Can Prolia be safely and reasonably discontinued?

@joan26 Like others, expressing sorrow for your injury. I've been on Prolia since 2009—no side effects. Was about to turn the corner to Reclast (not a fan) to seal things off. A bad fall this summer resulted in 8 broken ribs and still recovering. I'm due for Prolia in April, doc says no Prolia—Evenity. I didn't know this could happen so fast, yet I'm afraid of Evenity. Guess this has to be worked out quickly on my end. It's heartbreaking to hear what's happened in your case. My thoughts are with you.

@windyshores Thank you so much for your contributions! You share so much information freely in such a calming, positive manner. In fact, the first night here I was terrified by what I'd read in the forums. You brought that to my attention as I was looking everywhere for information. Now I'm still scared but not terrified. My many thanks to you!

Sorry to hear about your broken ribs!
For what it's worth, I had started Tymlos for one month when it first came out, but daily shots in my tummy stressed me, and I was scared because it was a new drug, so stopped it. After a year or so, I started up again and I am finishing the 17 months just now. Bottom line, I believe it was worth taking the Tymlos. My spine increased density 15%, and hip and wrist 4-6%. I don't no anything about Evinity, but hopefully my experience with taking the "new drug at the time - Tymlos" will ease a bit of your stress if you decide to take your drs. advice with Evinity.

There is a typo in that post of mine, that you responded to. I meant I am "now" on Tymlos not "not on Tymlos." Hopefully that was clear! I really need to wear my glasses when posting 🙂 I can relate to all the fear but am so happy to be tolerating Tymlos. I would also consider Evenity. There is hope!

@grannyc123tssb Thanks so much for your support! I'm trying to work on them with a new mattress (I know, sounds weird but helps), PT at a facility and very low impact at home. My friends are Advil and a heating pad, especially at night.
On Tymlos, I know I just said this to someone else...I can't see myself doing the daily shots, no less giving them to myself! BRAVA!! You went back, conquered that fear and look at where it got you! Congratulations, can I add your numbers to mine?! : -) 2 more consults to go and then my decision. I want to be 4 again—we didn't have to make such huge decisions. It was more like: which toy am I going to bring out first and praying there was enough Mr. Bubble in the house for my bath!

@windyshores I understood what you meant....a graphic designer of 40 yrs, I'm now half blind trying to see *with* glasses. I've seen you reference 'tolerating Tymlos' a couple of times—does that mean the side effects are difficult to deal with? I'm living on hope these days—a really rough couple of weeks here—especially after x-rays and DXA results. But being in this group has helped me tremendously, I'm pushing on to somewhere! Please forgive my typos as well, I'm on cheaters until I get another eye exam!

@giannam yes, for me, Tymlos has side effects. I take it in the morning and am fine in an hour or two. I think, as with any hormonal medication, that the side effects change over time. After 6 months, no heart palpitations, no nausea, no headache, just a feeling of weakness for an hour or two. It is worth is to avoid fractures! You have fractured ribs, and I have fractured vertebrae: I know I am committed to meds at this point!

I liked the option of Tymlos because the dose can be adjusted so I started with two clicks rather than eight, and moved up slowly as my body adjusts. To me the shots are no big deal but I respect your fear.

I watched a video of an interview with Lani Simpson and a woman who had done Tymlos and then Evenity. She indicated it was better to do Tymlos first, then Evenity. I don't know if that is true but it makes sense because Tymlos grows bone without suppressing resorption, but Evenity does both. I thought at the time that Tymlos might grow better quality bone, but I have no idea if that is true either. (Dentists need to know about Evenity, but not Tymlos.)

Evenity, I have read, "turbocharges" bone growth and so I seriously considered it instead of Tymlos. In the forums I have been on, very few people seem to have significant side effects from Evenity, besides sore arms briefly. Whatever you do, good luck!

@windyshores, Just reread my post and see the order of my treatment mixed up a little at the end. Sorry, more frazzled as the time nears to make a change.

Here’s my sequence: the first part about Reclast being a nightmare for me is spot on. I was not a candidate for things like Fosamax or Boniva. Reclast was the only option I was given and was never on anything else for osteoporosis. Perhaps because I was teetering from osteopenia to osteoporosis. I wasn’t pushed into taking anything. When the time came I liked Reclast was once a year and didn’t have to add another med to my daily arsenal. But I had a severe reaction from Reclast from the start (within the first few hours) which lasted for months, albeit not as horrible as the first month. The next year I opted out of everything and tried controlling with diet & exercise.

My doc (at the time) provided labs and bone density in his office, so I had a BDS every year. My scores weren’t great and Prolia was recommended. I’ve taken it for 12 years with no side effects and no bone loss or fractures of any kind.

Changed Endo’s while on Prolia and finally found someone I have complete trust in. Last year she (Doc) said with this much time clear it was time to go off Prolia and have one Reclast to seal the gains : - o. !!!

6/5/21 tripped over potting soil into a wood pallet stocked w logs then onto concrete floor. Fractured 6 ribs, 2 were acute, one still not healed to date. 11/30/21 felt big change in pain, x-ray showed another acute fracture. I was sent for DXA & full spine X-rays early March. Doc then said in April I should move to Evenity. After much research (not great on Evenity and black box warning) I stumbled across this group while on Mayo’s website! Yeah—so grateful to everyone here.

Wasn’t happy about Evenity findings but now seeing some positive. I wanted a 2nd consult, she encouraged it. It’s been impossible to find someone reputable that isn’t booked into July. I reached out to a couple docs of mine, so did my own Endo. We each found one—hers, excellent, but retired in Sept., mine excellent booked until June. Hers continues research, lectures, but sponsored for some things by Amgen. They conferred about my case, treatment suggestion: Reclast in April then as numbers go up, Evenity. My other doc called his recommendation, pleaded my case. She agreed to review it by me uploading records to her portal. Called the next day and will see me this Saturday for consult.

In gathering my records I noticed Radiology missed something on the original report. Add in another rib. I’ve now gone from 6 to 8 ribs. Oddly, had dinner with friends this last Friday….the wife was on Tymlos a few yrs ago, said it wasn’t that bad, side effects but could handle them. Proceeds to tell me sometimes she forgot to take it then just stopped by herself. ???

You mentioned heart palpations, may I ask if you’re on any heart meds? I have hypertension bordering on the need for an additional drug to lower those numbers. Can you tell me who Lani Simpson is? I’d like to see that video. Thank you so much for all of the information you share, it truly means a lot to me!

Tymlos has not caused much in the way of heart palpitations once I figured out it was best to start at two clicks and move up to 8. For me. I have had almost no heart palpitations on 7 clicks for several months.

The difference, as far as I can tell, between Tymlos/Forteo and Evenity, aside from how they work in the body, is that Evenity suppresses bone turnover as well as growing bone. So if your doc is feeling like you have been on Prolia too long, and you are having fractures, I would think you would want to avoid any meds that suppress bone turnover, and do Tymlos instead, which only grows bones. But I am only being logical and your doctor may know things I don't, like relative effectiveness of each drug after years on Prolia.

Lani Simpson writes books and has a Facebook group. There are also Facebook groups for each med. Keith McCormick wrote a book as well. Lani is considering meds or might have started, and Keith took meds, so although both are kind of in the alternative/natural treatment world, they both recognize the need for meds, so I find them to be balanced.

It's been a year, and I imagine you've resolved your problem by now. But just in case, you can go to dispatchhealth.com, and they will find a doctor who will come to you.