Hello, I joined today to get help in deciding what medication to begin
Hello, I need help in deciding what medication to begin taking for osteoporosis. I’ve been prescribed Tymlos and the box warning for bone cancer is very concerning. Prolia was second option but that also has its drawbacks. I would appreciate hearing from people who are taking these medications and if they have experienced any serious side effects.
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Not being astute should preclude my answer, but no.
Forteo and Tymlos work as a burst of parathyroid hormone. Within seconds of the injection your blood vessels relax and your blood pressure drops. your heart rate picks up to keep enough blood circulating.
The effect of this vasodilation can be headache and dizziness resulting in loss of balance.
You can counteract the effect by increasing fluid volume by drinking a glass of water. Salt works just as fast to constrict blood vessels, also withing seconds of the tongue's contact. I like to have a couple of blue corn chips for the salt with the water. It is also good to take the
shot while sitting down, and to be carefully especially at first to avoid balance challenge activities in the first four hours.
I could not tolerate Forteo. I liked Tymlos because the dosing pen is adjustable. I started with two clicks- full dose is eight. And as my body adjusted, I increased, finally reaching 7 our of 8 clicks in two months or so. I rarely too full dose but had excellent gains. My spine went from severe (-3.7) to borderline (-2.5).
For a score of -3.4 it isn't really complicated. There are three choices that build bone with quality: Forteo and Tymlos are similar drugs and work through the parathyroid. Evenity is the third choice and works fast. It inhibits sclerostin and is a bone builder for the first half. Like Fosamax etc. it is anti-resorptive for the second half.
In my experience Tymlos lost its bone building strength by 18 months. I maintained on it for another 6 months. I then did 4 months Evenity. After any of these three, many of us will do Reclast or Fosamax to "lock in gains." Some go on Prolia but there is a rebound if that is stopped and you would need Reclast.
@gently has the idea of doing a weaker bishosphonate because once a bisphosphonate is used, the three bone building drugs are less effective so she is trying to minimize that effect. My doctors want me on a stronger bisphosphonate to better "lock in" gains. As with everything in osteoporosis, these are contradictory ideas and we need research.
But worry about that later! Forteo, Tymlos or Evenity! I chose Tymlos followed by Evenity.
I would only suggest that these are ideas that are complimentary rather than contradictory. There is not scientific dispute that zolendronate persists in bone longer than risidronate. Personalized medicine indicates that because our situations differ, the most appropriate treatment also differs.
Cheers for your positive response to Reclast
@gently I have not seen the idea about using risedronate anywhere and will ask my doctor. Can you share a source? It seems to be a matter of priority: locking in gains from Tymlos is my priority, but in looking ahead I certainly hope to do Tymlos or Forteo again if needed. So in a way I do see these two routes as contradictory. Your idea makes me nervous! Would like to see any studies before I do another 20% Reclast dose.
@gently
Thank you for the information on taking Forteo and Tymlos. I will definitely let my husband know once he starts on the Forteo (still waiting for his doctor's approval, she's waiting on some lab results.) We love blue corn chips so I'll get him some and make sure he's drinking plenty of water. Thanks again!!
@gently
Thanks for your response about Forteo. I didn't realize a person could take this for life, with breaks in-between.
Can you explain why your decision to go with risidronate? Is risidronate similar to Fosamax? I had concerns about Fosamax due to the possible issue with the esophagus.
I would love to hear if you see gains in the next dxa from using the Forteo. I hope you see some very positive results. How long have you been on it and how long can a person be on it before switching to another drug? I'd not heard about being able to transition back to Forteo after using another drug for two weeks. This is all new to me. LOL
Best of luck to you too!
isabelle, I appreciate you kind wishes for my bones. I could be in the small % for whom Forteo is a bust or I may have been too stingy with calcium intake.
The idea of taking Forteo long term is new to everyone. Breaks from Forteo are almost completely untried. Protocol remains two years and then a bisphosphonate. The endocrinologist prescribing for me might not prescribe a third year and seems rather hard set on Reclast after. He is willing to represcribe Forteo after two years of Reclast.
The Reclast expert has suggested risidronate because it is the least durable. The bisphosphonates prevent bone remodeling by cladding tightly to bone. Neither osteoclasts not osteoblasts can reach the bone covered by bisphonate.
Risidronate is similar to aledronate (Fosamax) with same esophageal hazards.
I was off Forteo for a month and liked the drop in CTX. An increase in osteoclasts (reflected in increased CTX)
in relation to osteoblasts is why Forteo ceases to be effective for gain in BMD.
Theoretically breaks without medication should be effective.
I have been on Forteo for over a year.
windyshores is the astute poster. She has multiple other qualities as well.
@gently
Thanks! I had a feeling you were talking about @windyshores. Lol
@isabelle7 the two year limit on Forteo was lifted fairly recently, in September 2021. https://www.ccjm.org/content/88/9/489
Using it for more than two years is still relatively uncharted territory. The effectiveness of Forteo and Tymlos wanes after a year or year and a half for many of us, hence the need for a break.
I have also seen discussion of using Evenity between courses of bisphosphonates or even other drugs.
We need research and we need time, because so much is relatively new in the field. Sadly there is nothing else on the horizon for now so it is all about "combinations and sequencing" (see Dr. Ben Leder's YouTube video of that title).