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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Psnmonna,
so Tymlos works by temporarily raising parathyroid levels. High PTH causes rapid heartrate. There is a sequence the Tymlos causes vasodilation. Vasodilation lowers blood pressure. Low blood pressure raises heartrate and the heart beats faster to make up for the low pressure. You might hydrate more so the heart doesn't work so hard. Salt constricts the blood vessels so I like to use it as an excuse to eat a couple of blue corn chips, or salted cashews. If the back and shoulder pain recur, you might get a cuff to measure the heart rate because tachycardia can cause afib and afib can cause cardiac remodeling. Your md is almost certainly right to say-- don't worry. The effect may lessen as your body adjust to the medication.
You could take estradiol in addition to Tymlos. I'm partial to the low dose patch for safety, though I don't use it myself.
Your doctors are planning Reclast for two years. The cognoscenti know that one year is good for two years. And the 4mg zolendronates. works just as well as the 5mg Reclast dose. The groundlings are planning month break and then a third year of Tymlos.
And the researchers https://www.cell.com/cell-reports-medicine/fulltext/S2666-3791(24)00266-0?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS2666379124002660%3Fshowall%3Dtrue
Gently - very interesting article on Pepitem. Something I will do more research on. As for Reclast, one year or two? Will one infusion of Reclast stay active for 2 years?
Thanks for your thoughts.
According to the bone expert who ran the clinical trials, one year of Reclast. Reclast is said to stick to the bones for ten plus years. According to a pathologist reclast sticks to the bone for almost ever. He said it attaches in mottled form not evenly like a good stucco job. The effect of an anabolic taken after reclast will be blunted. You might be thinking about say Forteo after the bisphosphonate. So the bone expert is recommending risidronate after Forteo for me. It has the least adhesion time of the bisphosphonates.
I'm glad you have a year to decide.
@psmnonna I usually have episodes of afib that land me in the hospital, once or twice a year. For the two years on Tymlos I didn't have a single episode- despite the rapid heart rate that lasts a short time. I hope that is reassuring.
Time on Reclast varies after Tymlos. Some do one year. I was told 3, because my bones need more density (despite my going from severe to borderline in spine on Tymlos, my hip is still -3.6, up from -4.1). Also, if you do a lower dose of Reclast, you might do it more than once/year.
@gently Thank you for such great information this morning!!
I am also curious and wonder if the reason your dr is recommending Actonel (Risedronate) as a follow up to Forteo is cause you want to have the least amount of years on these meds OR because it provides you the most option to redo an anobolic in the future if need be???
I do plan on repeating Forteo. I'd like to skip the bisphosphonate altogether. And that is the reason for the risidronate suggestion the shortest adherence time, so the briefest interference with repeat Forteo. There aren't trials on longer use of teriparatide because of the original black box. My thought is to take Forteo breaks with no intervening medication. It currently looks as though a month break is too long. I have another year of Forteo.
I haven't found an endocrinologist who actually likes the idea.
I did find a pathologist (cadavers only) who thinks it's brilliant and wants me to send him my bones when it becomes convenient.
For me, Tymlos, which is of course similar to teraparatide, pooped out before 18 months. Bone markers supported this. Even if I took a break, not sure Tymlos would be active in time. I am interested in locking in my gains so far and was told risendronate was a weaker option compared to alendronate or Reclast.
I get that that's the point @gently is making: that a weaker anti-resorptive might make a second course of Forteo more effective. Its relative weakness might also mean loss of bone density in the interim. We don't know the time interval needed for Forteo or Tymlos to then make up for that loss.
Evenity and Tymlos or Forteo have reduced effectiveness after a bisphosphonate, but effectiveness is still there.
I would be afraid to lose more density by waiting for a second Forteo or Tymlos course (which might not be effective, no studies on this) or by using risendronate- thatnI would lose in terms of reduced effectiveness of anabolics after Reclast.
Just thinking out loud here. I would like more research on how a second course of an anabolic might happen.
windyshores, I depend on your more seasoned voice to moderate my posts. Thank you.
@gently I find your ideas on this interesting and wish there was more research! Until there is, I am going to be cautious and do Reclast, hoping a low dose accomplishes both "locking in" and making a second course of anabolic possible.
Of course Tymlos is not approved for more than two years as yet and I could not tolerate Forteo so it may be a moot point 🙂
I hope you will let us know how risendronate works for you in terms of a second course of Forteo being more effective.
I'm glad your afib subsided and hope it has not returned! I think my rheumatology doc is leaning to reclast.
Unfortunately I had no bone markers done before starting Tymlos. Actually never heard of them until reading posts here. Would love to have had that knowledge before so I could've had some sort of baseline before starting any med. Wish bone markers were a required standard like dexa is....but that's another discussion.
Reading your post below I also was unaware that Tymlos or Forteo begins to wane in effectiveness before the full 2 yrs. I'm not excited about reclast as a future option as I'm not sure bisphonates really strengthen bone or just patch in random holes like spackle. Form without substance so to speak.
One would think that a disease that 10 million people have in the US would have more significant/effective treatments by now.
Thank you for your expertise!