1. < Osteoporosis & Bone Health

Struggling with Tymlos medicine

Posted by darla1 @darla1, Sep 1, 2023

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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mariahcb | @mariahcb | Feb 9 10:14am
In reply to @windyshores "@gently and @darla1 I respectfully disagree that Tymlos is not the drug for you, darla1. I..." + (show)
@windyshores

@gently and @darla1 I respectfully disagree that Tymlos is not the drug for you, darla1. I really think you might want to try a lower dose before deciding on that.

I could not tolerate Forteo at all and the dose is not adjustable. I even saw an immunologist to try to get on. This was before Tymlos was available.

So everyone is different. But full dose of Tymlos sent me to the ER before I came up with the plan to start with a low dose and ramp up.

I initiated info on starting low, and doing partial doses if necessary, on this forum. My doctor is head of endo at a top hospital and tells me he has incorporated this strategy into his own practice after my success with Tymlos. So many quit after trying a full dose because it is hard to tolerate.

Start at two clicks and move up. You can probably move up quickly (every few days) until you get to 4 clicks, then slower ramping up helps. Even 4 clicks is therapeutic (my doc says and studies show) and over time you can try to get to 6 or 7. The adjustable pen for Tymlos is key.

Many doctors are constrained by the studies done and the directions for use that resulted from the manufacturer. Your doc may not be able to suggest this. But you can do what you prefer to do and tell your doctor what you are doing.

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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.

REPLY
mariahcb | @mariahcb | Feb 9 10:21am
In reply to @lnl "Hi, Everyone-- I'll weigh in... I, too have struggled with this drug-- for all the reasons..." + (show)
@lnl

Hi, Everyone-- I'll weigh in... I, too have struggled with this drug-- for all the reasons everyone is talking about and throw in hair loss, which is psychologically crushing. I'm approaching month 5 and have have only gotten to 4 clicks in that time. That's all I can take--I'm very small. I have vowed to quit Tymlos every day since April. As Windyshores knows, I'm just hoping that a half-dose will have some beneficial effect. For what it's worth to you: my current plan is to make it to 6 months, have a Dexa scan, and see where I am. If I've achieved no gains/no significant gains in that time (when gains are supposed to be the greatest), I think I will stop. I, too, am miserable on this drug but am trying to do what's best for me long-term.

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If 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??

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1 reply
mariahcb | @mariahcb | Feb 9 10:45am
In reply to @artscaping "Good evening @darla1. I am so sorry to hear about your body's uncomfortable response to Tymlos...." + (show)
@artscaping

Good evening @darla1. I am so sorry to hear about your body's uncomfortable response to Tymlos. Yes, I handled Tymlos injections for two years, and my bone density increased. My experience was just before the clicks were optional, so I started at the top of the climb. Before Tymlos, I was prescribed Boniva, which was just not working for me, complete with pain and discomfort after every dosage. Both my endocrinologist and PCP at the time encouraged me to try Tymlos or Forteo. I actually chose Tymlos because it was less expensive than Forteo. That was four years ago and now I am taking weekly capsules of alendronate, which was recommended by my Mayo Clinic endocrinologist.

I sure wish it was possible to take a class or workshop about our options. I knew absolutely nothing about osteoporosis. I don't think my mother ever took any medications, and I did not have any other friends or colleagues to lend me a hand. At least now we have resources and supportive folks to help us.

May you have happiness and the causes of happiness.
Chris

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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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lnl | @lnl | Feb 9 10:55am
In reply to @mariahcb "If you need to stop before the 2 years and without "locking in" the gains with..." + (show)
@mariahcb

If 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??

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I 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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gently | @gently | Feb 9 1:02pm

Inl, 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.

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