1. < Osteoporosis & Bone Health

How long did your doc have you on Tymlos?

Posted by katwhisperer @katwhisperer, Jul 7, 2023

If you were on Tymlos, how long were you on it? My doc says she keeps most patients at the full two years, even if there's significant density improvement - if any score is still in osteoporosis range.

But I'm wondering if other doctors feel it's more prudent to save 6-12 months usage as a possible "refresher" in the future, if needed, in case density drops again a decade or so down the road - vs using up the whole 2 allowable 2 years now - then having nothing but bisphosphonates in the toolbox - particularly if patients are on the younger side - '50s/early /60s

Thoughts?

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mayblin | @mayblin | Oct 3 10:10am
In reply to @susyt "I am trying to learn about these bone turnover markers in blood tests. I see a..." + (show)
@susyt

I am trying to learn about these bone turnover markers in blood tests. I see a "C-Telopeptide, Serum" (up to 778 from 590 three months ago), "N-Telopeptide, Urine" (which gives me a NTx of 58, too high), a "Propeptide Type I Collagen" (up to 220 from 191 three months ago). My doctor did these tests, but all he told me was that my Vitamin D is too low, even though the report says the PT1C is too high. Can someone explain these to me? I am postmenopausal, going on 15 years now.
I was completely exhausted and weak on TYMLOS after 6 months. I cut back 5 days ago, as someone here suggested, rather than go cold turkey, as my doctor suggested. I feel so much better! So, what happens on the 50 dose rather than 80 rather? Do you stay on it longer, or do you have to work back to 80?
Thanks!

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@susyt did you have your bone turnover markers (CTX and P1NP) tested before you started Tymlos as a baseline? If so, do you mind sharing the numbers?

As you probably know, CTX is a marker for bone resorption (breakdown), and p1np for bone building. They are useful in monitoring treatment progress for an anabolic such as Tymlos, with certain limitations. If your baseline P1Np is within reference range for postmenopausal women, then your two readings of 191 and 220 were very impressive - an indication that Tymlos is working great! If you feel great at 50mcg Tymlos currently, you could gradually increase the dose to reach a maximum dose thats tolerable to you. I suspect the bone density increase with Tymlos is dose dependent and 80mcg is the dose thats marketed to achieve the desired end results. Moreover, the longer you stay on Tymlos (to a max of 18-24 mo), the more bone you will build. This is backed by clinical studies.

Wish you the best!

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Karen Anderson | @fresian1 | Oct 3 5:00pm
In reply to @windyshores "@susyt you can make progress on 50mcg but 60 is better if you can manage. Give..." + (show)
@windyshores

@susyt you can make progress on 50mcg but 60 is better if you can manage. Give yourself time to figure out what you can . If 50 is the limit my doc was happy with that.

Tymlos needs a lot of D3. Can you do a megadose of 10,000 units to get it up? As I wrote before my D3 stayed around 50 with 3,000 units a day but I started at 50.

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I just started on Tymlos. I am having trouble trying to give myself a lower dose. Today, when I pushed the button to inject the medication, the dial immediately went back to zero. I assumed I didn’t get any medication so I tried twice more. Each time, the dial reverted to zero as I was pushing on the button. To top things off, a needle broke, leaving a tiny length inside. I injected myself a total of three times but don’t know if I got a little medication or not. Has anyone else had a similar issue?

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1 reply
bluebonnet242 | @bluebonnet242 | Oct 3 6:48pm
In reply to @fresian1 "I just started on Tymlos. I am having trouble trying to give myself a lower dose...." + (show)
@fresian1

I just started on Tymlos. I am having trouble trying to give myself a lower dose. Today, when I pushed the button to inject the medication, the dial immediately went back to zero. I assumed I didn’t get any medication so I tried twice more. Each time, the dial reverted to zero as I was pushing on the button. To top things off, a needle broke, leaving a tiny length inside. I injected myself a total of three times but don’t know if I got a little medication or not. Has anyone else had a similar issue?

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I’m hoping @windyshores will chime in but after you inject the dial automatically resets to zero. Were you going by clicks or did you turn the dial all the way?

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Karen Anderson | @fresian1 | Oct 3 8:25pm

I went by clicks. I was trying to do two clicks.

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1 reply
windyshores | @windyshores | Oct 3 10:49pm
In reply to @fresian1 "I went by clicks. I was trying to do two clicks." + (show)
@fresian1

I went by clicks. I was trying to do two clicks.

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@freuab1 you turn the pen and feel the clicks. Then inject. The pen then goes back to zero as @bluebonnet232 said. We could help more if we understood whether you are able to feel the clicks.

Having a piece of the needle stuck inside your skin sounds like a need for a quick MD visit. How did that happen? Did you do three injections with the same needle? That can cause problems because the needle is less lubricated I believe.

If you injected three times as you described, maybe you got three times what you intended!

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1 reply
Karen Anderson | @fresian1 | Oct 3 11:00pm
In reply to @windyshores "@freuab1 you turn the pen and feel the clicks. Then inject. The pen then goes back..." + (show)
@windyshores

@freuab1 you turn the pen and feel the clicks. Then inject. The pen then goes back to zero as @bluebonnet232 said. We could help more if we understood whether you are able to feel the clicks.

Having a piece of the needle stuck inside your skin sounds like a need for a quick MD visit. How did that happen? Did you do three injections with the same needle? That can cause problems because the needle is less lubricated I believe.

If you injected three times as you described, maybe you got three times what you intended!

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Yes, I used the same needle. I didn’t realize it could create a problem. So much I don’t know! I turned the pen before I inserted the needle. I heard the clicks. I think I felt them. But it seemed to me that as soon as I started to push in, the dial went back to zero. Maybe because it was such a small quantity? I pulled the broken off needle out with tweezers.

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1 reply
Karen Anderson | @fresian1 | Oct 3 11:01pm
In reply to @fresian1 "Yes, I used the same needle. I didn’t realize it could create a problem. So much..." + (show)
@fresian1

Yes, I used the same needle. I didn’t realize it could create a problem. So much I don’t know! I turned the pen before I inserted the needle. I heard the clicks. I think I felt them. But it seemed to me that as soon as I started to push in, the dial went back to zero. Maybe because it was such a small quantity? I pulled the broken off needle out with tweezers.

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I did feel tired and a bit sick to my stomach so I must have gotten some.

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1 reply
windyshores | @windyshores | Oct 3 11:04pm
In reply to @fresian1 "I did feel tired and a bit sick to my stomach so I must have gotten..." + (show)
@fresian1

I did feel tired and a bit sick to my stomach so I must have gotten some.

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The pen goes back to zero after you inject. Looks like you can tolerate a bigger dose! I recommend, based on experience, not reusing a needle!

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Karen Anderson | @fresian1 | Oct 3 11:47pm

Thank you, windyshores. I won’t do that again. I appreciate being able to come here with questions.

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2 replies
windyshores | @windyshores | Oct 3 11:54pm
In reply to @fresian1 "Thank you, windyshores. I won’t do that again. I appreciate being able to come here with..." + (show)
@fresian1

Thank you, windyshores. I won’t do that again. I appreciate being able to come here with questions.

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#fresian1 I should have said that a nurse at your MD office could be helpful and actually observe what you are doing. My response was a guess!

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