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!

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

@idlehands

Numbers can mean so many different things 🙂 Glad you shared the info and glad you clarified it. Thx

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@idlehands honestly I am horrified! I try really hard to be accurate and provide sources!!

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@windyshores

@idlehands honestly I am horrified! I try really hard to be accurate and provide sources!!

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windyshores I'd venture to say that most readers on this forum have learned as much from your posts as from anyone. You're entitled to zone out every now and then. No harm was done. Don't beat yourself up.

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@triciaot

Because you self advocate have you considered hormone replacement with bio-identicals? I realize research says taking estrogen does not effectively build bone, but at your stage you’re wanting to maintain the good bone you have. It is well documented that after menopause a large proportion of women starting losing bone density and hormones play a big part of that.

My suggestion to any 50-65 year old would be to investigate whether hormone replacement is right for them. Today’s research shows it support bone, brain, heart, connective tissue, and the nervous system.

Because of my older sister’s breast cancer, I did not take HRT within the 10 year window they are saying is optimal. My mother and two sisters have never had cancer, yet 2 of them took/take HRT. Only my older sister and I never took it and we both got breast cancer. I’m not suggesting that HRT protected them from cancer, but it certainly didn’t promote any cancer. Our story would skew the statistics on 5 close female relatives and cancer risk.

As AI starts taking over recommendations based on default protocols I think we are going to have to figure out the right question to get AI to consider outside the box. Like asking about research that narrowly missed the significant statistic, and did not become protocol, but may apply to our specific individual circumstances. I’m afraid depending on AI without delving into what data it is using is going to cause denial of service because we don’t all fit into the bell curve.

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I had twins at 41 in 2004 and when I came up for air 8 years later it seemed to be the peak "don't-even-consider-HRT-for-fear-of-breast-cancer" era.

I next thought about pursuing it when I learned that the cancer concerns had been largely debunked, but then Covid was hitting so I back-burner-ed it again. THEN when I finally tried to pursue it last year (before knowing I had OP), I was met with the notion that 61 was too old to start (!).

I am super interested in it and I'm going to broach it with the endocrinologist I'm seeing in a couple of weeks (although I suspect I'll have to keep shopping further for a provider willing to consider it for someone my age).

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@idlehands

windyshores I'd venture to say that most readers on this forum have learned as much from your posts as from anyone. You're entitled to zone out every now and then. No harm was done. Don't beat yourself up.

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@windyshores, I completely agree with @idlehands about learning from your posts.

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@annie208

I had twins at 41 in 2004 and when I came up for air 8 years later it seemed to be the peak "don't-even-consider-HRT-for-fear-of-breast-cancer" era.

I next thought about pursuing it when I learned that the cancer concerns had been largely debunked, but then Covid was hitting so I back-burner-ed it again. THEN when I finally tried to pursue it last year (before knowing I had OP), I was met with the notion that 61 was too old to start (!).

I am super interested in it and I'm going to broach it with the endocrinologist I'm seeing in a couple of weeks (although I suspect I'll have to keep shopping further for a provider willing to consider it for someone my age).

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Hi @annie208 you might have read the thread "HRT safety" on this forum. If not, here is the link:
https://connect.mayoclinic.org/discussion/hrt-safety/
The thinking is changing with HRT use for those of us who are more than 10 years past menopause. Basically the risk vs reward is assessed at individual level. If a sizable medical center or an university hospital setting is nearby, the doctors there are more likely practicing with updated information. I'm a tad younger than you and it took me about 6mo to get fully evaluated - mainly cvd risks and breast cancer risk. I didn't encounter noticable reluctance.

I think your situation especially the fracture calls for a good discussion with your endo to figure out whether or not it's "fragility fracture". This will have an impact on you Frax score hence the "aggressiveness" of treatment for the next ~30 years. Personally I felt long term maintainence after the initial anabolic therapy is a lot more daunting in the absence of sufficient information and tools.

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@mayblin

Hi @annie208 you might have read the thread "HRT safety" on this forum. If not, here is the link:
https://connect.mayoclinic.org/discussion/hrt-safety/
The thinking is changing with HRT use for those of us who are more than 10 years past menopause. Basically the risk vs reward is assessed at individual level. If a sizable medical center or an university hospital setting is nearby, the doctors there are more likely practicing with updated information. I'm a tad younger than you and it took me about 6mo to get fully evaluated - mainly cvd risks and breast cancer risk. I didn't encounter noticable reluctance.

I think your situation especially the fracture calls for a good discussion with your endo to figure out whether or not it's "fragility fracture". This will have an impact on you Frax score hence the "aggressiveness" of treatment for the next ~30 years. Personally I felt long term maintainence after the initial anabolic therapy is a lot more daunting in the absence of sufficient information and tools.

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@mayblin THIS!
"Personally I felt long term maintenance after the initial anabolic therapy is a lot more daunting in the absence of sufficient information and tools."

So well put.

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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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@windyshores

@idlehands honestly I am horrified! I try really hard to be accurate and provide sources!!

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@windyshores , I still THANK you because your reply was still helpful!

With my total hip T score of -2.6, even using 5% (instead of .5) as the margin of error, your statement about my possibly not being fully over the "line" to osteoporosis still applies (95% of 2.6 being 2.47). Be well and many thanks for all the help on here!

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@gently

@annie208 Annie, this is such a great "unorthodox-push" story. We should all be so smoothlyaggressive.
You'll have the best idea (even without the prior-to-use bone markers) because the bone markers will indicate that you are losing more than gaining.
The clinical trials were done with endpoints at 18 months. A two year limit was placed on Tymlos because of caution that it could increase osteosarcoma. That limitation has been removed after years of data disproved the fear.
Some endocrinologist are extending the use of Tymlos to a third year.
The remaining concern is that either Tymlos or Forteo aren't as effective after 18 or 24 months, but there is little data given the prior restriction on it's use to 2 years.
You can temper the heart racing by taking a glass of water and something salty before the injection.
Parathyroid hormone vasodilates the blood vessels usually for the first four hours after use. With more space for the blood to flow through the heart beats faster to keep up with the volume to fluid ratio. Fluids will increase the volume and salt will constrict the vessels slowing the heartbeat.
Flying, yes. Well done.

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Thank you for these kind and validating words.

I always say that on a good day I'm a self-directed, proactive patient who advocates for herself. (But on a bad day I admit I'm probably many providers' nightmare of a google-happy, chronically-researching patient!)

I went through a number of years of being uninsured before the Affordable Care Act and I would get labs from health fairs and just buy appointments from quick-care providers as needed. (So my old "self-management" habits die hard!)

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@windyshores

@mayblin THIS!
"Personally I felt long term maintenance after the initial anabolic therapy is a lot more daunting in the absence of sufficient information and tools."

So well put.

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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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