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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@awfultruth I have not heard of any doctors suggesting an early stop to Evenity.
We need to wait for more studies.
@mayblin Thanks for your interest. I have a baseline and a two months marker tests. Doctor did not think any needed after the two months test results. Not sure if that's right but I didn't fight about that one.
At 2 months after my first shot my P1NP almost doubled and my CTX went down by 68%. So that little snippet of data looks good.
Started Evenity 10/16/23 (no prior meds)
CTX 9/22/23 763
CTX 12/18/23 268
P1NP 9/22/23 69
P1NP 12/18/23 130
Note that my previous bone markers were not as high as my baseline markers above. I mean 763 for CTX and 69 for P1NP are both high numbers when not taking any meds. Prior to that my CTX had been in the 200's and then jumped to 400's and then to that number above (763). My P1NP had previously varied between 33 and 50 usually around 40. Maybe I had a silent fracture in the months before starting Evenity? Maybe these two markers jump around like that without medications? My doctor did not comment on the increase in both markers except to say the increase after my Evenity shots was a good sign.
@windyshores I agree. I don't think I've heard of any doctors suggesting an early stop. I do hear speculation about it on forums and that one instance of a nurse suggesting it. I think though that many of us wonder about stopping Evenity short given the oft repeated statement that after x number of months it's no longer building bone or no longer anabolic.
As I said I didn't stop but I did spend time worrying if I should.
@awfultruth as I wrote, my doctor, whom I respect, says they really don't understand how Evenity works. Obviously it inhibits sclerostin but the body's response is still a mystery. It seems to continue to build bone.
My doctor also says that an entire conference could be held on the issue of bone marker blood testing. He does not do them and said they don't give a complete enough picture of what is happening.
I think this forum is great for sharing our experiences. I am hoping that some of these uncertainties, some of which are not yet resolvable, can be helped by people getting an endocrinologist they trust.
I have been speculating and theorizing myself and am going to try to stick to my experiences, period.
Just want to add that this is a long term game for us. Bone building on Evenity may be less in the second half, but it is not zero for that time and in the context of long term medications, those 6 months are valuable. What is the alternative? If studies show Reclast does more for those 6 months, our doctors will know, but that is not known at this time.
Dr. Ben Leder, in his YouTube video, says that for a time, Evenity both raises P1NP and lowers CTX. Forteo and Tymlos raise both. Prolia and bisphosphonates lower both. Leder discusses using a combo of Forteo and Prolia and says that Evenity is the only single drug that has the same effect as that combo, in raising P1NP and lowering CTX- in the first half.
Evenity is the newest of the drugs. Read the FDA warnings.
Thank you! This has to be one of the most difficult decisions to wrap my head around! As you point out, the lack of concrete studies and guidelines is frustrating. No wonder so many Dr's get it wrong when prescribing meds for their OP patients.
I do like your drug sequence suggestion. And the lower dose sounds like a good option.
My other thought would be what if I could not tolerate the Reclast at all? See, I'm already going there, haha. We just don't know and that goes back to the lack of studies. It's such a black hole.
@elizabeth007 it is helpful to read the actual studies. The warning sare about cardiovascular risks with Evenity. One study found no difference between Evenity and placebo in that regard and another study showed a small difference with alendronate, which some articles say may have been due to a small protective factor of alendrontate, according to the studies (ARCH and FRAME). There are other possible effects of Evenity that have not been studied as thoroughly. As always talk to a doctor about personal risks with any medication.
@255anny I take it that our responses are helping you - excellent. Many of us are going thru similar worries and fears. I'm certainly worrying about my choices including your "what if I cannot tolerate Reclast" thought.
One thing I do not understand is that the huge difference in side effects between studies and the real world experiences we are seeing on this and other forums. I would love to hear others ideas about this. But, as @windyshores points out there are many good studies out there that provide a lot of information to help in these decisions. Not everything we wish we knew is there but as she says reading the actual studies can be helpful. Sometimes things get confused getting the info second, third, and 1000th hand. Reading osteoporosis studies and evaluating my options is not what I expected to be doing in my retirement but it does provide a lot of "brain exercise" and keep me "engaged".
Thank you very much @awfultruth for sharing your treatment experiences. Your bone markers looked great at 2mo Evenity - Dexa will confirm that - keep fingers crossed.
Your serial baseline btms were puzzling indeed. Something might have happened to have an impact. What made you doing the multiple baseline? You were way ahead of the game! I wish I had a baseline done before my treatment.