Hello, I joined today to get help in deciding what medication to begin

Posted by luluz @luluz, Apr 12 4:43pm

Hello, I need help in deciding what medication to begin taking for osteoporosis. I’ve been prescribed Tymlos and the box warning for bone cancer is very concerning. Prolia was second option but that also has its drawbacks. I would appreciate hearing from people who are taking these medications and if they have experienced any serious side effects.

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

The cancer warning on Tymlos has been lifted. Noone has gotten bone cancer from Tymlos. Maybe you saw older information online?

Prolia is very hard to get off - there is a rebound with loss of density and increase in fracture risk. Some people are saying 2-3 doses might be okay, followed by Reclast. My docs only use it if absolutely necessary!

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@windyshores

The cancer warning on Tymlos has been lifted. Noone has gotten bone cancer from Tymlos. Maybe you saw older information online?

Prolia is very hard to get off - there is a rebound with loss of density and increase in fracture risk. Some people are saying 2-3 doses might be okay, followed by Reclast. My docs only use it if absolutely necessary!

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I appreciate your reply. Thank you

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luluz, Tymlos is a very good choice. And I consider Prolia not good. Tymlos works by building new bone. Prolia works by preserving old bone. With Tymlos you get better bone.
You might ask your provider to order bone markers before your treatment begins and then at three months for the remainder of your treatment time. A fellow commenter wrote about being on Tymlos for two years without gaining bone. All these drugs work for some and not for others.
And some people have unwanted side effects. So keep posting. We have an astute poster who has clever ideas about avoiding those side effects.
I'm finishing a year on Forteo, a drug similar to Tymlos.

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lulutz,
Welcome to this site. Most of the helpful info I find - I find here. There is a poster on here who I trust more than I trust my doctors. WS, you know wjo you are. 🙂
I have reported on my drug journey here many times and will do so again.
Disclaimer: everyone is different and reacts differently to these drugs.
I did five months of Forteo with no side effects. Later, five months of Tymlos with no side effects. Yesterday, I had my 11th set of Evenity injections. No side effects. In June, I go on Reclast. Fingers crossed.

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There are several discussions on this forum with people providing their experience with Tymlos / Prolia that you can find using the "Search discussions" search box at https://connect.mayoclinic.org/group/osteoporosis/.
Example: I typed "Tymlos side effects" into the search box. It produced these results: https://connect.mayoclinic.org/group/osteoporosis/?search=tymlos+side+effects#discussion-listview

Good for you to find this group. I recommend doing your research, reading, and asking questions before making any decisions. For example, my primary care doctor felt I could wait 3-6 months before making a decision re: medications.

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@susanfalcon52

lulutz,
Welcome to this site. Most of the helpful info I find - I find here. There is a poster on here who I trust more than I trust my doctors. WS, you know wjo you are. 🙂
I have reported on my drug journey here many times and will do so again.
Disclaimer: everyone is different and reacts differently to these drugs.
I did five months of Forteo with no side effects. Later, five months of Tymlos with no side effects. Yesterday, I had my 11th set of Evenity injections. No side effects. In June, I go on Reclast. Fingers crossed.

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lulutz, good advice from susanfalcon52. It you tap on @windyshores you can see all of her posts comments and reactions.

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I have been on Tymlos for almost 2 years, going off in June. I’ve had very good results…an 11% increase in bone density in my spine. Side effects have been minimal and taking my injection before bed helps tremendously. Now, I have to decide what to take to replace my Tymlos so I don’t lose my gains. Prolia is out because of rebound fractures, Fosamax is out because of digestive side effects so my cardiologist is recommending bioidentical hormones. I wish I could remain on Tymlos longer than the 24 months but as of today, that’s not an option. As far as bone cancer, that black box warning has been removed. That warning was due to rats used for research developing bone cancer…they also received very high doses of the medication. I did extensive research before making my decision on Tymlos. It took me 2 years after diagnosis to agree to try it. But I have very severe osteoporosis so it was either a bone building drug or a drug that would do nothing for me. This journey is not an easy one but we have a lot of choices. Take one day at a time and do what you believe will work for u. 🌹 Rose

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Look at Michael Lavacot's YouTube video. I found all the answers to my questions there.

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@dooshie I am doing Evenity after Tymlos. I had to convince my doc!

Also, in place of Fosamax, you can do Reclast infusions. I am going to do a low dose with lots of hydration and tylenol: 20% dose every 3-6 months.

Michael Lavacot is on Prolia I believe. A lot of us are avoiding that. Maybe he is just doing 2-3 shots which some docs are now saying means less rebound.

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@windyshores

@dooshie I am doing Evenity after Tymlos. I had to convince my doc!

Also, in place of Fosamax, you can do Reclast infusions. I am going to do a low dose with lots of hydration and tylenol: 20% dose every 3-6 months.

Michael Lavacot is on Prolia I believe. A lot of us are avoiding that. Maybe he is just doing 2-3 shots which some docs are now saying means less rebound.

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I’m pretty hesitant in a 3 or 6 month infusion. At least with a daily injection, if side effects are bad, I can stop. Can’t do much with an infusion that last months. I’m avoiding Prolia for certain but will try the bioidentical hormones and then do another bone marker to see if they’re working. I don’t want to lose the gains I move had. Please let me know how the Reclast works out for you. Rose

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