Tymlos side effects I've encountered

@ymv I have gone up and down a lot. I had excellent gains on 6 or 7 clicks and have never done 8. For me the difference between 7 and 8 clicks in terms of side effects is huge.

ps If I have something important to do, some days, I do 6!

I have been having no side effects with 7 clicks, to the point that I worried the pen might have been frozen during shipping. So to test it, I did 8 clicks today and am overwhelmed with side effects. I cannot get over the difference between 7 and 8.

My endocrinologist, who is chief of endo at a top hospital in the country, told me yesterday that my story has "inspired" him to recommend ramping up to other patients. He and I have struggled for 15 years to get me on something I could tolerate. Result was several fractures. He is very happy with my improvements.

ps due to changing kidney values I am staying on Tymlos past 22 months, until my nephrologist clears me for Reclast. My endo will do a 20% test dose to see how I do. He is ordering a slow infusion and I will hydrate a lot before, during and after. Hoping for Sept, He said there is a study out on Forteo for 36 months. After the first year gains may be small but not zero, he said.

I was in great shape 4 months ago: elliptical, Nordic Track, swimming, golf, weightlifting. 3 months after starting Tymlos, I have painful ankles, shins, back and knees. I can walk 7000 steps with pain afterwords and can do nothing else. I recently returned from a trip and required a wheelchair to go from the plane to the airport exit.

I have seen 8 physicians and no one can figure it out. I do have new left calf atrophy so there may be a true ruptured disk component but my symptoms are way more extensive. I decided last night that I need a month of Tymlos to see how it is affecting me. I don’t want to reduce the dosage because I need to see what Tymlos is really doing so stopping makes more sense.

I have to ask my MD if I need to replace it with something else. The pain has destroyed the quality of my life and the (current) treatment is worse than the disease. My next step is to go to a major neuromuscular center (like Mayo Clinic) if I can’t get resolution.

GSW Pitt

Type;

I am taking a month OFF Tymlos…

GwPitt

@gwpitt is it possible the pain is from bone growth? If so it slows down after 6 months. So sorry you are going through this. I have side effects but I have to tolerate them because I have several fractures. I have found strategies to keep going (as you mentioned, not doing full dose). I hope your pain improves! Maybe Forteo or Evenity would work for you if this is not growing pains.

Thanks to everyone for your feedback regarding vitamin K

Hi Everyone.

I started Tymlos this week. I did two does at 4 clicks then 2 clicks with 6 clicks and tonight I took my second full dose. So far, so good. No effects that I know of. 😀

I so appreciated everyone's shares and the idea to start gradually.

I have also purchased 2 books recommended on this board "Great Bones" by R. Keith McCormick and
"Exercise for Better Bones: The Complete Guide to Safe and Effective Exercises for Osteoporosis" by Margaret Martin.

So thank you for the sharing and I wanted to pass along my progress.

So glad you’ve found information to get you started. If you don’t know this , I’ll also share that Margaret Martin has her own website that’s filled with so much practical information as well …for example - how to work in your garden, how to be safe shoveling snow, etc… you get the idea , in addition to the exercise stuff. She has a big presence on YouTube , and shares soo much that’s easy to find there. Good luck , those two sources are a wonderful place to start. You’ll feel so much better in your understanding of stuff related to osteoporosis in no time.

That’s fantastic. I hope I am the same once I start.
Did you do anything special like extra hydration?
All the best to you.

For anyone else out there like me: I'm approaching 4 months on Tymlos and still only at 4 clicks. It's all I can do, and I just have to hope it will be enough.