Looking ahead after Tymlos: Reclast, Evenity or HRT?
Sorry this may be a bit long, but here is some backstory:
I am on month 5 of 24 of Tymlos. I'm not loving it much, but tolerating it so far. Side effects of rapid heart rate and sometimes shoulder, chest or back pain for about 30-45 mins following injection. Doc said not to worry, so ignoring it for now. Anyone know of damage to the heart from chemically induced rapid heart rate daily over a 2 yr period? I work out, run, bike, walk, hike, yoga and do weights. As I have for over 40 years. Along with healthy mostly veggie diet, fresh veggies, fresh fruit, high protein from nuts, beans, tofu, etc. My calcium intake easily surpasses the 1200mg daily recommendation so I take no extra calcium other than what is in my daily multivitamin. For about 3 years I've added a D3, K2 as MK-7, magnesium and fish oil. Where the osteoporosis came from is anyone's guess. No family history, and at 66 I am younger than both of my sisters who are 72 and 77 with no osteoporosis. Mom passed at 93 with only 2 years of Reclast before that as she had no osteo either, just osteopenia.....but she was in her 90s before she started. So here I am young, active and healthy (I like to think, anyway) with a spine Dexa of -3.6. Since I already do everything that is recommended and have for years before my diagnosis I decided to go the drug route, which makes me cringe. But seeing as my lifestyle didn't prevent a low dexa score I saw few alternatives.
My main question for those of you out there in the know is where do I go after my 2 years of Tymlos?
~I have recently seen some things about HRT for people over 10 years past menopause. Apparently new research points to this being an OK alternative since past studies were not correct?? So basically a whole generation told that HRT was dangerous and caused increased risk of stroke and heart attack was incorrect (which is why I never started it)? But does that mean that it would be OK to start HRT at 68, the age I will be after Tymlos?
~Evenity....is this similar to HRT?
~Reclast...am I correct in thinking that this is a super-sized yearly dose of a bisphosphonate? What does this do to osteonecrosis of the jaw and spontaneous femur fractures over time? How many years can you take it and if it has a limitation, then what?
Thanks for any and all insights. 🙂
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Hi @seh801 , i read your post and see that you are debating what to do next. There are a few threads on Mayo Connect discussing HRT use:
https://connect.mayoclinic.org/discussion/transdermal-hrt/
https://connect.mayoclinic.org/discussion/hrt-safety/
https://connect.mayoclinic.org/discussion/effects-of-hrt-alone-in-combination-or-sequencing/
I had Forteo treatment then transitioned to HRT afterwards - see the last thread link. The decision to go with HRT wasn't an easy one. It took a good 4-6mo to get fully evaluated including second opinions. So far HRT (6mo) has worked fine for me. We have one member on this forum (@teb) who has been using HRT for 6-7 years post Forteo treatment which maintained her bmd gains from Forteo!
Keep us posted regarding your decision and best wishes to you.
@psmnonna I'm curious if you had reached a conclusion regarding a follow-up med. I found the practice for op treatment varies greatly among practitioners. For example, my endo was not against HRT, however, she sent me for a second opinion (another obgyn) since I was more than 10 years past menopause. So far, it's working fine as an antiresorptive for me.
Hope you have your options sorted out soon and have an easy transition.
@mayblin Thanks so much for reaching out! My original post was last May 2024. I'm now about to start month 15 of Tymlos. I have seen 2 more endos since last May. In Sep the endo I saw just encouraged me to stay the course and was proposing bisphosphonates after I'm done with Tymlos. Hard no to HRT because of all the negative side effects associated with them....despite those being repeatedly refuted by current research. Plus I'm well more than 10 years past menopause. More like 20. No dexa at that visit, but my blood calcium levels were 11.1 and cholesterol had also risen again. Both of those levels were never out of whack until Tymlos.
In Jan 2025 I saw another endo at a the University of Iowa, about an hour from home, who only sees osteoporosis patients. She is supposed to be the "guru" of all things osteo. Same story with her. Stay the course and recommended Prolia after year 2 of Tymlos. I did have a dexa scan this visit and my Lumbar score improved from -3.6 to -3.2 from my first dexa in 2023. No hip score or cervical score because she "doesn't do those as they really don't matter." Also the calcium score was down some to a 10.6. Cholesterol was at a mind blowing 280. Another hard no to HRT or even considering it, same reasoning. This time I pushed back a little and asked about bioidentical HRT and also asked about her thoughts on the current research discounting all the bad press around HRT from a faulty study. She said exactly this, "No, no. It makes no difference what or where the estrogen in the HRT is made. Everyone's body reacts to estrogen the same. It is all processed the same way."
I was crushed....and disappointed that the supposed guru was so very set in her thinking. I'm not going to take Prolia. That is my hard no to the next step after Tymlos. I'm now trying to find a cardiologist to check out why my cholesterol is so elevated, getting a screening for arteries to see if there really is any blockage. If there is any that may prevent anyone from prescribing HRT. Then trying to find a doc who will prescribe is nearly impossible here. I live in a rural area where health care from functional, integrative and naturopaths are hard to find. Also on the search again for yet another endo. I do have a rheumatologist who is a hard no on HRT because her mother took it and ended up with breast cancer. No reason to push her on the subject as she has personal reasons for opposing.
The quest continues. I still have a handful of months left and I may just give myself a drug holiday of my own if I keep running into "hard no" answers! Take care,
Nonna
I found that the approaches to HRT differ quite a bit between your endos and mine. Mine determined HRT is a viable tool in my op management however she left the risk assessments to other physicians (obgyns and cardiologists). Yours determined risks > benefits in your case (without consulting obgyn and cardiologists?). I wonder if their opinions were based on "time hypothesis", which favors starting HRT within 5-6 years after menopause, or at least within 10 yrs post menopause with consideration of cvd risks as a general practice.
Here are a few videos in which menopause specialists (obgyns) talked about when is too late to start HRT:
Seems to me the risk assessments are individual based for those who are post-menopausal more than 10yrs. One physician in the video grouped post menopausal women into 3 groups: within 10yr, 10-20yr and greater than 20 yr post-menopause, she then generalized some risk characteristics for each of these 3 groups.
I'd imagine there is a sizable ob-gyn dept at University of Iowa hospital system, and there may be physicians who specialize in menopause/hormone replacement therapy if luck is on your side. You'd definitely want to hear what obgyn/cardiologist has to say about you risk(s) in using HRT and then circle back to endo(s) to discuss again with the risk assessments from other physicians.
Without an antiresorptive following Tymlos, most people will lose bmd gains gradually within 1-2 years. There was a clinical study done on Forteo cessation which showed most lost bmd gains after 2 years if not follwed up with an antiresorptive. Women lost at a faster rate than men did. If you feel strongly about HRT but don't have enough time to get risk assessments done, you could discuss with your endo the feasibility of taking a 'gentler' bisphosphonate such as risedronate (brand name: actonel or altevia, the latter is delayed release form) or even alendronate for a short period of time then transition to HRT afterwards. If HRT not feasible, then either alendronate or iv reclast is the most probable path. It is very interesting to follow tymlos with prolia. I wonder the rational behind this choice and if this endo had a limited treatment term in mind (to be followed by a bisphosphonate).
@mayblin
Great videos. Thank you! I went to Dr Hirsh's website and watched more videos and they are very informative. Of great interest to me now is her interview with the cardiologist because of my current cholesterol numbers. Great watch and has nearly convinced me to start a statin.
Yes. My endos I've seen have a very different take on HRT than yours do, for sure. I suppose my being 18 yrs post menopause and now high cholesterol that put my risk vs benefit out of their comfort zone. Again the endo I most recently saw insisted that estrogen in any form is processed the same way. Which totally contradicts what all the studies show between using conjugated estrogen or bioidentical estrogen. No other consults or tests were offered, so that's on me, which is ok for now. I'm still looking for someone I can see before my yearly endo visit next January. Wait lists are my current friend.
As for my most recent visit, that Dr has some published papers on Prolia and I think that is her favorite drug of choice as a med to seal in gains from the anabolics. She said she likes to keep Evenity "in her back pocket" as it can be only used once for 1 year so doesn't like to use it early on. I know I'll have to take something after Tymlos.....but the research continues!
Thank you again for the support!
@seh801 Welcome! I'm 69, and was diagnosed with osteoporosis in 2022. I had bone marrow edema and fractures in my foot, ankle, ribs and vertebrae. I was started on Fosamax and then went to a metabolic bone specialist who prescribed Evenity.
Since you've responded well to Tymlos, I agree with your thinking that continuing with that to complete two years is a good idea. You can continue to build bone and then lock in your gains. Hopefully your doctor is amenable to discussing that with you, and it's heartening to read that she discussed options with you!
My trajectory thus far has been Fosamax >Evenity>Tymlos. I responded well to Evenity and had good gains. I did one year of Tymlos which I finished March 2025 and only had improvement in my TBS. I was thinking I'd request another year, but I had some issues in the final months of being on it and wasn't sure if they were due to Tymlos or not. Since I stopped it, my severe joint pain and fatigue have resolved. My doctor wanted to start me on Prolia which I did not want, and thankfully she listened to me and understood and ultimately agreed with my reasoning. The plan now is to do Reclast in May. I'm not a candidate for HRT as I have ALH and LCIS.
Best wishes to you moving forward.
@psmnonna if you can’t find a local doc who is open-minded about HRT, one option is to try Midi. It’s a telehealth service focused on HRT and women’s health. They are covered by many insurance plans. https://www.joinmidi.com
I am 61, about 8 years past menopause and started HRT last year. My doc was willing to prescribe, so I didn’t use Midi. But a good friend whose doc refused to consider HRT just started with Midi and has had a good experience so far. She is 63, 13 years past menopause and just started with HRT.
My understanding is that the advisability of HRT is very individual. If you have higher risk factors for various things (heart issues, breast cancer, etc) it could be riskier. It is so important to find a doc who is open minded about HRT to go through the decision process with you.
By the way, I’m watching this thread with interest because my endo wants me on Tymlos. I have the first dose in my fridge, but got her to agree to let me put it on pause until I can see what my first year in HRT does for me.
Good luck! These are such hard decisions with such limited data.
Thanks so much for the info @hollygs and @mayblin! I've been trying to read more of this forum, but wow there's a lot of information! My GYN has actually recently started specializing in menopausal health, and prescribes both HRT and BHRT. I see a CRNP at the Osteoporosis clinic at UAB who specializes in rheumatology. Between the 2 I feel like I'm in very good hands, but I want to know the right questions to ask, and be informed before I go in. Hoping for increased numbers on my Dexa in a few weeks, and possibly 6 more months on Tymlos, since I've tolerated it well.
@wondering1, great information for others!
In the future when you decide to initiate treatment with Tymlos, could you share if you will be using Tymlos alone, or Tymlos + HRT. Please also share the reason for your choice. Thank you.
@mayblin , will do. As of now, my intention is to stay on HRT for as long as I can regardless of whether I start Tymlos or not.
Your question is interesting because I wasn’t thinking about the two decisions (HRT and Tymlos) as being linked. But maybe it’s worth thinking about (and researching) how they impact each other.