Tymlos side effects
Has anyone else had leg/back aches with Tymlos? I've been on it since October and lately I've had terrible aches in my legs and lower back, especially at night. Is that one of the known side effects? Thanks!
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I don’t know about 18 months of Diminishing returns after using Tymlos….havent heard that ….
I don’t know about 18 months of Diminishing returns after using Tymlos….havent heard that ….
My doctor doesn’t believe in doing bloodwork to determine extent of bone growth ….he said those test r unreliable … i’ll have to make an appointment and ask him …
@ccduplass I am having the same issue with aching legs. I've been on a dose of 60 mcgs for 5 months now, and it hasn't gotten better. I went down to 50 mcgs and it seems better, but I am concerned about getting a therapeutic dose. I had blood work done in May (after 3 mos) and the P1NP and CTX markers shows a strong response, so my doc said I could stay at 60. I have emailed my doc to ask about the 50, but man, it seems better at this dose. Has anyone here had success at 50 mcgs? Anyone know what the absolute lowest theratpeutic dose is?
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2 Reactionslucifrancis,
" Increases in LS BMD with 40 and 80 µg abaloparatide were significantly higher than that with placebo (6.6% and 11.5%, respectively)" https://pubmed.ncbi.nlm.nih.gov/37505256/
It's possible that the 80mcg dose is too high for some of us. You might try supplementing a low dose of magnesium taken at least 2hours apart from your calcium intake. I'm pretty sure you stay hydrated. It's great that you've figured this out.
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2 Reactions@lucifrancis I also have the significsnt lower body bone pain and had to reduce from 80 mcg to 40 mcg. Despite my determined effort to titrate back up by 10 mcg every 10 days to 80 mcg, I was stopped in my tracks by unbearable pain at 60 mcg and was not able to hold there or even at the 50 mcg. I quickly had to return to 40 mcg (now for 3 months) and still occassionally struggle. I have maintained a strong response per P1NP and CTX markers. Also, I had switched to PM injections to help mitigate the headaches and nausea, but I quickly learned the PM injections for me increased the lower body bone pain and interfered with sleep terribly, so I switched back to AM. The daytime movement seems to help. I have my first DEXA, since starting treatment (two failed, due to side effects.....and currently on Tymlos for 4 months) in late August.
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2 Reactions@cathyf31 If your bone markers show improvement, then I think you can be confident that the lower dose is having an effect. Make sure you update us on your DEXA results next month! It will be very useful for people who are using the lower dose and wondering if it's still effective.
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3 Reactions@njx58 Yes, I will. I will have only completed five Tymlos pens by the time of the scan, but I sure need to see some improvement in order to justify enduring all of this, as well as the expense. Due to my situation and my other failed treatments, it leaves mr with only Reclast as the next step....whether that comes sooner or later. That in itself is beyond concerning with my sensitivity to all medications.. thank goodness, my Endo has already mentioned that we would likely have to go with a half dose. And I sure hope by then, the latest research will support that it's only needed once every 5 years, and not annually. There's just so much lacking in this OP area of medicine.
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1 ReactionWow. I’m really sorry to hear of all your troubles that all of you have had with Tymlos. I’m glad I didn’t find this forum before starting or I probably wouldn’t have. I started at full dose about 9 months ago and have had no issues aside from once when I obviously a vessel when injecting and got the dose in my blood stream faster than usual and got a little dizzy. Presumably my BP dropped a bit. I take it just before I go to bed. Started that at the beginning because of the warning of that being a potential side effect. Have all my supplies on my night stand, do my injection and go to sleep. I don’t think I have increased pain from it but I have frequently and variable pain from so many different conditions it would be hard to say it was from one cause. But haven’t had sustained increased symptoms of any kind.
I was osteopenia for a few years and when it turned to osteoporosis my endo said Tymlos for 18 months followed by Evenity or Prolia or whatever the science says best at that time.
Best to all of you.
Kelly
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1 Reaction@cathyf31
We women need to demand more money and research on women's health. It has been a pittance compared to the money and research on men's health. When I am in these forums I really notice more and more the frustration and anger from women. I am one of them!
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1 Reaction@gravity3 With more and more men being diagnosed with osteoporosis, one would think that more attention would be given to this condition, but it's still unacceptably slow and not receiving the attention that is needed. With doctors being all over the place with their understanding, training, and desire to research the field themselves to best treat their patients, it is doubtful we're going to see any drastic changes anytime soon. I am just blown away at how little specialists actually know regarding the latest info in the field and are resistant to the minimal research available.
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