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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Peter Attia who wrote Outlive said the biggest mistake medicine ever made was telling our generation not to do HRT. But people say to me "but you couldn't take it, your sister had had breast cancer." I say 'so what, I got breast cancer anyway, with HRT I might not have gotten osteoporosis." I am also ten years past meno and more and more tempted by it. I think the bones it builds aren't fake strong from having osteoclasts shut down and leave the rotten old bones instead of taking it away. And Evenity is totally different from HRT, it's a drug whereas HRT is just giving you a hormone you used to have anyway (I am also thinking about bioidentical hormones).
I’ve noticed using vaginal hormone cream and Tymlos at bedtime, I don’t sleep will that night. I might try the cream at night and injection in the am and go back to sleep.
Also I just started Algae Cal collagen drink with “Fortibone” hoping it helps. Tastes like a dog bone, will put it in juice..stay tuned
Love your last paragraph. One would think that however most of
us are women and the money allocated for women's health research is a pittance.
@sl303 Agree with you completely!! All of these osteo drugs have side effects, some quite serious, and no one can tell how their bodies react until it's too late. The risk of cancer, heart disease, stroke, blood clots, dementia and other biologic events increases anyway with age alone. To me HRT, replenishing a natural hormone your body has lost, makes much more sense, especially given that HRT actually protects against all of those things! If only we knew then what we know now.....and also 90% of doctors who are still afraid for whatever reason to prescribe HRT would update their education on all of the studies which show the benefits of HRT, it wouldn't be such a struggle. The struggle is real.
@eileenvan I take Tymlos in the early morning hours. It is supposed to work better if taken in the morning. I inject between 5 & 6am then go back to bed. I usually drift off for a while and then when I do get up for the day I feel fine. I don't know why, but that works for me. Hope it works for you, too!
Osteo Meds are 2 distinctly different classes; this is important. Here ( below is a paragraph from that article) in a nutshell is a great deifinition from : Skeletal responses to romosozumab after 12 months of denosumab - PMC
Please pay particular attention to the last sentance about sequencing. Bone forming drugs are not as effective ( but still work to some degree) if taken after bisphosphantes.
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".....Antiresorptive drugs and bone‐forming agents are distinct classes of therapies for treating patients with osteoporosis.( 1 ) Estrogen receptor activators, bisphosphonates, and denosumab are anti‐remodeling drugs that reduce bone resorption and formation, increase bone mineral density (BMD), improve bone strength and reduce fracture risk, but they do not restore the disordered trabecular microarchitecture found in patients with postmenopausal osteoporosis.( 2 ) In contrast, bone‐forming agents stimulate bone formation, resulting in large increases in BMD and improved bone structure, and have been shown to be more effective at reducing fracture risk than oral bisphosphonates.( 3 , 4 , 5 , 6 , 7 ) Based on these data, bone forming agents are recommended as appropriate initial treatment for patients at very high risk of fracture.(..."
This should help you identify what is best for you based on your fragility state.
Now that said, bone forming drugs have unique charatieristics. Forteo and Tymlos build mostly trabecular bone and can in some cases ( my case) decrease cortical bone. Spine is mostly trabecular bone so if you are more concernered with spine issues, then either of those could be considered. I persoanlly had mutilple fractures in my feet which is mostly cortical bone. Therefore for my situation, Evenity is being used after tymlos to rebuild cortical bone. Hope this helps. Meanwhile I advise you read Great Bones by McCormick for further infomration to help identify cause for the osteo and help support your recovery. ( In my case I had super high urine cal lost, high homocysteine, high vitamin D,- also i had to stop drinking softened water which was processed with salt which compounded bone loss- all of these had to be brought into balance to effectively allow the drugs to work. I had corrected my diet and sleep schedule also. Low sugar no caffeine, low acid foods no alcohol lots of veggies ) Sending postive energy for your research, decsiison and recovery. You can do it!! God bless.
I'm actually not clumsy; this is the backstory. But over the past 15 years, I've fallen more than a few times. (Trying to prevent a dog fight when my dog was leashed but the other not, walking in the park with over grown grass and falling in a gopher hole, son-in-law filled the ice chest with ice to get on the boat and I didn't see the ice that he left on the floor) But after each fall, my primary care doctor would say, "Even with your osteoporosis your bones are stronger than we thought." My gynecologist, many years ago, said that there are studies to suggest that estrogen actually improves the "integrity" of the bones. I took that to mean the quality. After being on Forteo for 2 years, (years ago) my doctor wanted to transition me to Prolia to "keep what you've gained." (This was all back when I was in my early 60s and Prolia had just hit the market.) I said, "no thanks," and went on ERT (estrogen only, was happy I had a hysterectomy and could skip the progesterone) For the next 8 years, at every 2 year DEXA scan, my bones did not lose mass. Then, after 8 years I got breast cancer, Stage 1, non-invasive, and the oncologist made me quit the estrogen. My last 3 DEXA scans show a decline. So the reason for this post is to suggest that I believe that estrogen is fabulous for your bones, if you feel comfortable taking it. I'm do not regret having the estrogen patch all those years. I agree with sl303, I may have gotten breast cancer anyway. My quality of life was worth something and my bones benefitted from it. After b/c I was talked into starting Prolia. I was on it for 5 years and did fine. THEN my health organization switched to Jubbonti, with the same active ingredient, only on the market for 3 months, and my life has been a nightmare of side effects since my injection in August. I'm only mentioning this because if your healthcare provider pontificates how Prolia & Jubbonti are biosimilar don't necessarily believe your body won't react differently.
dmshope: Great post. Thank you for sharing your information. I did not know about trabecular versus cortical bone. But, that would explain why when I told my endocrinologist I wanted to get off of denosumab and go on Forteo, for the 2nd time, (it has been 15 years since I last took it) she said Forteo only worked for the spine and my Dexa showed my spine had improved to osteopenia, but my hips were full on osteoporosis and Forteo didn't work for hips.
My current dilemma is I have been on Prolia for 5 years and did fine. Then the endocrinologist, under the mandate from the health care organization she works for, switched me to a biosimilar drug for Prolia (Jubbonti-only on the market for 3 months) I'm sure their was a monetary incentive for them in some way, and I have been miserable with side effects since my injection 5 weeks ago. That was why I had a conversation with endo. asking to go back on Forteo. I have told her that if she can get an exception from Sutter Health, the organization she works for, to let me go back on Prolia rather than Jubbonti, I will try it once again. Now, if I have another bad reaction after a Prolia shot in 6 months I will then assume my body, after 5 years, has just decided that it doesn't appreciate denosumab, in either formulation whether it be Prolia or Jubbonti. Then I'm going to be throwing my hands up in the air trying to figure out what to do.
Yes, my gynecologist is one that suggests that HRT could be beneficial with osteoporosis and even with high cholesterol. I'm still fearful for going that route and I've had so many problems with a number of the osteoporosis drugs, the most recent being the reclast which was like poison to my body. Anyways if anybody has any positive experiences about HRT and wants to share them please do so. Thank you Jayne
I was telling someone else about this and decided I should make a separate page for it but also sending to all the recent replies. The struggle is horrible and the doctors feel like they've solved the problem.
I want this thing LOEP Local Osteo Enhancement Procedure https://pmc.ncbi.nlm.nih.gov/articles/PMC12035697/