High anxiety regarding Reclast or Prolia decison for OP meds

Posted by 255anny @255anny, Aug 18 5:01pm

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.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@awfultruth

@mayblin Those charts are so confusing to me - I don't understand the legend or the transitions to the second year.
I can follow the first year of Evenity though. After 6 months both lumbar spine and total hip density improvement is slightly less than half of the improvement for the first 6 months. But still, as I say that additional improvement is worthwhile.
The one thing I see that I'd never paid attention to before is that the CTX marker goes down quite a bit and immediately. So perhaps it's functioning as an anti-resorptive strongly also in those first 6 months. Maybe it's not simply anabolic 6 months, anti-resorptive the next 6 months. Maybe it's a more complicated picture starting at the very beginning.
Not sure that what I'm saying here makes any difference except that perhaps it supports continuing to do Evenity past the first few months of greatest increase.

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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.

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@mayblin

@awfultruth i think you made a good call. I will do the same if i need a big bmd boost to reduce frax risk. Trial results clearly showed there are further bmd increase during 7-12 months of evenity treatment, by a good margin. The numbers in bmd increase vary depending on which paper you are reading, but generally greater than 3% - a margin many studies deem as "significant". Unless, you have a way to relay to an antiresorptive then back to evenity and show more advantage over a straight 12mo treatment. So far no studies showed that yet.

Did you have your bone markers monitored during evenity treatment?

We had a discussion a few days ago re if it's oversimplified to say first few months are anabolic (btms are saying otherwise) and last half (maybe?) is antiresorptive during 12mo evenity treatment.

I will try to attach the actual graph of bmd changes for 24mo evenity later. The link was in an earlier reply.

Could you keep us posted re your dexa results at the completion of evenity? Thanks!

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@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.

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@windyshores

@awfultruth I have not heard of any doctors suggesting an early stop to Evenity.

We need to wait for more studies.

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@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.

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@awfultruth

@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.

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@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.

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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.

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@windyshores

@25anny how long you would take Reclast after Evenity depends on your DEXA and your bone markers. My docs expect me to do it for three years but I doubt I will. The limit is 5 years, not sure if that is for a lifetime or one course. Most people are able to take a drug holiday. Some docs do it every 2 years.

There is no data, according to my doctors, on Evenity after Forteo or Tymlos, let alone on the other way around. I was originally told, I think in a masterclass on osteoporosis, that you could do Tymlos or Forteo first but not Evenity, possibly because Evenity "turbocharges" growth (I remember that word being used) so there is less for the other meds to do. But Evenity came out in 2019, that was early 2021, so I don't know what has come out since. My doctors are very "evidence-based" and are waiting for studies so Reclast is all they discuss right now. I am going to bring up doing more anabolics.

I don't think there are any definite answers right now. It's helpful that we all research (and share it) but in practice the choice right now are limited: seems to be Prolia or Reclast after Evenity and if Prolia is done, many people are doing one year and then doing Reclast. Even that latter strategy is relatively new, at least for me. I am doing lower dose Reclast more often so am in your same position of wondering what to do next.

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Evenity is the newest of the drugs. Read the FDA warnings.

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@awfultruth

@255anny I think you are doing great with your reasoning. As you know the problem is there are not enough studies asking the right questions for our reasoning to be foolproof. I'm agonizing over a similar situation myself.
My suggestion would be Evenity - Reclast - Evenity - Reclast. Basing your use of Reclast on bone markers (and DXA results), not on the "just doing a yearly dose method". As I said previously I see inserting Prolia into the mix bringing in a lot of uncertainty and worry for only a slightly increased bone gain.
There are certainly real risks with Reclast too but multiple fracturing is not one of them. I would consider the lower dose route with Reclast which would theoretically reduce the risk and impact of Reclast side effects. I'm probably going to be discussing (arguing?) about this with my doctor this week.
See my post on studies showing lower dosing with Reclast works well:
https://connect.mayoclinic.org/discussion/reclast-iv-half-dosage/?pg=2#comment-1127778

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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.

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@elisabeth007

Evenity is the newest of the drugs. Read the FDA warnings.

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@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.

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@255anny

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.

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@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".

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@awfultruth

@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.

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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.

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