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.

@windyshores

@candy209 Sorry you went through that but it is reassuring that you felt sick for weeks from contrast and are now feeling better. I am rarely scared but I have been feeling like I was poisoned! And yes my kidney function suffered. My nephrologist said oral versus IV was fine but it wasn't. I didn't even need the darn scan!!

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I am so sorry. I was the same. Never felt so scared in my life. So I started drinking plenty of good water. I tried to limit my protein and looked online and ate things that heal the kidneys and vegetables that can detox them and the liver. There are all kinds of veges that naturally do that. I got plenty of sleep and walked as much as my body would allow. Lots of prayers and slowly I got better. I still am tired at times but all labs are back to normal. I didn’t need my scan either it turns out. I was pressured to get one by my primary care who should have never done it. Prior to that I was full of energy and looked great. I am getting my groove back one day at a time. You will too. It did feel like I was poisoned as well.
Best wishes to you windy shores. Thank you for all your support.

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@candy209

I am so sorry. I was the same. Never felt so scared in my life. So I started drinking plenty of good water. I tried to limit my protein and looked online and ate things that heal the kidneys and vegetables that can detox them and the liver. There are all kinds of veges that naturally do that. I got plenty of sleep and walked as much as my body would allow. Lots of prayers and slowly I got better. I still am tired at times but all labs are back to normal. I didn’t need my scan either it turns out. I was pressured to get one by my primary care who should have never done it. Prior to that I was full of energy and looked great. I am getting my groove back one day at a time. You will too. It did feel like I was poisoned as well.
Best wishes to you windy shores. Thank you for all your support.

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I am so glad you are feeling better! My PCP pressured me as well. I don't know her well. I am used to a more collaborative approach and my other docs avoid scans as much as possible. I may change docs. I have always seen the NP, and was trying to get to know my PCP!

I am hydrating as well 🙂

Sorry for the tangent on the thread but @candy209 really helped me with this issue. Back to the regular programming!

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@bjmullins

I am 77 years old and am following people who are taking Forteo which my doc wants me to go on. I am finally feeling better than I have in years because I almost died a year ago. I live alone because of the death of my husband a month ago. I just don't want to take anything that rocks my boat... don't want a headache, nausea, hair falling out, etc. I just want to be careful and hope and pray I don't fall..... am I crazy???

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Same here.
I am following posts about all the osteoporosis medications.
I am your age, I too live alone, bc I recently lost my husband. Pray every day that I won’t fall .

But- Im afraid the effects of the medication will “rock my boat” as you say.
I already struggle with lack of energy, achy muscles, depression, lack of desire to participate in daily activities; I can’t imagine how much worse it could be if I get those side effects from the medications.
I’m afraid medication will be more negative than positive for me.
Very difficult decision of which one, if any , could be best for me.

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@cez

Same here.
I am following posts about all the osteoporosis medications.
I am your age, I too live alone, bc I recently lost my husband. Pray every day that I won’t fall .

But- Im afraid the effects of the medication will “rock my boat” as you say.
I already struggle with lack of energy, achy muscles, depression, lack of desire to participate in daily activities; I can’t imagine how much worse it could be if I get those side effects from the medications.
I’m afraid medication will be more negative than positive for me.
Very difficult decision of which one, if any , could be best for me.

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I am curious where everyone gets info on terrible side effects. From forums, or from the websites that list possible side effects?

I have found Tymlos tolerable- yes there are side effects but tolerable. Some people do fine. I did fine by ramping up the dose. I have had fractures and just want people to know that those are way way worse than any side effect I have had. Not true for all. But it is likely that people who have no problems at all with meds aren't posting a lot!

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@windyshores

I am curious where everyone gets info on terrible side effects. From forums, or from the websites that list possible side effects?

I have found Tymlos tolerable- yes there are side effects but tolerable. Some people do fine. I did fine by ramping up the dose. I have had fractures and just want people to know that those are way way worse than any side effect I have had. Not true for all. But it is likely that people who have no problems at all with meds aren't posting a lot!

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windyshores, have you finished Tymlos now? Did you decide to follow with Reclast? If so, any issues with Reclast?

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@leeosteo

windyshores, have you finished Tymlos now? Did you decide to follow with Reclast? If so, any issues with Reclast?

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@leeosteo thanks for checking in. I am still trying to get my kidney function up. I see my nephrologist next week. She needs to clear me. In the meantime I am staying on Tymlos longer than expected! My endo ordered a 20% dose of Reclast and then after three months I have more. Up to me what dose I get. The first dose is a test dose.
How are you?

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@windyshores

I am curious where everyone gets info on terrible side effects. From forums, or from the websites that list possible side effects?

I have found Tymlos tolerable- yes there are side effects but tolerable. Some people do fine. I did fine by ramping up the dose. I have had fractures and just want people to know that those are way way worse than any side effect I have had. Not true for all. But it is likely that people who have no problems at all with meds aren't posting a lot!

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It’s true that the medication websites list side effects, but I much prefer been reading the forums, bc they are the words and feelings of their personal experiences w/the drugs.
I have read most of the osteoporosis and bone health posts/comments, but specifically I have focused on Prolia.
My information about side effects was taken from reading the comments posted by the 67% of people whom rated the drug with a score of 1 out of 10 on the Mayo Clinic Prolia review.
*see screenshot of the Prolia review attached below.

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@cez

It’s true that the medication websites list side effects, but I much prefer been reading the forums, bc they are the words and feelings of their personal experiences w/the drugs.
I have read most of the osteoporosis and bone health posts/comments, but specifically I have focused on Prolia.
My information about side effects was taken from reading the comments posted by the 67% of people whom rated the drug with a score of 1 out of 10 on the Mayo Clinic Prolia review.
*see screenshot of the Prolia review attached below.

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My doc won't even use Prolia unless absolutely necessary!
I didn't see the review section. Do you think reviews skew negative?

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@curlylocks

After finding out about my results from my primary doctor, I went to Wake Forest Baptist Medical's Fracture Liason Dept. for a second opinion. They concurred with my primary doctor. Since it was more cost effective than Forteo and they determined the side effects less harsh for my health concerns, both doctor's recommended the same drug.. Unfortunately, I need a knee replacement and cannot go forward with this surgery until I rebuild bone. My Part D insurance doesn't provide good coverage, I am hoping the pharmaceutical company will help with the cost. I almost passed up traditional care an alternative treatment, but decided otherwise.

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I get it through RX Advocates for 70.00 a month .. My Medicare part B and D didn't pay enough.

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@ferrer1105

I start Ttmlos next week. Quite nervous right now. I hope this works for me. These chats really help. I was freaking out because I didn’t see much chat about Tymlos. Now I see it’s the newest on the market !

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Hi and welcome. I just started my second month on Tymlos. I have had no side effects. I was nervous because many people seem to. However, I took the advice (after checking with my doctor) to start with 4 "clicks" for a few days....no side effects so I increased to 6 clicks for a few days.....no side effect........so I increased to the full dose and have had no side effects.

I am wishing you much progress and support on your journey.

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