My journey on Osteoporosis meds and now back issues ...

Posted by 255anny @255anny, Feb 7 10:56am

Hi all. First I want to say I have great respect for everyone who posts here. It helps so much and often cuts the "noise" when we are searching for some guidance or just a little handholding.
This past week I resumed my Evenity injections for the 2nd time. My medication history is Forteo, 2 yrs, then Evenity 12 mos and Reclast.
I refused Prolia and my Dr suggested Evenity again. I had no gains on Forteo. I suspect the ongoing gut isuues I was dealing with blocked most nutrients I was consuming. I had some gains with Evenity, not a lot but happy for any! Then the Reclast to lock it all in. My last scan showed some improvement but I'm still in very severe OP. So now we are back to resuming the Evenity. Fingers crossed. I had zero side effects or reactions to my past Evenity injections. But this week after my 1st Evenity, has been hell for me. I am aching all over and my Sciatica is off the chart. From the tiny bit of knowledge I've been able to understand, it seems I may have a nerve compression that is causing the pain. So my first instinct was to locate a top Neuro Dr to consult with. Well, after reading his site, I realize even if I ended up having to have some type of surgical intervention, my severe OP might prevent that from happening. Anyone else deal with this issue? Thanks all!

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

Profile picture for Maryann @mkoch

2555anny: I have osteoporosis as well. (And diagnosed with celiac disease in 2009 which explains why I was diagnosed with osteopenia way back in my late 30s-told at that time to just load up on calcium tablets and vit.d)
All these drug options weren't available at that time. I also struggle with on-going back pain and sciatica. I see a physiatrist, a doctor who treats pain involving the joints, muscles, nerves, bones, etc. A physiatrist offers non-surgical interventions. I had severe sciatic pain down my right leg caused by a compressed nerve and the physiatrist, under ultrasound guided imagery, injected steroids in the lumbar locations he suspected my pain was initiated from based on my symptoms and an MRI report. Whether a doctor recommends surgery or not I would try a non-surgical route first to see if you can get any relief that way.

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@mkoch you have to wonder how many of us went years with celiac or NCGI and were getting very little nutrients. In some European countries they routinely test children (one reason so much easier to eat GF in places like Italy).

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After years of suffering severe and chronic neck and back pain, in December 2025 I had a C5 C6 neck fusion. After the surgery the surgeon said "your bones are soft." I also need a lumbar fusion. I have a compressed L5 nerve and L5 slipped disc. Because of my "soft bones" the surgeon ordered a DXA scan which I completed a week ago and found out I have Osteoporosis. The surgeon is concerned about the success of the lumbar fusion and told me if I was on Prolia, Forteo or Tymlos, for 3 months before the surgery, it would make all the difference in the surgery being successful. My sister had a severe allergic reaction to Prolia, plus, my insurance company will no longer pay for Prolia and my Endocrinologist did not recommend Prolia. So, I have ruled out that drug. I ran across this Mayo Clinic discussion board while researching Forteo and Tymlos. I don't know if my insurance will cover these drugs yet. I am now waiting. After reading this discussion I need to research Evenity.

Having personally experienced, and are still experiencing, nerve compression I would tell you to not hesitate to ask your doctor for an MRI. I believe it's best to have answers and knowledge so you can decide what your options are and how to proceed.

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Profile picture for eileenvan @eileenvan

Exactly the same for me. No surgical repair of fractures in the spine because our bones are too soft. The surgery will fail. I have had 4 vertebral fractures in the last year.
I move the wrong way and I get a fracture. I’m sticking with Tymlos bc Evenity has a 30% heart failure risk. I’m in my 5 th month. I dread the injection every night. It makes my heart pound, dizzy, headache . But I feel stronger, so will continue. Warm wishes

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@eileenvan have you considered getting fit for a custom back brace? I have a corset type brace that doesn't let move in the wrong direction. I wrap the brace around me as tight as I can and then on each side there is a knob, the knobs turn in opposite directions until I feel secure in the brace: the corset effect. I actually feel good in the corset, but my movement is seriously limited. It's spendy and pre-approval was required for me.

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I too have osteoporosis, disc disease, scoliosis. I found neurosurgeon that specializes scoliosis and disc diseasse for kids and adult. Dr. B said he could do surgery but not until I have at least 3 rounds of Evenity my 8th round has to be rescheduled because I am having the first of 3 surgeries on Thursday. I have the utmost respect in Dr. B. told me that I won't be perfectly but I will be feeling better.

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Profile picture for ryj @ryj

After years of suffering severe and chronic neck and back pain, in December 2025 I had a C5 C6 neck fusion. After the surgery the surgeon said "your bones are soft." I also need a lumbar fusion. I have a compressed L5 nerve and L5 slipped disc. Because of my "soft bones" the surgeon ordered a DXA scan which I completed a week ago and found out I have Osteoporosis. The surgeon is concerned about the success of the lumbar fusion and told me if I was on Prolia, Forteo or Tymlos, for 3 months before the surgery, it would make all the difference in the surgery being successful. My sister had a severe allergic reaction to Prolia, plus, my insurance company will no longer pay for Prolia and my Endocrinologist did not recommend Prolia. So, I have ruled out that drug. I ran across this Mayo Clinic discussion board while researching Forteo and Tymlos. I don't know if my insurance will cover these drugs yet. I am now waiting. After reading this discussion I need to research Evenity.

Having personally experienced, and are still experiencing, nerve compression I would tell you to not hesitate to ask your doctor for an MRI. I believe it's best to have answers and knowledge so you can decide what your options are and how to proceed.

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@ryj when I started Evenity no prior authorization was required. I have completed 7 rounds with no adverse reaction.

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Profile picture for brokenlady62 @brokenlady62

@eileenvan have you considered getting fit for a custom back brace? I have a corset type brace that doesn't let move in the wrong direction. I wrap the brace around me as tight as I can and then on each side there is a knob, the knobs turn in opposite directions until I feel secure in the brace: the corset effect. I actually feel good in the corset, but my movement is seriously limited. It's spendy and pre-approval was required for me.

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@brokenlady62 I wear this stretchy white wrap like thing that makes me feel a bit secure. Other back braces hurt my spine and ribs. Just recently I noticed my ribs don’t hurt as much when someone hugs me. So I’m giving Tymlos the credit. Thanks for your info. Warm wishes, E

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Profile picture for brokenlady62 @brokenlady62

I too have osteoporosis, disc disease, scoliosis. I found neurosurgeon that specializes scoliosis and disc diseasse for kids and adult. Dr. B said he could do surgery but not until I have at least 3 rounds of Evenity my 8th round has to be rescheduled because I am having the first of 3 surgeries on Thursday. I have the utmost respect in Dr. B. told me that I won't be perfectly but I will be feeling better.

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@brokenlady62 Best of luck.
God bless you, may you have a complete and speedy recovery.
Warm wishes, E

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Profile picture for beanieone @beanieone

Vertebral fractures, when sudden and severe, can be repaired using kyphoplasty, which has some inherent risks. I, too, have had four VF's, but after seeing a spine specialist, I came to understand that these fractures have healed all by themselves. Kyphoplasty must be done a short time post-fracture and before the bones have begun to heal.

Evenity has a 30% higher risk of heart failure, but not a 30% risk of heart failure. I have a few minor issues with my heart (valves) so my rheumatologist prescribed Tymlos first (which I didn't tolerate at all . . . the problems you mentioned, and more). Evenity is not recommended when the patient has had a cardiac event within the year following the administration of the drugs. That said, when Tymlos was no longer a feasible weapon for me, with my cardiologist's blessing, my doc prescribed Evenity. Of course, it is still a personal choice and a doc's recommendation to determine which med is best for your situation.

I'm sorry to hear about your issues, eileenvan, it takes a conscious effort to prevent vertebral fractures and sometimes they just happen without warning or cause.

As an aside, my new rheumatologist told me I have "severe OP" even though my DEXA numbers look pretty good. When he saw my sad face and booboo lip, he clarified the severe classification: Come to find out that anyone who has had a VF is automatically pushed into the severe category. Made me feel better I guess.

Tread safely, friends and sisters, until the weather warms a bit. I think the groundhog was wrong. Cheers!

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@beanieone how to you have a compression fracture with great dexa numbers?

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Unfortunately, dvargo, I had (most of) the fractures pre-Tymlos/Evenity. The first was c. 2017, and my last occurred about the time I started Tymlos in 2022. After meds, my DEXA numbers improved greatly.

And here's a new wrinkle: Due to insurance changes, I have a new rheumatologist, very interested in OP, whom I visited at the end of January. I had an extensive interview with the doc where he imparted a great deal of wisdom about OP. This doc seemed determined to try to find the reason(s) behind why I have OP and I wasn't going to stop him! In his pursuit, he ordered a complete, and I mean complete, blood panel and 24-hour urine test.

My labs all came back normal but my urine test indicates that my kidneys, while they are functioning well, are excreting too much of the wonder-mineral - calcium - which is perhaps the root cause of my osteoporosis. In over 15 years of knowing I have OP, dealing with potentially problematic drugs and, in spite of my constant questioning, this is the first doc that ever cared about the WHY! My previous doc in his famous 5 minutes of "how are you" and 15-minutes of "how he is" pretty much said, "what difference does it make", you have OP.

Additionally, I should report that my CTX and P1NP numbers went wacky beginning in 2025 and subsequent labs showed my numbers were getting worse, much worse . . . like that's impossible, needs intervention worse. The opening salvo was "Prolia" which I have been fighting tooth and nail (thank you @gently). A new doc, new labs, and suddenly my numbers are back in line with the ones taken post-Evenity.

Hopefully, with a newly-prescribed med, my kidneys will stop sending that much-needed calcium into the stratosphere, unused and unsung, and can deposit it to where it will be loved, nurtured, and appreciated.

Sorry for the ramble through the bramble. Wishing everyone sunshine and roses.

Cheers!

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Profile picture for jw9 @jw9

@beachesanddreams
Thanks for your encouragement! It helps. I don't feel like I'm alone making decisions, but gathering ideas to add to what I learn on pharmaceutical sites. And yes to your suggestions, also! Maybe I'm not the only one who needs to get more serious about the weight-bearing exercise...

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@jw9 Stomping too! I’ve seen several videos - and a recent article in AARP said so too - that firm stomping on hard ground is great for bones, much like jumping rope and step exercises.

When I walk my neighborhood, and get to the sidewalk end, I do ten hard stomps on each leg. It’s just something little to add to my workout that might just go a long way.

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