Tymlos side effects I've encountered

@windyshores , what was the reason for no evenity following Tymlos? How many Reclast infusions are being recommended? What specialty is the doctor managing your osteoporosis?

Endicronology.

Both docs say there is no data on Evenity after Tymlos and it is being studied. I mentioned that many on this forum are doing that, and that a patient featured by Lani Simpson MD in a masterclass online had more improvements doing that, but no dice. Boston is a conservative medical culture I think!

I am sensitive to meds and have fairly low kidney function so I am doing a test dose of Reclast- 1 mg versus 5m. That lasts 3 months. Neither doc would do full dose on me. If test dose is tolerable, then I will do 2.5mg every 6 months. I will be monitored with blood tests and can take a med break, maybe after a year depending.

I have had a very similar experience. After starting Tymlos in May at the full dose, I could barely walk. After finding this forum, I reduced my dose, but even at two clicks, my back, shin, ankle, and toe pain is sometimes debilitating. At four clicks, the nausea and vomiting are overwhelming. I was extremely fit, and now I feel like I should be wheelchair bound.

@amrh I didn't know two clicks even do anything. Do you think you have an allergy? Have you tried Forteo or Evenity? That sounds like a terrible experience,

I was tapering Tymlos because I was coming off and had Reclast scheduled for next week. I have ramped up quickly and lots of side effects at 7 clicks. Lasted 3 hours and now I am okay. Blood pressure stayed okay at 105/55.

I would really like to know how size and weight dependent the dosing is but I am sure there are no studies yet. I have told the company about doing partial dose with excellent gains.

I had been on Prolia for two and a half years with small but steady gains and no significant side effects, but my new APRN thought we should take a more aggressive approach. After the awful side effects began, I called my pharmacist who said they were extreme and recommended going back to Prolia, but when I contacted doc, she just sent a message to take 2 Tylenol and a hot bath. I kept trying, but am bedridden at 4 clicks. I am so worried that I am going to lose any gains I made with the Prolia. I am going to call my doc again and hope she will respond.
And yes, I agree about wanting more info on size/weight/dosing connections.

I had heard from a doc last week and also read in McCormick's "Great Bones" book (pg. 569) that Tymlos doesn't work well after Prolia and that you need to do Reclast or alendronate. I'll try to find it. It seems Evenity might be better but I don't know if there is data, and it might still be problematic. Ask an endocrinologist who is an osteoporosis expert.

The concern about losing bone density after stopping Prolia is a big one. You are so wise to be proactive.

ps here is the paragraph in McCormick's book but check with your doc:

"If you've been treated with demosumab, sequencing to teriparatide or abaloparatide (or even romosozumab) will increase bone porosity, accelerate bone loss, and heighten risk of fracture! If your doctor suggests this type of sequential therapy, please get a second opinion."

It is unclear what McCormick thinks about Evenity after Prolia but other sections of the book are more positive about that than Tymlos. But people mainly lock things in with Reclast. The timing of that is important. Maybe you could buy this book...or get it from the library. And talk with another osteoporosis doc.

According to McCormick and my doc, Reclast is usually given 6 months after Prolia is stopped, though it is much better to do CTX blood tests to determing the best timing.

Thank you so much fo this info. That is also in line with what my pharmacist says. Based on your information, I also just found this article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4620731/

From the link posted by @amrh: and why are docs prescribing Tymlos or Forteo after Prolia? Is it mostly PCP's?

"In postmenopausal osteoporotic women switching from teriparatide to denosumab, BMD continued to increase whereas switching from denosumab to teriparatide results in progressive or transient bone loss. Combination denosumab/teriparatide therapy followed by denosumab alone results in the largest 4-year increases in hip and wrist BMD. These results should be considered when choosing the initial and subsequent management of postmenopausal osteoporotic patients."

@txmom I am dealing with what to do next as well. My docs want to do a test dose of 1mg (full dose 5mg) of Reclast to "lock in" my gains, then I would do 2-3mg after 3 months. I have read a half dose is as effective and my endo wants to do that after the test dose if I tolerate that. I would be able to take a med break after a year or two, I think, because Reclast stays in the system.

My nephrologist is concerned about effect on my kidneys so I have one specialty conflicting with another. I have asked if I could go on Evenity after Tymlos and despite the fact that many on this forum are doing that, both my main endo and second opinion say no due to "lack of date."

I just cancelled my 7/10 infusion of Reclast and will continue Tymlos for a few months while I try to improve my kidney function. I will have done a full two year by October. I want to do a P1NP soon to see if it is still working.

@windyshores , I finished Tymlos after two years and am trying a vitamin regimen. Bone density showed a 10% gain in my spine and is holding after 3 months. 5000 units of Vit D, extra calcium, and zinc and am adding boron, plus one a day vitamin and Boost since I have lost so much weight. Good luck with your venture.