TYMLOS FEEDBACK

Hi
I don’t do well on meds so Dr is starting me on 4 clicks for 3 weeks then full dose to c how I do

Osteo42, when you dial the dose on the pen there are 8 clicks on the way to 80 mcg. If you’re not noticing them it may be that you’re turning the dial too fast. Each click is for 10 mcg of the med. Some people find the full dose to be too much for them, so they start lower and titrate up. Tymlos - the company - seems to not acknowledge that this can be done, but if you read a couple pages of this forum you’ll see that many people have success doing it. Whatever need to go, rest assured that we’re all anonymous here 🙂

I learned from the site that I can just go up to 4 mcg … I could not take eight clicks or 80 µg…. The pain in my feet and hands were unbearable. But I’m doing great on the 4mcg ….. When I try to go up even to five I still getting the pain then I have to wait a week or two with nothing and then start again so I’m just proceeding with the four MCG’s and will do a bone density soon to see if it’s working…. I’m only 411 in height and 105 pounds so hopefully that’s enough dose for me

I was very hesitant to take meds, but after talking to a very fit retired PT I decided to try Tymlos. I started in January and had a few uncomfortable symptoms the first month or two, such as, racing heart and headaches. But by the third month I was very lethargic and had jaw pain. When I called the endocrinologist to inform him he told me to try Prolia. I didn’t want to and then my insurance wouldn’t cover it. I spoke to a nurse when I called to let them know I didn’t want to take Prolia and she encouraged me to do Bone Builders classes. I was surprised that they didn’t try to convince me to try another Med. I’ve just started Bone Builders and I’m doing weights as well as taking a Calcium /Magnesium supplement. I’m also eating a lot of protein and more dairy. I didn’t mind the daily injections. I worry about the side effects of the meds too. They all sound scary especially necrosis of the jaw! BTW - my dexascan #’s were -3.2 lumbar spine and -2.6 femoral neck.

Can you tell us more about Bone Builders classes? Are there lots of locations? Thanks!

I live in a pretty rural part of VT and there are two senior centers that offer Bone Builders classes near me. They are free. I just started one that is held virtually 3x/week. I'm working part-time, so can only attend the Friday morning class. It's very scripted. We use weights and bands and they cover all muscle groups as well as balance exercises. It takes almost exactly 1 hour to complete a full class.

Hi! It was recommended on one thread to read ‘Great Bones’ by Keith McCormick. I am find it to be very thorough and educational. It may give you some answers. https://greatbonesconsulting.com/books/great-bones-taking-control-of-your-osteoporosis/

Can I ask what your T scores are? I am 68 with -4.0 lumbar spine and -2.5 femoral neck. With these results, my endo wants to put me on TYMLOS. I am still doing the research because, too, wonder if the drug is worth it.

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 Can I ask if you are going to use any other medication for osteoporosis? I was prescribed Tymlos but don’t want to go down that path if I don’t have to. Thanks!