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High anxiety regarding Reclast or Prolia decison for OP meds
I am overwhelmed with making this decision. Currently on Evenity, 2 more injections left. Severe Osteporosis. Spine -4.7. I left my OP Dr's office last week with an order for Prolia starting Oct/Nov. And blood work orders. We did discuss Prolia vs Reclast but I didn't ask enough questions I guess, despite having a 1 hour appt with her. I did know and told her I feared Prolia. She relayed how much easier it was than Reclast. And the Reclast stays in your system much longer. She wrote the RX for Prolia for 1 year, then relay to Evenity again. That does not sound right to me. I can't find any studies supporting that drug sequencing. This Dr is new to me but in the practice of the most respected Endo offices in my state. She only see OP patients. I am staying up til 3am every night reading and researching. There is no right answer.
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Back surgery is what I fear due to my low bone density. My back hurts 24/7. Getting x-rays and MRI next month. I just want an answer why it hurts so much. I hope you can find a Osteoporosis specialist that can guide you in the right direction. These drugs are quite expensive. I had to pay thousands of dollars for Forteo before my Medicare kicked in. Horrible!
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Hug
1 Reaction@cobalt can you do Reclast? Generally we have been told to do a bisphosphonate to deal with Prolia rebound but there was some info on one thread here that Evenity helped maintain and even grow bone a small amout (2.3% as I remember) after Prolia. That was a study that may not yet be in practice but if you have no alternatives, maybe your doctor would try it, I have read ("Great Bones") and been told (doctors, and Ben Leder's video on YouTube on Combining and Sequencing Approaches) that Forteo and Tymlos are not good choices after Prolia. So what's left? If you cannot take bisphosphonates, then Evenity is the only one left. (That may have been one small study, so ask your doctor...the link is on this thread https://connect.mayoclinic.org/discussion/high-anxiety-regarding-reclast-or-prolia-decison-for-op-meds/?pg=2#comment-1126992)
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Hug
1 ReactionThis paper is the study in McClung paper Fig1, line5, or reference article #17. The abstract is saying when comparing
A group: 2yr evenity --> 1 year placebo --> 1 year evenity with:
B group: 2yr evenity --> 1yr prolia -->1yr evenity
The A group second round of evenity (1yr) got bmd increase as usual (lumbar ~12%; fn and hip 5-6%) , but the B group second 1 yr evenity bmd had only 2.3% increase at lumbar and no change in hip or fn, most likely due to prolia's effect. It will be interesting to read the full paper to see what is the end results for the entire sequence A or B, because you would expect some bmd increase with prolia as a relay but lose some bmd with relay of nothing (placebo).
There was a study arm for no evenity for the first 24months, but we don't need to look at that part for your purpose.
Your TBS are not that bad, TBS 1.32 is roughly lower boundary of normal range. However, your frax score is very high. Maybe this is why your endo has another round of evenity in mind for you.
Today @awfultruth discussed dosing of reclast:
https://connect.mayoclinic.org/comment/1126775/
I wonder if you could present the paper to your endo and ask a half dose 2.5mg of reclast for 6 month and go from there, and ask endo how reclast will effect future evenity. I thought @windyshores mentioned at one point that a trial is on going for evenity -> reclast -> evenity. You never know, we might see results soon. There might be case reports that your endo knows about too.
Can you link that paper again?
Currently, Evenity is only approved for 1 year. So this paper is just a study (and wishful thinking) and not used by Dr's in the real world. Am I right in that thinking? My brain is fried trying to make a decision between the Reclast route or do the 2 doses of Prolia followed by Evenity. I'm sure I need to get this decision to my Dr asap. She has no clue I'm doubting her instructions, I don't want to be "that patient" haha. And I'll need insurance approval, so I need to make this decision asap.
"In participants who received a second course of romosozumab following placebo, large BMD gains resulted at the lumbar spine, total hip, and femoral neck." https://link.springer.com/article/10.1007/s00198-019-05146-9
Interesting article by way of @255anny.
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Hug
1 Reaction@gently I saw that after I posted! I am seriously wondering if I should stop at 1mg Reclast and go back to an anabolic for awhile. The protocol seems to lag way behind the research.
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Hug
1 ReactionMcClung paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8260819/#jbm410512-bib-0014
Kendler's paper: https://link.springer.com/article/10.1007/s00198-019-05146-9 , which is reference #17 mentioned in McClung's. This is the one that details basic results in the abstract.
The studies in the papers did use evenity for 2 years for the first leg. Then they went on with either 1yr prolia or 1 yr placebo as relay, then final leg being another year of evenity. I think the key is to know if your endo indeed intends to treat you with another round of evenity. Evenity is approved for 1 year for clinical use, but second round could be done with prior authorization for medical necessity, if the doc is familiar with repeated use. Certainly your insurance can be a wild card.
If no more evenity in the near future (after 1 year of relay drug ), then your decision is a lot easier. If yes, then your reading about the relay drug (prolia vs reclast) after this round of evenity can be useful when you discussed with your endo. Do ask if s/he had used same/similar sequence or knows any clinical cases or trials/publications, and what were the outcome.
Wish you the very best!
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Hug
2 Reactions@mayblin so Evenity takes care of rebound after 1 year Prolia?
With the sequence Evenity-Prolia- Evenity , is Reclast used afterwards?
I am still nervous that Evenity has not been adequately researched or tried out on the market. I am satisfied about cardiovascular risks, which were well-researched and don't seem concerning despite the warning. But bone marrow inflammation and effects on B cell acquired immunity have not been well-studied, not to mention the long term effects on joints.
Basically we do best if we do anabolic first. Yup. Andy maybe it is better to take a break after Tymlos or Evenity if doing a second course, without locking in with Reclast, Fosamax or doing Prolia.
It is my understanding that Evenity has a small amount of antiresorptive qualities. But don't quote me on that. But the big question is - is that antiresorptive enough to hold off the rebound effect from the Prolia?
I am finishing up Evenity now, 2 more injections. No issues at all.
I'm considering Reclast next.
My drug sequence has been - Forteo > Evenity, and now either Reclast or Prolia
regarding the long term effects of Evenity, I just don't know.
I'm confused now. We know that you had Forteo (done), then Evenity (now and 2 more months left). We are discussing the next realy drug (prolia vs reclast) then a proposed second round of Evenity by your endo. Yes, no?
If the second round of evenity is not in the picture, a decision between reclast vs prolia is a lot less complicated now I suppose.