Zero Results Tymlos

Hi
my spine Dr. indicated I needed to take Tymlos. I had a Dexa scan and it showed I was
very very weak on Bone, thus he could not operate on me unless I took Tymlos.
How did you feel taking it, it shows many issues with it. Thank you

I've dealt with two different doctors on this, and you do need to be careful who you go to. They are supposed to take blood tests before you start treatment, and then after three months, to see if you are responding. It makes no sense for them to wait a year to see how you are responding.

Also, one doctor had me take a blood test right in his office, in the middle of the day. I spoke with Dr. McCormick about this, and he said "those results are meaningless." You're supposed to do the tests first thing in the morning, after fasting, and after not taking any calcium supplements for two days. The numbers can be very different midday, after eating, and so on.

My approach now is to have periodic consultations with Dr. McCormick. My other doctor is there to order prescriptions, blood tests, and DEXA scans. He's "treating" me, but I make sure to ask for something if I want it. And the next time I have blood tests, I'll just have him order the tests and then I'll do it at my local lab on my schedule.

These blood markers are controversial in the endo field. My doctor, who is "world class," said an entire conference could focus on this one question alone. He does not use CTX and P1NP, and says they do not really reflect what is going on in bone. Another doctor I see does use them but skeptically. McCormick relies no them heavily.

My bone markers do not match what I would expect from the gains in my DEXA. I don't know what to think and don't rely on bone markers for treatment decisions, though they are interesting. I do them properly. Since there is so much difference of opinion, I am skeptical of all of them.

Tymlos may improve bone quality even if bone density and bone markers do not show progress- I was told by my doctor.

This is highly dependent on the individual. I've been taking it full dose for one month. I'm a 65-year-old male, 175 pounds, so maybe my experience is going to be different than a smaller, lighter female. I have mild lightheadedness for around 30 minutes, and then it goes away. But, I've read plenty of other experiences here where people have lots of trouble with side effects.

One technique that has worked for some people is to start off with a low dose and then gradually increase it, to give your body a chance to get used to it. The Tymlos pen has a little clickable wheel. If you click it all the way to the max, that's a dose of 80. But, you can also click it just 2-3 times to get a lower dose (I think each click equals another 10.) Given that you'd be taking Tymlos for at least a year, there's no harm in slowly ramping up over the span of a few weeks. Also, some people never get up to the max dose, and they still had good results.

Keep in mind that the people who have trouble with side effects are more likely to post about it on message boards, vs. the people who tolerate the medicine well, so it can give the impression that there are lots of problems with the drug when in fact most people do OK with it. The only way you will know is to try it.

There's no question that dealing with osteoporosis can be a confusing and frustrating experience. Most other things, you expect the doctor to say "let's do this, it's standard treatment, here's what to expect." Here, you get experts who disagree with one another.

McCormick does point out that there's a difference between bone density and bone strength. I asked him about his own treatment, given his long history with fractures from a relatively young age. He took Forteo many years ago, but nothing since. He manages with nutrition and exercise. He said his spine is a -3.3. He is around 68 years old and still competes in triathlons.

@njx58 McCormick did (short term) Fosamax after Forteo, back when those were pretty much the only options. It is helpful to remember he did not go through female menopause. I have no idea what male hormonal changes might do for bones.

I was also told by my “world class” endocrinologist (who has done many studies herself on the effects of osteoporosis medications) that Forteo (similar to Tymlos) will strengthen bones even if increased density doesn’t show up on your DEXA. It can take years for the new bone to mineralize. Forteo (Tymlos) creates tunnels in bones which in effect creates new branches of bone which strengthen the bone overall. None of my endocrinologists use bone markers to determine if treatment should be continued or stopped, so I’m personally debating whether to get any done at my 3 month mark.

I think it is still standard practice to go on a bisphosphomate after taking Forteo. I was told I could choose between a Reclast infusion or a daily/weekly/monthly bisphosphomate pill. One lady on this forum chose BHRT to lock in gains.

Thanks- you make a great point about male vs. female. My understanding is that lower testosterone in men can contribute to bone loss - and lower levels are common as men get older. Testosterone is one of the markers McCormick tests for in men.

Yes @lynn59 bisphosphonates are used to lock in gains after bone builders. I just wanted to make it clear that McCormick didn't just do Forteo.

@njx58 McCormick was quite young when his bone density was so severely low, and he had so many fractures. Not sure if his triathalon work was a factor, but age wasn't!