1. < Osteoporosis & Bone Health

Zero Results Tymlos

Posted by kinglor @kinglor, Apr 4 7:53am

I got ZERO results with Tymlos. I was never advised to get a scan after a year to measure response to the drug. I wasted time and money. Be careful who you go to.

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jasperina | @jasperina | Apr 14 10:15am
In reply to @windyshores "These blood markers are controversial in the endo field. My doctor, who is "world class," said..." + (show)
@windyshores

These blood markers are controversial in the endo field. My doctor, who is "world class," said an entire conference could focus on this one question alone. He does not use CTX and P1NP, and says they do not really reflect what is going on in bone. Another doctor I see does use them but skeptically. McCormick relies no them heavily.

My bone markers do not match what I would expect from the gains in my DEXA. I don't know what to think and don't rely on bone markers for treatment decisions, though they are interesting. I do them properly. Since there is so much difference of opinion, I am skeptical of all of them.

Tymlos may improve bone quality even if bone density and bone markers do not show progress- I was told by my doctor.

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My endo would not do the bone marker tests. He said they are more valid on a population basis than an individual basis and it would not change what he is recommending. I don’t have a lot of Dr choices where I live and it took me many months to even have a consultation with him.
We are currently in an appeal process for my insurer to cover tymlos.
Meanwhile, I try to do all the things that support general good health.

REPLY
ripley | @ripley | May 18 11:43am
In reply to @mmodestti "I’m sorry you didn’t get the expected results. I guess every person reacts differently. After only..." + (show)
@mmodestti

I’m sorry you didn’t get the expected results. I guess every person reacts differently.
After only 7 months of treatment, even though I never got to the recommended dose of 80 mcg. per day (I could only do 60 mcg.), my spine T scores went from -4.3 to -3.4 and my hip went from -3.2 to -2.9.
And when I started treatment it had been almost a year since I had the DEXA, so it was probably worse when I finally started on Tymlos. I haven’t had any new fractures. For me, the side effects have definitely been worth it.

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What did your Dr say about you only doing 60mcg? I'm assuming you had intolerable side effects going above that? Did you take Fosamax or another drug after the Tymlos?

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ssapp1 | @ssapp1 | May 19 8:34am

@kinglor - I think different people have different responses to drugs. I gained bone density on Tymlos more than any other osteoporosis drug. I went a little backwards on Evenity, which my endo said was unusual. On the Tymlos, I did the full dose and I walk and do some other exercises. I feel that diet snd exercise goes along with it too.

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esb13 | @esb13 | May 19 9:51am

I am so sorry to hear this. I have been anxious to start due to potential side effects but starting journey on Thursday and will take all the advice anyone wants to share.

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1 reply
ripley | @ripley | May 19 11:38am
In reply to @esb13 "I am so sorry to hear this. I have been anxious to start due to potential..." + (show)
@esb13

I am so sorry to hear this. I have been anxious to start due to potential side effects but starting journey on Thursday and will take all the advice anyone wants to share.

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Is it Tymlos that you are starting on Thursday? Please share your experience, such as starting at a low dose and working up, side effects etc? That's one drug my Dr is recommending for me. Also, have you taken any other drugs for your bones? I am still trying to decide what to do. thanks.

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1 reply
esb13 | @esb13 | May 19 12:24pm
In reply to @ripley "Is it Tymlos that you are starting on Thursday? Please share your experience, such as starting..." + (show)
@ripley

Is it Tymlos that you are starting on Thursday? Please share your experience, such as starting at a low dose and working up, side effects etc? That's one drug my Dr is recommending for me. Also, have you taken any other drugs for your bones? I am still trying to decide what to do. thanks.

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Yes -tymlos! I will do the first dose in doctor office Thursday so I think we’ll start at 6 turns to see what if any side effects I’ll have. 4 seems too low and 8 too high. I have osteoporosis in my spine only and reclast stabilized me for 4 annual doses but didn’t help T score significantly so I’ve been told Tymlos should increase spine by 10% which will take me out of osteoporosis range. Then they’ll do reclast to “lock it in”. Fingers crossed!! I am starting a journal to record my 2 year journey on Tymlos. My MD says just about all her patients have little to no side effects after 2 weeks. This forum suggests otherwise so I am going to have to find out for myself 🙂 I am happy to share thoughts and updates here anytime. I also will keep up my yoga/strength practice which has kept me strong and limber and hope hope hope I don’t have the extreme muscle pain and cramps others speak of. I’m going to start taking it at night and appreciate one comment which said taking it in morning helped her not think about side effects. I’ll keep you posted. Let me know what you decide!!

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