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Struggling with Tymlos medicine
Hello, I’m turning 55 this November , was diagnosed with late stage osteoporosis, started Tymlos 2 weeks ago, with immediate side effects from the very first dose. My dr has had me start with 80, 8 clicks. I’m 105 lb soak and wet. My bones hurt before I began Tymlos, now the pain has become excruciating in my bones, muscle weakness, heat palpitations after each dose, headaches that never go away, and change in my mental health.
I see my Dr for the first time since beginning Tymlos next week. Which I will discuss the issues I’m having.
Has anyone made it through the 2 years? Did the drug improve their bone density? I guess what I’m asking ,
Is this worth what I’m putting myself through mind, body, and soul?
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Honestly speaking, I think it's outrageous that YOU had to come up with the plan to titrate the drug and that the Drs are constrained by the drug companies. The more I read about the entirety of osteoporosis treatment, I'm sickened by how these drugs are being inflicted on trusting patients. More and more my gut tells me to resist.
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3 ReactionsIf you need to stop before the 2 years and without "locking in" the gains with Fosamax, do you need to be concerned with the 'rebound effect' which causes bone loss at a greater rate than before you took the drug??
Considering the potential quality of life altering effects of these drugs it appears there is no/little consideration of the impact on the people captive to the current osteoporosis treatment standard of care. With the state of our healthcare system and the power of drug companies, I feel so vulnerable, especially after reading much of what is presented on this site. Looks like most people are more or less on their own, making their own adjustments to treatment and relegated to long waits to see their practitioners when problems arise. All seems so scary to me.
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1 ReactionI stopped at 6 months, did not make any significant gains, and just went back on Actonel. Things have stayed the same/not gotten worse. As I understand it, the "rebound effect" is something associated with Prolia. I'm supposed to now start Evenity, but I'm terrified and putting it off.
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1 ReactionInl, gains from Tymlos aren't usually reflected in the dxa bmd until after the first year. Having taken Actonel prior to Tymlos would have slowed results a even more. Still, I don't think it is wise to keep taking a medation that causes these side effects, if you have a choice. The six months of Tymlos, in all likelihood, has made you a less susceptible to fracture.
Osteoclasts are fast breaking down bone in 1 to 2 days when filling those pits takes three months and then another three to secure the minerals.
My understanding of rebound is the same as yours. Only Prolia will reduce your bone density to lower than baseline after quitting. I share your fears of Evenity. Our choices aren't any fun.
@windyshores
Hi there. I started tymlos 2 days ago. Was reading about adjustments in this med and the number of clicks to try to lesson horrible side effects. The first dose was full 80mcg.I did not do well. Was very afraid for next day dose. Was in bed all day after first injection. So I went rm to 7 clicks still felt a little dizzy racing heart but after a hour or two I felt much better. Still have a light sick headache. Are daily doses always going to make you feel different? Some days real bad other days mild? I was also told to drink plenty of water before giving injection and stay hydrated all day. I did this the second day and also 7 clicks. I'm thinking did I get all medicine into my body? But my RN scares me by telling me a could be doing more damage if not taking full dose which I don't know if I believe that comment. What do you think? Thanks so much
Marlene
@mar64 I stated with 2 clicks, with the full agreement from my rheumatologist. Gradually worked my way up to full dose over a few weeks. I did not get side effects. . I cannot think of a reason to not try that if the alternative is going off the drug .
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2 Reactions@mar64 I am still only on 4.clicks.I.was on 8.and had to back down. Will be going up again tomorrow to 5 clicks and gradually hope to get back to 8 but at least I'm doing something
@mar64
Marlene, windyshores would tell you that she made gains at the lower dose. She has great doctors and has been generous telling us her experience.
I think the RN is mistaken. The harm comes to us when we continue taking a medication at doses that cause inflammation. Cytokines trigger the cells that break down bone, and repress the cells that build bone.
Windyshores stopped at 7 clicks but took her time advancing to 7. She would always back down on clicks if she had side effects.
A more recent post from darce3
darce3 | @darce3 | May 19, 2025
I just posted info about my positive outcome despite being on a Tymlos half dose (4 clicks) for three months, followed by a three-month pause, and being on 2 clicks for most of the past two months. I went from osteoporosis range to osteopenia range in my spine (3.3 -> 2.4) and hips (3.1 -> 2.5). I remained unchanged, and still in the osteoporosis range, at the femoral neck.
So good results can be had even at a lower-than-therapeutic dose (and for only five months on the medication). I am glad to be sharing this info because I also was concerned that I was expending this money and time for nothing.
Some other info that might be relevant: I am 96 lbs and 5'3". I also have been following the Onero exercise program while on Tymlos. And, I have really increased my consumption of calcium.
I think you are on the right path. But I've never taken Tymlos.
The endocrinologis I see is certain that the headaches with Tymlos happen because of the expansion of blood vessels in your head. If you take tea with your injection and maybe a little salty chip or olive you can reduce the expansion of the blood vessels.https://www.washingtonpost.com/wellness/2025/12/24/tea-coffee-bones-osteoporosis/
Bless your bones.
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1 ReactionI am 72 and developed severe osteoporosis after taking medication for breast cancer in 2000. Since I have been on alendronate for five years, my doctor (rheumatologist) prescribed Tymlos, which I started last July. He prescribed a full dose. I immediately suffered heart palpitations, bone pain, hair loss, and four months later, started limping. At this point, my doctor asked me to stop (limping and heart palpitations immediately stopped). I asked him if about reducing the dosage of Tymlos, but he said that was not possible. I can't take Evenity because of family history of strokes (my Mom died after having a stroke and sister is now debilitated because of a stroke) and heart issues (another sister died from heart failure). My doctor prescribed Prolia, but I declined after reading about the side effects. I asked if I could go back to Fosamax, but he said I have been on it for five years and should take a break. I am on no medication now, but have changed my diet, am walking everyday, and am enrolled in physical therapy for osteoporosis so that I can learn safe weight bearing exercises and strengthening. I will note that after four months on Tymlos, I did see some improvement on my bone density. I am discussing the possibility of HRT with another doctor (my gynecologist), but she wants me to check with an oncologist first because of my breast cancer in 2000.
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