TYMLOS FEEDBACK

I’m always nervous about where to give myself the needle. I’ve already made myself bleed once. I’m getting better as another Mayo Clinic poster told me about the dot chart. I find it very helpful.

My comment isn't good, but if it's of comfort I think it may be unusual. To say it quickly, Tymlos has affected me badly from the beginning. First my heart, and headaches, and depression. Finally, I was able to overcome those by reducing the dose all the way down to 3 clicks, that's all I could manage. Over time sometimes I'd try 4 clicks, but it was always bad, so I stayed with 3. I gained 12 pounds on Tymlos. Nothing else changed. Nothing. I have been on the same diet and everything else for many years. Then the worst happened! I started having a headache daily. Sometimes it was really bad. Sometimes not. But I toughed it out. THEN I noticed that I was losing my memory. I mean REALLY losing it! Serious things were completely forgotten. I have had a high IQ with a stellar memory all my life, so when I didn't remember what day it was, or that I had seen a movie or anything at all about it the week before, or which cabinet our glasses are in, I became alarmed. I started researching - I was a researcher in my career so it came naturally. Radius Health has been very cunning about their clinical trials. For instance, they have steadfastly avoided trials that included people on drugs known to cause osteoporosis, even though those people would be likely to use Tymlos. This way, there is no information about using Tymlos with those drugs - though there are interactions, and even adverse effects. So I stopped looking at Tymlos directly and started looking into the mechanism of action (how it works) and its effects. Sure enough I discovered that there is a definitive link between the stimulation and/or elevation of parathyroid hormone (PTH) and cognitive decline, memory loss, and even dementia. I said "stimulation and/or elevation" because PTH levels can still be within normal limits but cause cognitive decline merely by stimulating it. PTH crosses the blood-brain barrier and its action in the brain is not fully known, with the exception of the link with cognitive decline and dementia. There is so much drug companies don't know, but they are so very willing to risk lives. It may help to know that prior to retirement I was a clinician who also taught doctoral neurobiology and psychopharmacology. This is not new to me, but continues to disturb me and now it has caused problems in my own life I'm not yet sure I will come back from. As I said, my case MAY be unusual. Or it may not be but we won't know for a while IF reports are made public. Stay safe and I wish you only success!

@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 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.