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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 brokenlady62
brokenlady62 | @brokenlady62 | Feb 11 9:19pm
In reply to @beanieone "Unfortunately, dvargo, I had (most of) the fractures pre-Tymlos/Evenity. The first was c. 2017, and my..." + (show)
Profile picture for beanieone @beanieone

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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@beanieone Isn't January like playing with a barrel of monkeys? (insurance changes) one Dr. said this another says that. Do not all your providers see the same test results and shouldn't they have the same answers? I don't understand.

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1 reply
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marjoram2 | @marjoram2 | Feb 12 8:46am
In reply to @brokenlady62 "@eileenvan have you considered getting fit for a custom back brace? I have a corset type..." + (show)
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
What is the name of your brace and is it ok with your doctor/or therapist that you wear the brace? I also do the same because I feel better and can do more--but the pros say I should use my muscles.

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marjoram2 | @marjoram2 | Feb 12 8:48am
In reply to @eileenvan "@brokenlady62 I wear this stretchy white wrap like thing that makes me feel a bit secure...." + (show)
Profile picture for eileenvan @eileenvan

@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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@eileenvan
Could you share the name of the wrap--is it available on Amazon?

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beanieone | @beanieone | Feb 12 9:36am
In reply to @brokenlady62 "@beanieone Isn't January like playing with a barrel of monkeys? (insurance changes) one Dr. said this..." + (show)
Profile picture for brokenlady62 @brokenlady62

@beanieone Isn't January like playing with a barrel of monkeys? (insurance changes) one Dr. said this another says that. Do not all your providers see the same test results and shouldn't they have the same answers? I don't understand.

Jump to this post

@brokenlady62,

Hmmm, at one time I signed a form that (I thought) conveyed permission to combine medical history, docs and records, to a single patient "file" so that any and all medical professionals could see my stats, not only for continuity of care, but also in the event of emergency. Here comes your barrel of monkeys :0 . . . some of my docs can see my care program from the insurance side of the system and others from the hospital/clinic system. Most of the time, I think docs rely on patients (many of whom are old people) to remember what years they had flu shots, and whether or not they had their klagometer surgically removed in 1985. I had a false sense of security until I found out about the systems not being merged.

So, the comeuppance here is that it appears not all of my docs could see all of my test results, but they still should have had some better questions. Why, after 15 years with OP, is a doc trying to get to the root of the equation to determine why? I guess most docs want to order their own labs and procedures and get new baselines (is "new baselines" even a thing).

I always advise talking to a doc about anything (you feel is) important, but never be shy about advocating for your health. Now that's a rant. Thanks for replying, @brokenlady62. Cheers!

REPLY
Profile picture for redraider
redraider | @redraider | Feb 12 4:26pm
In reply to @beanieone "Unfortunately, dvargo, I had (most of) the fractures pre-Tymlos/Evenity. The first was c. 2017, and my..." + (show)
Profile picture for beanieone @beanieone

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!

Jump to this post

@beanieone
May I ask what kind of medication you take to keep your kidneys from excreting too much calcium? I have never had a 24-hour urine test, but I've always wondered if that could be my problem, too.

REPLY
Profile picture for beanieone
beanieone | @beanieone | Feb 13 10:29am

Hi @redraider

Sure - the med is chlorthalidone. I'm reading as much as I can as fast as I can and preparing a list of questions about the drug for my doc. From what I know, it is generally used to treat high blood pressure and edema (of which I have neither) and it can be a bit fussy with regard to electrolyte imbalance. Some research has indicated that the drug has been successful in building hip/femur bone, but it has not been approved by the FDA for use as such. There are some additional side effects and everything should be considered (just like considering whether or not to take Tymlos, Evenity, Prolia). I'll have another infusion of Reclast in July; a treatment I'm very familiar with.

I don't know whether to be elated that a widely-prescribed - $0 - med might really help my OP or really upset that no other doc, at least in the last 10 years, has tried to determine if there's something besides "you just have it, now let's try another bone-building med . . ." Don't know if this current therapy will work, but crossing those fingers pretty hard and hoping this new doc is onto something.

Best of luck in your quest. Cheers!

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