Has anyone been using Tymlos?

Posted by curlylocks @curlylocks, Aug 1, 2019

Has anyone been using Tymlos? I received devastating news that my bone density score is 4.6, much worse than my age of 72. Recommendation is Tymlos.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@susanjohnston

I would so appreciate your response to these questions if your schedule permits:
1. Did you take Tymlos in the morning or at bedtime?
2. Did you experience nausea or vertigo?
3. Did you experience a decrease in blood pressure after injecting that made standing risky?
4. How long did it take you to get to 6 clicks from 2 clicks? And did your doctor object to that?

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1. Early morning
2. No nausea . Very mild vertigo that lasted a few seconds, and happened 5 and 6 hours after injection. It happened only on day 6.
3. No BP problems
4. Up to 7 clicks starting today, which is day 21
5. My doctor was very supportive of trying this approach even though he was not aware of it previously

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Thanks so much! Do you take any food or liquid before injecting? And what made you decide to inject in the morning rather than at bedtime?

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from windyshores
"My doctor was actually happy with 60mcg of Tymlos (but was even happier with 70mcg!).
Switching to mornings eliminated my headaches, Kind of a mystery how each of us reacts, Hope it helps you!"

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@susanjohnston

I would so appreciate your response to these questions if your schedule permits:
1. Did you take Tymlos in the morning or at bedtime?
2. Did you experience nausea or vertigo?
3. Did you experience a decrease in blood pressure after injecting that made standing risky?

Jump to this post

1. Took TYMLOS at bedtime as suggested by doctor.
2. I did experience nausea. It lasted 2-3 months—resulted in a bit of needed weight loss. FNP gave me a low dose of Ondansetron (dissolved on tongue) to use as needed.
3. No dizziness that made standing risky.

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@susanjohnston

I would so appreciate your response to these questions if your schedule permits:
1. Did you take Tymlos in the morning or at bedtime?
2. Did you experience nausea or vertigo?
3. Did you experience a decrease in blood pressure after injecting that made standing risky?

Jump to this post

@susanjohnston, I took Tymlos at bedtime. I could not tolerate a full dose. I worked up from 20mcg to 40mcg and that was all I could tolerate. On a higher dose, I had dizziness, nausea, and orthostatic hypotension. Since I am a fall risk, I didn't think I should take a chance. I took a half dose for 10 months and had significant improvement in my spine according to a REMS test. There was no change in my hips. I am now taking a whole dose of Forteo and plan another REMS test in May to see results.

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Thanks so much for your response. Why did you switch to Forteo? And did you have any side effects from Forteo?

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I have been on Tymlos for 11 months now, and will be on it one more month. I took Forteo (12 months) while I was in my late 40s, so I'll have a cumulative 24 months on these drugs (which is the lifetime limit). I won't be able to go on them again. I used the full dose from the very beginning and the side effects I experienced were fatigue, dizziness, overall body pain, diarrhea, nausea, and heart palpitations. These side effects decreased over time, and as my diary indicates, it lasted about 6 weeks. I suffer from depression and mood swings, too, which is new to me. Now, I have to on Reclast, since I am unable to take an oral bisphosphonate and I refuse to go back on Prolia. Prolia was worse for me than Tymlos. But every person is different.

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@drsuefowler

@susanjohnston, I took Tymlos at bedtime. I could not tolerate a full dose. I worked up from 20mcg to 40mcg and that was all I could tolerate. On a higher dose, I had dizziness, nausea, and orthostatic hypotension. Since I am a fall risk, I didn't think I should take a chance. I took a half dose for 10 months and had significant improvement in my spine according to a REMS test. There was no change in my hips. I am now taking a whole dose of Forteo and plan another REMS test in May to see results.

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What is a REMS test? I have had DEXA Scans but insurance only covers them every 2 years. I was on Boniva for 8 years for Osteopenia and have now been using Tymlos for 5 months as I just crossed over into Osteoporosis in my spine. I am eager to see the results. How quickly do you see results from Tymlos?

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@ajones1967

What is a REMS test? I have had DEXA Scans but insurance only covers them every 2 years. I was on Boniva for 8 years for Osteopenia and have now been using Tymlos for 5 months as I just crossed over into Osteoporosis in my spine. I am eager to see the results. How quickly do you see results from Tymlos?

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Normally your doctor will order a DEXA after a year on treatment. You may be able to get one more than every two years if you are on meds (definitely the case with Medicare.)

REMS Echolight is a new type of bone scan. You can search this forum for REMS and see some discussions.

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@susanjohnston

Thanks so much! Do you take any food or liquid before injecting? And what made you decide to inject in the morning rather than at bedtime?

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I get my coffee, bring it back to bed and have a few sips before the injection.
I decided to try morning because for Forteo it is shown to be more effective with morning dosing time. I thought, well just in case that’s true for Tymlos too, I”ll start there. This is unknown for Tymlos. I learned this tidbit from this forum

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