Tymlos side effects I've encountered

I just do Nordic Naturals gummies- 1,000 units Dx combined with 45 mcg K2. I have trouble taking a lot of pills. I am sure others will chime in with better brands.

Thanks!

@maureent I had bone marker blood tests done at 18 months that showed Tymlos was no longer building bone. It might have stopped even earlier. At 18 months I had gained 20% in spine going from severe to borderline. Maybe you could consider stopping earlier. I did do 2 years but only for maintenance and to delay decisions about follow up because I was having other health problems.

You could do bone markers and maybe a DEXA to see where you are.

Radius Assist, the financial assistance program for Tymlos, only covers 18 months which may say something!

I saw a new endo PA yesterday. When she saw the results of my 24 hour urine test (calcium value 338 with reference range 35-250), she said this is when they typically stop Tymlos. High calcium can lead to kidney stones. She wanted me to switch to Prolia. I said I didn't want that. She then realized that I still needed to build bone. She doesn't like Evenity, because she thinks it can cause a stroke. When I explained that I was purposely eating foods high in calcium trying to decrease my dependence on supplements, she suggested that I stop taking the supplements for a month and have another 24 hour urine test to see if that takes care of the high calcium problem. I like this option. She will present my case to the endo who supervises her when he gets back from vacation. My next appointment is with him.

This all sounds good @drsuefowler except it is not proven that Evenity causes stroke. Compared to a placebo, there was no difference; compared to alendronate there was a small difference, resulting in the black box warning. But one study I read attributed this to chance. More research is needed since it has not been in use for a long time.

Do you have special risks for stroke?

I too was experiencing these side effects. I went through one pen and suffered. About 10 days in, I began to get hip pain, leg muscle pain and weakness, knees hurting, shin ones hurting and calf muscle pain. Even had issues with the tops of my hands. My Dr. suggested stopping for a week and resume the medication. If pain continues then possibly switching medication. It's been two weeks and feel much better already. Don't think I'm going to go back even if I have to "take my chances".

@geol if it is Tymlos you are taking, you could go down to 4 or even 2 clicks instead of 8, and work your way up. Even 4 clicks (1/2 dose) can be therapeutic.