.5 years of excellent commercial insurance years left (and then lock in my gains with Reclast or similar once I'm on Medicare). I told him I was a "brown belt" with filling out Prior Authorization requests (having helped family in the past) and that I met ALL the criteria on my insurance company's anabolic policy sheet. So he wrote me an RX for Tymlos and told me to try for the PA (which to his surprise I got on the first try).

My out of pocket max was met for 2024, so I've secured 3 Tymlos pens for $0 and will only have to pay out of pocket for 1 month in 2025 because my OOP max will get met very early again in '25.

I asked for a referral to an Endo a couple of months back and he quickly and nicely said "oh, nah-- you don't need to do that." I also asked about getting baseline bone turnover marker bloodwork done (P1nP and CTX), but he pooh-poohed that, too (very nice guy, but pretty casual and calm about a few too many things to suit me sometimes :-).) I nodded sweetly and proceeded to wangle bloodwork orders out of my niece who is an MD. In the true spirit of family (and being both a newlywed and new mother) it took her a few weeks to get the order called in, so I had finished nearly a month of Tymlos by the time I had my blood drawn for P1NP & CTX today.

Finally: My questions and request for warnings or feedback about what I'm doing (especially till I see an Endo in a few weeks--one of my PCP's nurses took pity on me and got me the referral I was after in the end):

* Are my Blood Turnover Marker (BTM) results going to be way less meaningful because I injected the Tymlos for a month before getting my not-really-baseline bloodwork? (I expect this journey to be long and involved and wanted to have good records in case I ever seek an appointment with Dr. McCormick or similar.)

* What is the commonly held number of months a person should expect to stay on Tymlos? My prior auth came back good for 24 months and my PCP seems to think I'll be a 24-monther, but much of what I read talks about Tymlos being an 18-month course and "Mad Endo" (physician I follow on TikTok, of all places) always refers to Tymlos as an 18 month drug.

* I injected 3 clicks for the first few days, then 4 clicks a few days and then 7 or 8 clicks for the rest of the month. I'm trying to log my side effects carefully and I think I may be one who settles on 7-clicks for the long run because I do find my heart racing a bit for a couple of hours after I go with 8 clicks (other than that, side effects haven't been much of an issue YET). I am 5'7" and 133 lbs and it's occurred to me that 8 clicks might not be necessary for someone of my BMI, but then I think to myself that I'd better not be 2nd-guessing published clinical trials and all of their results being based on "8 clicks."

* Along a similar vein, I am an IVF veteran and far prefer subcutaneous injections in my thighs. I see that Forteo was tested rotating between thighs and abdomen, but Tymlos is "supposed" to be injected only in the abdomen. I'd appreciate hearing others' thoughts and experiences on thigh injections of Tymlos--I know I sound like a fairly obnoxious/ self-directed medical outlaw type, but I learned early on to question default protocols that didn't make sense to me and to always "advocate" for myself if I was pretty sure I'd benefit from deviating a little!

I am quite active and have been logging a lot of miles in a weighted vest, eating prunes, carefully getting 1000-1100 mg of calcium through food & supplements each day and taking 700 units of D3 w/ K2.

Any advice ( or words of caution, etc.) on what I else I should be doing would be greatly appreciated. I know it was a little unorthodox to "push" my way on to an anabolic when no one was really recommending it, but I really wanted to get fortified as soon as possible and also to use my great insurance while I have it. Thanks in advance!

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loh | @loh | Dec 5 5:04pm

I started Tymlos a month ago as well and I have done both thighs and stomach. I didn’t know stomach was better, my doctor said with was fine and the box shows both?

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1 reply
windyshores | @windyshores | Dec 5 5:10pm
In reply to @loh "I started Tymlos a month ago as well and I have done both thighs and stomach...." + (show)
@loh

I started Tymlos a month ago as well and I have done both thighs and stomach. I didn’t know stomach was better, my doctor said with was fine and the box shows both?

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@loh for insulin stomach is better. That influenced me but it doesn't mean it is true for Tymlos!

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windyshores | @windyshores | Dec 5 5:14pm
In reply to @annie208 "This haunts me, too. When I finally meet with him, I am open-minded to my new..." + (show)
@annie208

This haunts me, too. When I finally meet with him, I am open-minded to my new endo possibly telling me to suspend Tymlos/anabolics and just focus on diet, exercise, and supplements for now. I just hope he's willing to really drill down and try to determine if my fracture was a "fragility" fx or not...

My frax score didn't get the bump it would have if my mother had broken a hip, but she HAS broken 2 bones in her feet in her early 80's just standing and twisting the wrong way and my maternal grandmother broke her hip at 81 from standing. (So I do wonder how accurate my frax score really is.) (Mom has dementia now, but her recent total hip T-score was -3.6. She had two years of Reclast infusions 10-12 years ago and I need to take her in to see about further treatment given her recent Dexa results.)

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@annie208 none of us just stop anabolics, at least in my experience with MD's and other resources. I have been told to "lock in" gains with a bisphosphonate and after a year or more, drug holidays are possible with monitoring . At the point we might be able to rely on holistic approaches for awhile at least.

I was told that regardless of the fact that my first fractures were from a very traumatic fall, my risk of further fractures was high due to those initial ones. Even regardless of DEXA scores and other tests. The spine is less stable after even one fracture. That is what my MD told me.

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mayblin | @mayblin | Dec 5 9:19pm
In reply to @windyshores "That l ink was interesting @mayblin. I had breast cancer driven by estrogen; 80% of breast..." + (show)
@windyshores

That l
ink was interesting @mayblin. I had breast cancer driven by estrogen; 80% of breast cancers are hormonal and 1 in 8 women get breast cancer. Most are older. I was interested in this:

Elevated Breast Cancer Risk Can Be Mitigated
With a therapy combining estrogen and progestogen, both estrogen plus progestin and estrogen plus progesterone were associated with a 10%-19% increased risk of breast cancer, but the authors say that risk can be mitigated using low doses of transdermal or vaginal estrogen plus progestin.

"In general, risk reductions appear to be greater with low rather than medium or high doses, vaginal or transdermal rather than oral preparations, and with E2 (estradiol) rather than conjugated estrogen," the authors writemayblin I was interested in this:

"In the WHI, 70% of the women were over the age of 65 when they initiated therapy, which partially accounts for the negative outcomes. In addition, in WHI, everyone was taking oral [HT].

and this:

Elevated Breast Cancer Risk Can Be Mitigated
With a therapy combining estrogen and progestogen, both estrogen plus progestin and estrogen plus progesterone were associated with a 10%-19% increased risk of breast cancer, but the authors say that risk can be mitigated using low doses of transdermal or vaginal estrogen plus progestin.

"In general, risk reductions appear to be greater with low rather than medium or high doses, vaginal or transdermal rather than oral preparations, and with E2 (estradiol) rather than conjugated estrogen," the authors write.

But I still cannot go near hormones with a previous cancer!! This should be reassuring for others.

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Hi windy, thanks for bring this up. I think we are looking at the same link. I'd like to post the link here just in case anyone is interested in reading it. Many thanks to the original poster @gently :
https://journals.lww.com/menopausejournal/fulltext/2024/05000/use_of_menopausal_hormone_therapy_beyond_age_65.3.aspx
The authors provided extensive information in several tables as well as a statement of conclusiom. I actually brought a printout with me to discuss with my obgyn. Regarding breast cancer incidence tabulation, the % increase risk looked scary. However we need to know they are relative risk increase. The absolute increase in risk is roughly 0.1%. Interesting to note that mortality rate did not increase at all, probably due to early detection and treatablity. With the use of estradiol (bioidentical) with or without progesterone (bioidentical), topical route and appropriate dosing, the real risk increase is yet to be revealed with future well designed clinical studies. As for now, doctors tend to recommend against using hrt for those who have/had breast cancer, or a family history of breast cancer in general.

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annie208 | @annie208 | Dec 7 5:53pm

Well (OP here) my self-requested bone turnover marker results came back and one more snafu reared its head... For whatever reason, CTX labs were not run at all -- only P1NP came back and it was 96 ng/ml (with the reference range listed as 10.4-97.8). I had fasted and gone in early in the morning, but I guess I failed to clarify with the phlebotomist that I was there for CTX, too (darnit).

My appointment with new endo (my first endo ever :-)) was moved up to this coming Wednesday, so I guess I'll just let him order CTX if he is one who uses it.

I don't know what to make of P1NP being 96 after 4 weeks of Tymlos... I wish I had a true pre-medication baseline, but hopefully this will still be useful to him.

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