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.

susanjohnston | @susanjohnston | 1 day ago
In reply to @fili123 "I’m always nervous about where to give myself the needle. I’ve already made myself bleed once...." + (show)
@fili123

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.

Jump to this post

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.

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fili123 | @fili123 | 1 day ago

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

Felice

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drsuefowler | @drsuefowler | 1 day ago
In reply to @surah05 "My comment isn't good, but if it's of comfort I think it may be unusual. To..." + (show)
@surah05

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!

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@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.

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sedrake51 | @sedrake51 | 8 hours ago

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.

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janism | @janism | 3 hours ago

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!

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mary1951 | @mary1951 | 1 hour ago

@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.

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