Support For Those Quitting Prolia

I went on Prolia 4 years ago. I, too, had mild osteoarthritis in my knees, but it was about 6 months later that I had serious, almost crippling issues with them. What worked for me was taking collagen supplements. I started with gummies, went to powder and am currently taking capsules. They all were miraculous for me; I chose the capsules simply for convenience. A few months ago I started having some serious jaw pain, and worried it was the Prolia causing damage. X-rays showed everything was fine, and my dentist said the jaw has a muscle which can decline with age. It took another month for me to remember that I had recently cut my collagen dose in half. After increasing it back to what I had previously taken, the jaw pain disappeared. I turn 70 next week.

Thank you for this— I appreciate you sharing. I will try taking collagen…🫶🏻

@bonana if your bone loss was "drastic" any reason you are not taking Forteo,. Tymlos or Evenity? Do you have an endocrinologist?

What type of collagen- brand, dosage, vendor . Does it have Fortibone in it? Thanks.

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If your osteoclasts have not started increasing after Prolia cessation, it seems most logical to wait until that happens before starting Reclast.

I say logical not just because high/rising CTX numbers appear to be associated with the Prolia 'rebound' affect. But also for the reason given by McCormick that you DO need a certain level of osteoclast activity (he likes a CTX greater than 100) to prepare a good foundation for the osteoblastic bone-building activity.....so that you are building strong bones, not just dense bones.

I am always scratching my head about the number of fractures that are reported to occur in the osteopenia range of BMD scores. Bone density and bone strength do not appear to be equivalent.

Here, however, you are searching for numbers that would indicate when Reclast is appropriate. Has your endo suggested any such CTX number or is s/he saying Reclast is simply required 6 months after the last Prolia injection?

McCormick would seem to be happy with a CTX score between 100-375, Great Bones at p. 144, so I would think anything above 375 is when I might consider Reclast. But then, I do not like taking meds unless absolutely necessary.

A number of folks who post here on Connect do not think there is a 'too low' CTX number, which may mean the CTX number is not relevant for determining timing of Reclast. But I am not in that camp (because I think strong bones are more important than dense bones to reduce fracture risk) and would wait for a test showing increased CTX numbers.

If your bond-building marker (P1NP) is also low (McCormick thinks low is less than 30) then I would look for secondary causes of bone loss and try to figure out a way to increase that number.

I suspect there is an important, perhaps even critical, relationship between osteoclast activity and osteoblast activity for producing strong (not just dense) bones but have no idea what that might be or what a BMT results ratio might look like.

Hello @windyshores — I do have an Endocrinologist. She suggested Reclast infusion and didn’t offer options. After I had the osteoarthritis problems, I don’t want to take anymore pharma meds. Based on what I have read on this forum shots and pills appear to have a lot of side effects as well, which affected our quality of life. Searched and found Light PhotoTherapy…, a more natural approach. ☺️

@bonana caan you explain the light phototherapy? Is that for your osteoarthritis?

Again if you have serious osteoporosis, I would have expected your endocrinologist to suggest a bone building drug like Forteo, Tymlos or Evenity. Is it possible to get a second opinion?

I try to remember that people with side effects are more likely to post. I have sensitivities to many meds but managed to do Tymlos by starting at a low dose and moving up. This titration helped mitigate side effects for me.

I know that Reclast has caused you a lot of pain. On the other hand, I have fractures and that pain and disability is permanent for me. So I tend to encourage trying meds to avoid fractures. If your DEXA is better than -3.0 or so, then providers like McCormick do suggest a natural approach first.

@windyshores —

Our bodies emit our very own infrared light. And the light therapy I’m using helps regenerate/trigger the activation of my dormant stem cells. Been using it for 8 weeks now and drastically reduced the pain without taking anti-inflammatory meds. At this point, I will do what it takes to heal Hollistically and naturally. I’m tired of the aches and pains that meds create more problems. Here’s a link that explain the process better— https://youtu.be/5ILceEUBNQY

If want to know more… just let me know.
Working with a Functional Medicine Practitioner also as I need to understand my own body chemistry to look for root causes. She really helped a lot as well. Had some tests done and my cortisol is low — which explains why chronic inflammation among other things. My gut has lost its integrity to process nutrients, etc. I’m sugar and carbohydrate intolerant as well… our body’s system is so complex and one malfunction triggers a domino effect. ‘big sigh’… thank you for listening everyone🫶🏻

Margaret Martin and the MelioGuide just sent an email about how to stop Prolia safely