1. < Osteoporosis & Bone Health

TYMLOS FEEDBACK

Posted by harryboy7 @harryboy7, May 27 9:17am

I am 70, and have severe osteoporosis, I have had several fractures over the years. Recently I developed a t8 mild compression fracture. All my life I was super active, biking, hiking, swimming, skiing, I am vegetarian. Have lived a healthy life style. In my 60's my body started breaking down. I am so depressed.
My Endocrinologist wants me to go on meds. I have severe osteoporosis (had a recent Dexascan). Will medication even make a difference at this stage of my life ? Will bone classes about Osteoporosis even make a difference?The more activity I do, I get stresses fractures.

Tylmlos is the med my doctor wants me to start. If I can't afford that, the second choice is Reclast. So afraid of side effects. Tylmos builds bone. The thought of injections are daunting.

I haven't seen much feedback from the discussions regarding Tymlos. Would love your thoughts. Is it worth going on a medication at this point?

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

edturner | @edturner | 5 days ago

I have to make a decision this week on Tymlos. I was on Prolia for years but stopped to have tooth extraction. My endocrinologist just wanted me to start back on Prolia so I went to a bone clinic the hospital has and was recommended Tymlos . My concern ( other than sure effects and shot) is that my hips are my worst and at most risk and Tymlos does not seem to help as much for hips . Has anyone had good results with hip improvement ?

REPLY
npoursafar | @npoursafar | 4 hours ago
In reply to @beanieone "I, too, am about to turn 70. I decided, at the tender age of 68, that..." + (show)
@beanieone

I, too, am about to turn 70. I decided, at the tender age of 68, that compression fractures (I've had four since 2017), and the debilitating effects we may suffer from them were riskier than the meds and chose to begin Tymlos, followed by Evenity and then Reclast. For the record, I did not tolerate Tymlos well and was only able to make it to about 9-1/2 months, but I've had Reclast infusions, off an on without any side effects since about 2011, and depending on what my rheumatologist says, I will have another infusion in July/August of 2025. Evenity and Reclast were easy-peasy for me.

Talk to your doc, do research, and decide what's best for you. Remember that we are all different and a med that works for one may not work for all. Listen to your body and advocate for your health. I tried to tell my doc that Tymlos was causing my grief, but he replied with "that can't be, none of that is listed on the website as an adverse reaction." Piffle! Best wishes to you as you make your decisions!

Cheers! Happy Spring!

Jump to this post

What were your side effects? Please share with us, I am new on Tymlos only one month. I am researching still about people’s comments and found getting a belly fat on some of patient. Please you share your feedback about Tymlos, why You discontinued it? I know the common side effects are nausea and dizziness that when you inject at night before your sleep, you won’t feel any nausea. Thank you I am looking forward to hearing from you.

REPLY
1 reply
beanieone | @beanieone | 2 hours ago
In reply to @npoursafar "What were your side effects? Please share with us, I am new on Tymlos only one..." + (show)
@npoursafar

What were your side effects? Please share with us, I am new on Tymlos only one month. I am researching still about people’s comments and found getting a belly fat on some of patient. Please you share your feedback about Tymlos, why You discontinued it? I know the common side effects are nausea and dizziness that when you inject at night before your sleep, you won’t feel any nausea. Thank you I am looking forward to hearing from you.

Jump to this post

Hi @npoursafar,

On Tymlos, I had many adverse reactions. I injected in the morning and at night - I couldn’t escape the nausea, even with Ondansetron (my doc couldn’t believe it didn’t help).

I also had severe shoulder, back, and chest pain, the “broken ankle” feeling that others report, racing heart (+120 at times). If I think about it, I’m sure I’ve forgotten a few. I continue to have a jelly roll around my middle that I didn’t have before Tymlos.

This medication didn’t work for me, but it obviously works for others. I did have excellent t-score improvement, but my DEXA was after 9-1/2 months of Tymlos and about 6 months of Evenity so I’ll never know which med worked for me; perhaps it was the right dosage/right sequence for my old bones 😉.

Cheers!

REPLY
1 reply
npoursafar | @npoursafar | 2 hours ago
In reply to @beanieone "Hi @npoursafar, On Tymlos, I had many adverse reactions. I injected in the morning and at..." + (show)
@beanieone

Hi @npoursafar,

On Tymlos, I had many adverse reactions. I injected in the morning and at night - I couldn’t escape the nausea, even with Ondansetron (my doc couldn’t believe it didn’t help).

I also had severe shoulder, back, and chest pain, the “broken ankle” feeling that others report, racing heart (+120 at times). If I think about it, I’m sure I’ve forgotten a few. I continue to have a jelly roll around my middle that I didn’t have before Tymlos.

This medication didn’t work for me, but it obviously works for others. I did have excellent t-score improvement, but my DEXA was after 9-1/2 months of Tymlos and about 6 months of Evenity so I’ll never know which med worked for me; perhaps it was the right dosage/right sequence for my old bones 😉.

Cheers!

Jump to this post

Thank you for sharing your experience. I hope you are doing better now and then too. Have a great weekend

REPLY
View MoreView Less
Please sign in or register to post a reply.