1. < Osteoporosis & Bone Health

I am afraid of trying Tymlos and other drugs due to side effects

Posted by mkav2023 @mkav2023, May 7, 2023

How do others handle the fear of side effects, as well as the very real side effects, from Tymlos and other osteoporosis drugs?

I am 68, physically active, and feel fine with no fracture history. When I began developing osteopenia years ago, I was put on Fosomax and large amounts of calcium and D for about five years with no positive results, and sure enough, my osteopenia became osteoporosis.

My doctor now is recommending Tymlos due to my worsening Dexascan scores (worse T-score is -3.3 spine, and other T-scores are in -3.0 range). I have read a great deal (pro and con) about Tymlos and its side effects, and I know that even if Tymlos helps, after two years on Tymlos, then I have to go on another drug. I believe the odds are I will encounter a drug sooner or later with serious side effects that will drastically hurt my quality of life.

Any advice from those of you who have been on Tymlos and other drugs with side effects is greatly appreciated. Thank you!

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cgarrison35 | @cgarrison35 | May 8, 2023

I have taken Tymlos for almost a year now. The first two times I used it I had slight, very slight, dizziness. Doc said to inject at bedtime instead and have no side effects at all. I have taken tymlos in the early evening and no longer had any dizziness at all. Go for it as it is the best at rebuilding bone!

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mkav2023 | @mkav2023 | May 8, 2023

I will see my doctor next week and will discuss my concerns with her. Your comments have given me perspective on this, including the fact that fractures can be much worse than some side effects from a drug that may help prevent those fractures. Ramping the dosage up gradually to what is tolerable also makes tremendous sense to me. Thank you, all, again. for sharing your experiences.

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windyshores | @windyshores | May 8, 2023

I am really curious why so many docs are prescribing Evenity after Forteo or Tymlos but mine refuses. I have been reading McCormick's new book " Great Bones" (almost 700 pages!) and he writes that the first 3-4 months of Evenit are especially potent so I asked if I could even do that. Getting a second opinion.

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sarahstuart Sarah Stuart McIlvain | @sarahstuart | May 8, 2023

I have quoted my sister, a recently retired clinical dietician, so I do repeat her message to me: do not swallow anything that is not food. So I told my team that I would only do injection meds. Tymlos won. I do not own any stock in its company. After 5 weeks or so I thought I was having vertigo as a side effect. I was carefully checked and no evidence of meds causing the event. Most importantly, the crystal is home where it belongs.

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sarahstuart Sarah Stuart McIlvain | @sarahstuart | May 8, 2023
In reply to @windyshores "I have had all kinds of vertigo in the last 20 years. What I found out..." + (show)
@windyshores

I have had all kinds of vertigo in the last 20 years. What I found out with osteoporosis is that a minor unwise movement can fracture three vertebrae in 10 seconds. Then a lifetime of pain and disability. I would go through a lot with medication to avoid any more.

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Windy - have you checked to see if your ear crystals are lined up correctly? When I went through my recent episode, the Physical Therapist said to call at any sign of dizziness, I was on her list.

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1 reply
bettersleep68 | @bettersleep68 | May 8, 2023
In reply to @windyshores "I switched to morning because my heart is calmer then. I found staying in bed meant..." + (show)
@windyshores

I switched to morning because my heart is calmer then. I found staying in bed meant worst symptoms: I felt better if I got up and went out.

Today is one of the rare days in the 18+ months I have been on Tymlos, that I tried a full dose. Oh boy! I also ramped up slowly from two out of the 8 clicks on the injection pen and do pretty well at 7 clicks, do fine at 6, so if I have something important to do in the morning I do 6, and if I can rest and walk I do 7. Eight clicks is still impossible for me. I feel awful right now.

Even with partial doses like this, my gains were amazing. It's worth it for me. I have fractures and they are horrendous experiences that have long lasting effects. Tymlos' effects will stop in a year and a half or two years. I am so much stronger.

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What were your gains in your dexa

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1 reply
windyshores | @windyshores | May 8, 2023
In reply to @bettersleep68 "What were your gains in your dexa" + (show)
@bettersleep68

What were your gains in your dexa

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19% spine and 9% hip
-3.7 in spine to -2.6
-3.3 in hip to -2.9

(neck went from-4.1 to -3.6 but noted that it is unreliable)

28 months on 6 or 7 clicks out of 8 possible on the pen

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bettersleep68 | @bettersleep68 | May 8, 2023

Great results ...thanks for posting

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windyshores | @windyshores | May 8, 2023
In reply to @sarahstuart "Windy - have you checked to see if your ear crystals are lined up correctly? When..." + (show)
@sarahstuart

Windy - have you checked to see if your ear crystals are lined up correctly? When I went through my recent episode, the Physical Therapist said to call at any sign of dizziness, I was on her list.

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@sarahstuart I know all about ear crystals and BPPV 🙂 Not a problem right now but when it has been, I just do the exercises myself at home.

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mspatart | @mspatart | May 9, 2023
In reply to @lnl "I have been on Tymlos for just short of one month, so I'm hardly an expert..." + (show)
@lnl

I have been on Tymlos for just short of one month, so I'm hardly an expert but I hope my experiences will help you. I joined this community to hear from others who were further down the road than I was, so that's what I can offer you.
I was terrified to go on Tymlos for all of the reasons. I am 63, small, active, in otherwise great health, and feared ruining all that. My worst number was -3. I also think of myself as someone who gets every side effect there is for everything--which really isn't true-- but close.
I am ramping up the "clicks" very slowly-- heading into week 4, I just administered my first "3" dose. The side effect I get is the increased heart rate. It is scary and uncomfortable, but apparently not dangerous. The Tymlos nurse (and yes, if you start the drug, get assigned a Tymlos nurse-- mine is wonderful--and yes, I am aware of who she works for) recently suggested I lie down and elevate my legs to lessen the effect. It totally worked. This gets into the issue of morning or evening injections (you'll find a lot about that on this site). I started out with evening, but then I found myself dreading the night coming, so I switched to morning-- when I'd be more distracted. But now that I'm lying down after the shot, I'm going back to evenings. I have figured out how to do the injections, so I don't dread them and the evening so much. I could keep talking, but I'll stop for now.
I will be glad to answer any other questions that I can.
Good luck.

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I am not doing well on Forteo so I asked my doctor about Tymlos and he said I could not ramp up the dose because it came in pens with remeasured doses. How did you get the Tymlos that can be increased gradually?

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