Non responsive to Evenity

To clarify, you were on Tymlos first, followed by Actonel for six weeks?

How long was it before you started Evenity after the Actonel?

Bisphosphonates can blunt the effect of anabolics like Evenity. However, it doesn't seem like six weeks of Actonel could have such a dramatic effect but I guess it's possible.

Do you have a baseline for your bone markers before starting any treatment?

I'm sorry you didn't have a good result with Evenity.

Thank you.
Yes I was on tymlos for 22 months - then actonel six weeks . I stopped Actonel 1 month before starting Evenity. Actonel stays in the system 2 months. I had a tremendous response to actonel - my CTX dropped to 81 ( from 500 range) and P1Np dropped to 18 ( from 70 range) So it worked too fast and casued servere inflammation.

No baseline BTM unfortunately. On tymlos my markers were average P1Np 70-90 and CTX 475-530. I built good bone in spine but negatively effect my feet. Too strong CTX energy.

I wish I had been warned that Evenity is non repsonsive in some patinets - particulaity if the p1Np is very low in the beginning. Theres a good article on that 2024 ( non repsonse to evenity). But thats only one perspective. I am hoping others have some comment for me. Sending postive energy

Thank you, that is great information. I get my follow up DEXA next week after six months of Tymlos/Forteo followed by a year of Evenity. I am not quite sure what to expect because I was on Fosamax for over five years and only came off that medication two years ago this month. It will be interesting to see if these anabolics made any difference.

I was non-responsive to Fosamax and it stopped working after a couple of years. I even had a fracture while taking it. My doctor was clueless and I didn't have adequate care until I started seeing an endocrinologist last May (at my insistence - I had to go find one).

I also learned that I have an underlying condition that contributes to osteoporosis (hypercalciuria) so I also wonder if that will have reduced Evenity's effect. Will know more in about 10 days after the DEXA report comes back.

SOund slike you have had a long journey. Bisphosphantes prior to anabolics are known to blunt the effect of the anabolic; but there still should be some progress. I hope you have been doing Bone markers ( blood tests) throughout your treatment in order to have a gage of how well the medicinces are working. If you are new to bone markers ask your endo.- or start reading to educate yourself. I recommend Great BOnes by Dr K McCormick. Its a fabuous reference ( can be detailed but stick with it) Get good care and be a good advocate for yourself.

My endo is tracking my CTX. It will be measured again at the end of this month. It was around 350 before starting Evenity. She doesn't track P1NP.

I have read Dr. McCormick's book and agree that it's a great resource.

@dmshope I’m curious, did you happen to have any bone marker (BTM) labs done between months 1 and 10 of your Evenity treatment? As we know, typically the BTM response is greatest during the first 3mo of Evenity in treatment-naive patients; month 11 is usually the tail end of that response (trending toward baseline). Since you had prior 22-month Tymlos treatment followed by risedronate, the peak time for your bone marker response with evenity might have shifted or been blunted.

Anabolic to anabolic sequencing is fairly new in practice, but we do hear it discussed on this forum from time to time. There is a retrospective study regarding the transition from a PTH analog (teriparatide) to Evenity, which indicated that prior treatment with a PTH analog has some blunting effect on Evenity’s typical bmd gains: https://ir.library.osaka-u.ac.jp/repo/ouka/all/100397/Bone_193_117389.pdf

In your case, the use of risedronate, even for a very short period, may have played a role overall as well, as it clearly suppressed your bone turnover significantly (CTX 81, p1np 18) right before the start of evenity.

Here is a review paper on the 'waning" effect of anabolic therapy: https://academic.oup.com/jbmr/advance-article/doi/10.1093/jbmr/zjag053/8526235 . My endo also at one point discussed prolonged anabolic treatment with me, saying that sometimes bone formation could have maxed out after an anabolic course, which seems to align with what you're seeing, though there are several factors at play in your case.

@mayblin
Thank you so very much for your insight and the articles - which provide new information for us. an dpossible stragites for future
At the end of six week actonel
CTX- 81
P1NP -18
3 month on Evenity
CTX-135
P1NP- 28
6 Month on Evenity
CTX =224
P1NP-25
9-10 month on Evenity
CTX-315
P1Np -35

1 year Dexa at month 11 Eventiy ( after 22 months tymlos/six weeks actonel) showed no changes
Spine - 2.2 , -hip 3.7,, forearm -4.9
Gains in spine were all on tymlos.
Due to severe numbers in hip, this may warrnat a need an anabolic in the future so am looking at Evista as a follow up medication ( evista will not blunt a future anabolic)

In my case it appears I was not responsive to the Evenity on the Dexa, but clinicslly I know my feet are stronger than at the end of tymlos. SO something good has happened.

Sendingpostive energy to find our paths with grace and hope.

@oopsiedaisy

I think we’ve “spoken” about hypercalciuria in previous posts. In reviewing my lab tests from about 10 years ago, I noted that my urine calcium was also very high. My doc did nothing, even though she was seemingly very curious about “why I have OP” - she tested for bone cancers, marrow disorders, Sjogrens . . . How disappointing that I might have had 10 years of treatment for hypocalciuria and perhaps avoided some of the extra special problems and medications to which I’ve been subjected.

Fast forward to January, 2026. My new rheumatologist had my urine calcium tested and the number was very high; like my eyeballs about popped out high! At that time, he prescribed Chlorthalidone. The only problem I’ve had with this med is my normally low blood pressure is even lower which is still giving me some slight issues. I also remarked that it’s a miracle that I haven’t had any kidney stones! Good or bad - time will tell. From what I’ve read, this is a rather uncommon treatment, even though many people who have OP have hypercalciuria.

I asked the doc when I might expect to see any kind of reaction to the Chlorthalidone. His reply was that it’s not a cure-all, but rather another tool in the toolkit and OP meds might/will still be necessary in the future. For now, I’ll do another round of Reclast in July and cross my fingers. Additionally, the doc gave me a crash course on how much calcium was necessary and how much of that calcium comes from food and another supplements. Although we are always told to take our calcium and vitamin D, sometimes more isn’t always better.

Enjoy the Spring Equinox! I hope you have sunshine wherever you are!

Cheers!

@beanieone That's concerning that your doctor never followed up on your high urine calcium ten years ago. Ten years is a long time for your bone density to decline.

My endocrinologist started me on a low dose of hydrochlorothiazide, which I've been taking for a couple of weeks now. I haven't had any side effects to date and have even lost a pound of water weight. I'll have another 24-hour urine calcium done at the end of May.

Next week I have a renal ultrasound to check for stones scheduled the same day as my DEXA. I'm also thankful that I've never had a kidney stone. I cared for quite a few people in my job as an ER nurse who came in with them, suffering from terrible pain.

I've also read that treatment for hypercalciuria is just another part of the overall plan for osteoporosis but I'm hopeful it might help.

I've also cut way back on my sodium intake and increased my water consumption as I've read that's important. Guess my body just loves to keep the sodium and discard the calcium.

It's a beautiful day here and yes, the sun is out. Hope you have the same.

@beanieone
My high urine cal was due to 2 causes:
1) oversupplementation of Vit D and also not taking K with D
2) water from a house water softener. I drank cooked and bathed in water that was softener with salt. Water softeners leach minerals out of the water.... my water was leaching calcium out of my bones. A very astute nurse picked that up..... I am health food conscious and when she asked me if I had a high salt diet, I nealry laughed.... until I thought how much I expose myslef to salt daily.
I hope you find the best suport for your situation - suppor tthat brings healing and strenght. God bless you