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. 🙂
Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
I will take 6 Evenity injections and then Reclast annually for 3 years.
I have a bone DEXA scheduled in December but the cost is $800
Has anyone been successful in getting Medicare to cover before the two year wait between scans?
psmnonna, that’s a big step forward - it takes courage to sort through different opinions and make the choice that feels right. The better sleep you’re noticing is likely thanks to the micronized progesterone, and you may also find some urogenital benefits along the way, though breast tenderness can show up too (it goes away after a few months).
For cardiovascular health, I’ve found cardiologists the best at weighing risks. In my case, even with mild cad (cac 38), two cardiologists didn’t hesitate to give me the green light since my ldl-c is well under 50 (on a statin) and I don’t have a family history. In your shoes, I’d keep a close eye on ldl-c and if possible, consider Lp(a) and ApoB testing for a fuller picture.
For bone benefits, tracking bone turnover markers can be reassuring. My CTX has stayed 110–130 after six months on HRT, showing a good antiresorptive effect of estrogen (same low dose as yours), even though my blood estradiol level barely moved (from 18 to 21).
And of course, im sure you’ll continue with annual mammograms as a precaution.
Now the only thing left is mending PR with your endos 😉 I’m cheering you on in this new chapter and here to share experiences.
@clowny
Medicare should cover the cost of your dexa scans more ofter than the "every 2 yrs" that is normally allowed. Since you are taking now, or going to take, Evenity the Dr can order scans more often to monitor you and the effects of the meds. I've had blood tests and other scans before the required time and Medicare has covered the extra tests for just that reason.
@mayblin
Thank you for the cheers! I am definitely going to watch all things cholesterol closely. My most recent and surprising bloodwork showed ldl was in the slightly elevated levels, but hdl was high so offset the total leaving me in the clear....for now. I will ask about Lp-a and ApoB before my next blood tests.
Unfortunately, I have no beginning point of reference for CTX or P1NP scores. I had never heard of those tests before joining here. Which was after I had already started Tymlos. None of the endos or the rheumatologist I see do those tests. At my last dexa at the University of Iowa, I asked the tech if they had a REMS capable machine and she asked what REMS was. So never had that to see what my bone strength is either.
Like I read here once on a post....it's like steering a boat in the dark without a compass.
Just doing whatever I can to stay afloat!
Thanks. I thought it should be covered.
If you are taking medication for osteoporosis, Medicare will cover a DEXA even more frequently than usual. I had two DEXAs not quite a year apart, and it was no problem. Being on meds is the key.
@psmnonna, I am in a similar situation to you. My 3 endos and 2 PCPs told me not to take HRT. I am 74 years old, 20 years past menopause. I took 40 mcg of Tymlos for 9 months, then Forteo for 6 months. I am now back on a half dose of Tymlos. I am very sensitive to medication. I found a functional physician who was willing to prescribe bioidentical HRT. I do not want to take Prolia or Reclast. My endos will not be happy with me when I see them in October.
I have been on Menostar, 14 mcg bioidentical estrogen for almost a month. It took me 16 days to adjust to the dizziness it caused. Then I decided to try the progesterone. She gave me 50mg of progesterone in a capsule. Since it didn't help me sleep, she gave me a compounded cream. I am trying to get used to that. I think some of my problems with progesterone are because I am still taking Tymlos. From what I've read, they appear to do the same thing. I don't have a uterus, but I did have surgery for endometriosis in the past. My functional doctor thinks that I need to balance the estrogen. Apparently, progesterone can increase osteoblasts, while estrogen decreases osteoclasts.
I hope that you get very good results with your HRT. Thanks for posting and please keep us updated.
@drsuefowler, your comment about the impact of estrogen and progesterone on osteo oclasts and osteoblasts is interesting. I hadn't heard that progesterone increases osteoblasts and estrogen decreases osteoclasts but it makes sense. My naturopath physician certified by N.A. Menopause Society, said that the BHRT may give me a small amount of gain and if it did, I would need to remain on the BHRT to maintain any small gains. My REMS Echolight scan showed an increase from spine t-score -3 to -2.6 over a 10-month period. I had also been taking supplements recommended by Keith McCormick. My CTX bone turnover was reduced by 80% from 688 to 138 over an 8 month period. I began taking BHRT at 67 lin July 2024 and have so far not fractured nor taken any OP medication, I wish to avoid, though I would not refuse it if things took a severe turn for the worse. I will have another CTX next week.
@debbie1956, Those are great gains on BHRT! It would be interesting to find out what your P1NP level is. Maybe ask your naturopath to add it to your blood work? What were your REMS hip results? I had good results from Forteo and Tymlos on DEXA and TBS, but REMS showed no change.
I am seeing a functional physician while I am in Michigan, but I return to Florida next week. I have a list of N.A. Menopause Society doctors there and will check them out. It sounds like your naturopath knows what she's doing.
Thanks for posting. I am encouraged by your results.
@drsuefowler Yes our situations are similar! It seems that once your are past the golden 10 year mark of menopause that scares most of the Drs into saying no to HRT. We both will have some explaining to do to the endos!! I'm 67 and 18 yrs post menopause. I have taken the full dose of Tymlos since starting, and still have the heart racing issue after injecting. Finally figured out to get up about an hour early, inject, then go back to sleep and that seems to work. When I wake up for the day I feel like normal instead of being sluggish for an hour to hour and a half after injecting. I sleep through that stuff.
So far no ill effects from either the bioidentical estrogen or progesterone. I have a patch for the estrogen, 0.05mg, and change it once a week. So far it's been 1 week! I still have a uterus, and still taking Tymlos for another 4ish months. If they do work together, then all the better! I had either heard on a podcast or read somewhere the same thing about effects of these hormones on the osteoclasts and osteoblasts. I kept that in the back of my mind when the gyn Dr said at this point the HRT wouldn't have any effect on my bones. I'm hoping there is a little boosting power given to Tymlos. Is your estrogen a tablet or pill? If so, maybe going to a patch would help with dizziness? Bypass the digestive system?
My progesterone is 100mg capsule. So far no effects from that either that I can tell anyway. Possibly sleeping a little sounder, but still waking a couple of times a night. Fewer night sweats, but still get them. And it only has been a week, so I'm calling it a win, kind of, so far. What is the progesterone cream you were prescribed? I'd rather have that, I think, than take the capsule. I'd prefer to avoid anything that is processed through the liver, but the cream wasn't offered, so I now have a 90 day supply of the capsule. Is it comparable to your 50mg progesterone dose, or stronger since it wasn't helping sleep?
Here's to us both getting good results and trying not to miff too many endos in the process!😂