TYMLOS FEEDBACK

My doctor had me inject the needle into my thigh which has worked out fine. Occasionally there will be a small bubble of blood that I simply wipe away. My friend who is a retired surgical nurse explained that this is caused by the needle going into a tiny capillary (not seen from the surface) and is not a problem.

Thanks I appreciate your info. I will ask my Dr.

Felice

@surah05, My fear of dementia is the reason why I stopped taking Forteo after 6 months and went back on a half dose of Tymlos. I can think better now, but was wondering if these medicines are too similar. Thanks for your input.

Thank you for your honest review about Tymlos. I personally suffered severe adverse reactions from my first Evenity treatment. I immediately quit. Took a while to feel like me. My doctor wanted me to try Tymlos and I stated that I would not entertain drug therapy. I always try to be positive as many have good results. However, I still think it’s highly important to let others know your personal experience so they can weigh their options.

I also had a strong reaction to Evenity and quit. I am now almost at 18 months on Tymlos. I won't know the results of the treatment for another few weeks, but I had no adverse effects at all. Reactions seem highly individual!

@surah05,
Thanks for your very frank but depressing comment. I have always been an anti-drug person, using homeopathic alternatives and such as much as possible.
But this osteoporosis journey has left me with what I consider no choice other than meds. I have had 2 compression fractures- the last was very significant and I am still suffering from it. Also broke my clavicle 5 years ago in a bike accident and a rib a few months ago from sneezing. My dexa score has been bad since I started getting them 5 years ago and I was advised to go on meds. I refused and now I am in pain every day from the last compression fracture.
I have been on TYmlos for 4 months and I am thoroughly and completely exhausted. I used to garden, paint on my feet for hours, and go to exercise classes 5 days a week until the last fracture. My quality of life has been changed considerably.
I have a fear of dementia because my husband has it, and it is breaking my heart watching him decline. My mother also had Alzheimers which was heartbreaking.
If this is truly a risk, I WILL stop taking this drug, but how can I know? My endocrinologist blows me off every time I question him about anything.
I also have had a history of high cortisol levels, probably elevated from stress. In recent months , not only am I exhausted, but I am very anxious all the time. My husband's condition and our future is part of the stress, of course.
I don't see how being exhausted is going to continue to grow new bones either! I still push myself to go to exercise a few times a week, but my legs feel like lead and I don't enjoy it.
I wish I knew what to do.
Thanks for the info. Drug companies need to be upfront about everything, but instead it's always about profit.

I don't have a great answer for you, just wanted to say you're not alone. I was on Tymlos and worked through the first two weeks of terrible headaches, then after a few months I felt similar to what you're describing. Felt like I was dragging and didn't have my usual energy, like I was wearing a lead blanket all the time. When the night leg cramps became severe I couldn't take it and stopped. Doc gave me Forteo and I procrastinated for so long I'm sure it has expired. I feel so much better now that I'm off the Tymlos so haven't been able to bring myself back to nightly shots. I know it's just denial and when the next dexa scan shows I'm worse, I'll have to go back.

I was always super active and healthy, never smoked, don't drink, not a lot of soda, and no stomach issues. No family history of osteoporosis.

So I was gobsmacked when I had a compression fracture in L1. I am female, will be 70 y/o next week, and osteoporosis was the last thing I could imagine getting. That said, the compression fracture was so painful, I didn't want to go through that again.

In 2016, I was riding my mountain bike and got thrown over the handlebars on a steep hill. I dropped about 10 feet onto a slab of granite rock. This fractured my pelvis in 2 places. Did it hurt? Hell, yes! Search and Rescue ambulance had to come get me, and I was on crutches for 3 weeks. Then I walked away, whistling, because it healed and it was like it never happened. The orthopedist laughed and said, "You just gave yourself a DEXA scan, and you passed, because if you had osteoporosis, your pelvis or hip would have shattered."
So in 2024, a vertebral compression fracture from sitting down in the snow so I wouldn't ski into a fence? Such a minor thing compared to the bike accident. The only thing that occurred between those 2 events was that I had Covid 19 four times. I'm a physician and fully vaccinated, but I'm still in harm's way every day. Studies show that even a mild case of Covid 19 causes a huge amount of inflammation and rapid bone loss in animal models. So maybe that is what happened, but I was furious and sulking. My whole life (and friend group, plus husband) are all about skiing, riding bikes and being outdoors.

I found the best endocrinologist I could, a great lady who trained at UC Davis. She put me on Tymlos shots at 80 mg and I had no side effects except once I got a bumpy rash at the injection site which went away in about an hour.
In seven months, my vertebral T-score went from -3.1 (osteoporosis) to -2.1 (osteopenia). Holy smokes! Guess who's skiing and riding her mountain bike again? And I still have over a year of shots left. I am hoping my bones will become normal again.

Things I did in addition: I was already taking calcium and vitamin D3, so I kept that up. Began eating more protein (i don't like meat but eat some now. I always had dairy products. I got a Chinese herb called Drynaria fortunei, which they use for broken bones. I went on estrogen patch, as estrogen is very important for maintaining bone health. I got a vibration plate and use that but not optimally, just when I think of it, maybe twice a week. I do squats with a 15 pound dumbbell.

I am steamed about how women's health is ignored. It's like once we are past childbearing age, we're suddenly not important anymore. I ran across several doctors, including a youngish male ObGYN, who have no clue about hormone replacement therapy or anything to do with female sexual functioning. Just because you're past the age of 50 doesn't mean that you don't want to have fun or a sex-life. And now we're supposed to die in childbirth too, if everything doesn't go perfectly! I'm pretty disgusted, but Tymlos gave me my life back, at least.