I took Reclast last January and had severe belly cramps, headaches,
I would like to know if anyone has taken Reclast. I’m due for another Reclast infusion and refuse to take it. My bone density in my spine is -3.3 and I realize that I need some help. I was on Prolia for 10 years and did well but then I was told that one needs to be off it after 10 years. An appointment with my endo is coming up. Advice?
I exercise and stretch and walk daily.
Any advice re exercises and meds for osteoporosis?
Thanks,
Shirley
Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
We cannot give advice here but it is generally known that Reclast is needed to stop the dramatic rebound (bone density loss and increase in fracture risk) when Prolia is stopped. It is surprising that your bone density in your spine is still -3.3 after 10 years of Prolia.
I hope you can talk to your doctor about doing bone marker tests to see if Reclast is managing rebound and how many more Reclasts are needed. You could ask about Evenity as a follow-up. Keith McCormick, author of "Great Bones," is another resource and does consultations. His website is Osteonaturals.
Shrinkette,
Several things happen after taking Prolia as a result of Prolia's method of bone preservation. Prolia prevents the acid producing cells that breakdown bone from developing. It doesn't destroy those cells but preserves and collects them at the last stage of development.
When you stop taking Prolia all those cells mature and are released in your bones in a great acid bath. Multiple compression fractures, called cascade fractures in the spine are seen in cases where a preventive medication is not taken.
Reclast is the most effective of any medication available at causing those acid producing cells to die. Even Reclast is sometimes inadequate at stopping fractures caused by Prolia.
You would get less protection from the non-injectible bisphosphonates. But you do have lingering protection from the Reclast injection.
I haven't taken Reclast or Prolia. Windyshores has the best suggestion about a lower, slower dosing to reduce
poisenous side effects.
You aren't in a usual position of trying to build bone density. You have been placed in a vulnerable position by the use of Prolia.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9081316/
I had a Reclast infusion almost 3 weeks ago and it wreaked havoc with my digestive system. I am still trying to recover and it’s horrific. Colitis and esophagitis. I’ve lost so much weight and at times feel hopeless. I’m telling you this because maybe where you had some stomach issues before they can give it to you in smaller doses, instead of overwhelming your system
@annar I have posted elsewhere that my doctors said that a 2mg dose is not uncommon. Full dose Relcast is 5mg annually. I was doing 1 mg at the doctor's suggestion, but every three months- due to afib and kidney disease. I had a CTX done a few weeks ago and the doctor said my bone turnover was suppressed sufficiently at that time so I have not yet had my 3rd infusion. My 1st and 2nd were June and Sept.
The first weeks of the first infusion can be an "actue phase reaction." I had a fever and fluish symptoms and some GI stuff. It did not happen the second time and I have read it is most likely the first time. I hope, for you, that this is an acute reaction that happens a lot, and not a longer term side effect!
Is it normal for this side effect to last 2/3 weeks or so?
@annar yes the acute phase reaction can apparently be days to weeks. The APR is usually a few days. Mine was 10, and fever for 7 days. I have read about 3 weeks. GI effects are listed as part of an APR. Again I hope this is true for you since the APR ends! (I also wonder if GI effect could persist a bit after the acute phase reaction is over-???Your doctor might know.)
Interestingly, I just found this on the NIH site about study done on Japan:
"Patients with APRs showed significantly higher increases in total hip BMD at 6 and 12 months and larger reductions in BTMs vs patients without APRs. "
Forgive my ignorance But is that the upside of the APR?
Has anyone taken Evenity for the full 12 months??
@annar I just happened upon that study that showed, yes, an upside for those having an acute phase reaction.
Let us know if you get better!
Thank you.