What would you do? Medication.

Please tell me about your experience with Tymlos and Evenity.

The long and winding road! I started Tymlos injections in November, 2022. Although I didn’t like the idea of 720 needle sticks I really wanted a stronger spine (four vertebral compression fractures) so I faithfully adhered to the schedule. By mid-February, I was messaging my doc about constant nausea which persisted even with ondansetron, and the beginning of what would turn out to be almost debilitating side effects. Namely, upper and lower back pains, sharp ankle pains, rapid heart rates (100+), heart pounding, gripping shoulder pain, chest pains, rib pain, GERD and other lower GI issues. By the end of March I was in the ER, unable to take a deep breath because of the extreme pain - this was after PT and too many pain relievers that did nothing. Saw my cardiologist for two echocardiograms and a pain management specialist for trigger point injections (which my spine doc later said may cause more problems). I also managed to gain about 30 pounds due in part to inactivity. Whew!

Another ER visit by the middle of June, and by the third week in July, I had had enough! I decided I couldn’t continue using Tymlos and consulted my doc; he didn’t suggest ramping down the dosage to adjust for my smaller body, however he did approve stopping the Tymlos for two weeks to see if my symptoms improved. Guess what . . . within those two weeks, my symptoms pretty much resolved!!

In August, 2023, I started Evenity injections; two shots, one in the back of each arm, every 28 days. The shots are mildly uncomfortable and, until the last dose, I had a reaction the same as if I had a flu shot; easy peasy. The last dose caused no issues and I had neither pain nor reaction - the nurse who administered the injections told me she took them out of the fridge and let them warm up a bit. One other thing of note that I read in another post was a question about long, vivid, disjointed dreams which I’ve been having of late but might just be unrelated. I wish I had started Evenity in November, 2022 instead of Tymlos - I would already be finished. I felt like my doc was pushing Tymlos; when I asked him about Evenity, he said, “Well, I could probably get you approved”. But, shoulda coulda woulda.

The costs are a bit different on my insurance plan: As Tymlos is self administered, it is considered a drug under my advantage plan and the copay is 20%; pretty pricey until you get into and out of the donut hole. Evenity, however, is billed as meds plus a charge for the office visit. Overall, the Evenity probably wins out for being cheaper, not only because of the type of procedure and the way it’s billed, but because it’s only for one year, not two.

Per a DEXA in January, my t-score at L1 (which was previously fractured) has improved to -1.0 (yay!) but I will never know if it was the Tymlos, Evenity or both that gave me a 28% increase!!! I also faithfully take calcium, vitamin D and magnesium and try to do weight-bearing exercise whenever possible. I will likely choose Reclast as a maintenance drug.

It seems like there are horror stories and great outcomes from both meds; if only we knew which one would work for an individual. I would suggest that if you start either one and have crazy symptoms, don’t be afraid to seek help from your docs; they don’t always know what’s best for everyone and it’s not a one-size-fits-all solution.

I wish you the best in your journey. If you have any additional questions, please reach out. For me, it truly has been a long and winding road.

Cheers!

Docs probably won't suggest going down on the Tymlos though my doc has adopted that practice for his patients after my success in getting on Tymlos by starting low. And I had 20% gain in spine on 3/4 or 7/8 dose.

We are all different. I am struggling with Evenity and miss Tymlos! I have been reading about effects of Evenity (low sclerostin) on inflammation and immune system (B cells) and wonder if my autoimmune issues and high CRP are reasons for my reaction. (And another weird, long, complicated dream last night!). I began Evenity soon after a serious case of COVID and had high CRP and sed rate so who knows....

windyshores,
Even though I always post on here that I’m not having any side effects, I do wonder if I will have long term side effects that aren’t obvious now.
My OA and general creakyness seem a little worse, but I don’t know if that’s the Evenity.

I'm not taking Forteo but I am experiencing side effects (I'm not kidding). LOL. I think it's possible to assign every malady to this kind of strong medication. It reminds me of the start of Covid when I thought every sniffle, tickle or whatever was a symptom, but the truth is, who knows? And that's the issue.

@susanfalcon52 McCormick said 40% of his patients have joint pain on Evenity. If you read about sclerostin, that makes sense. Evenity inhibits sclerostin.

I have done cancer meds and two bone meds at this point and there have been side effects to all of them. Some people have none, but many will have side effects and decide it is worth it to avoid fractures (or cancer!).

In my experience, walking every day or some other gentle exercise helps a lot. Hope it does for you.

I did the full dose of Tymlos for one month, and then a half dose or less for the second month. Side effects were bad -- pulse rate over 100, and feeling bad for hours. Doing it at night just ruined my night's sleep.
I wish I had started with a very low dose of Tymlos, maybe 2 clicks out of 8, or 25%. Perhaps I could have developed a tolerance for it. Please note I weigh 92 pounds -- which may explain why the normal dose was too high for me.
My doctor checked my bone markers before and after 2 months (C-terminal telopeptide (CTX) for bone resorption, and procollagen type 1 N propeptide (P1NP) for bone formation, in blood tests), and they both went up a lot (multiplied by three or four times, really)! I think that means that even the low dose was having the desired effect.
I'm switching to Forteo, which may be mistake, because apparently it's not possible to adjust the dose of the injection pen. I'm disappointed! I'll start with alternate days, and pray my pulse doesn't race again.
BTW, I did a year of Evenity first, with very good results. My only side effect was a slight, chronic tingling in the toes of one foot. Since I'm thin, I got the 2 injections in the sides of my thighs, which worked well. My BMD improved by about 12%.

@babs10 Here are some ideas about the cost of drugs, and insurance coverage:
Have you tried various kinds of appeals to your insurance company? Your doctor can fill out some special forms that say you're at high risk of fracture. In that case, many insurance companies will cover other, more expensive drugs that are not on their usual formulary. You can ask if your insurance company has a Case Manager you can speak to. And, you can possibly switch to a better drug plan for next year. (The Medicare website lets you test out what different companies will pay for specific drugs.)

Many drug manufacturers (like Radius Health for Tymlos, who promises to respond quickly) offer financial assistance if your income is below a certain level. Also, there are non-profit foundations like "The Assistance Fund" that might possibly help (though it may take several months to get on board with them.) Some (public?) hospitals (through their outpatient specialty pharmacy) have special reduced rates for certain expensive drugs. Even big chain pharmacies like CVS may offer financial assistance.

Another trick is that your doctor could possibly write it up in a way so that your Part B will cover it, instead of Part D. What's good about that is that your copays would count toward your annual out-of-pocket maximum, which could add up fast, in a few months, and then you'd pay nothing for the rest of the year. (They might not allow it, though. I'm not sure.)

How terrific that you hiked the Camino de Santiago! And a Europe bike trip, too. Good for you! They say that having strong muscles is great for protecting our bones.

I was like you, wanted to avoid medications and possible side effects, and I ended up with 2 vertebral compression fractures at age 71. My endocrinologist told me that after a certain point, nutrition and exercise alone are not helpful enough. The fracture experiences were hell, extremely painful and debilitating A year and a half later, the fracture experience still adversely affects my health and quality of life. I'd advise you to avoid that at all costs. So please do your research, leaving no stone unturned, and then make a decision. Good luck!

@laurafuentes sorry about the fractures and so grateful you posted about the pain, disability and long lasting effects. I have had the same experience. Those of us who have had bad fracture experiences really wish others might avoid them!

Glad Evenity helped you. Could you still go down to two clicks on Tymlos and move up? If not, good luck with Forteo.

@laurafuentes I'm sorry to hear that tymlos didn't work out for you, hope you have a great success on forteo.

I'm wondering how high your p1np and ctx went after 2 months of tymlos, do you mind share? Having tested only couples of times, my p1np was at 400 after 13 mo of forteo (no ctx). At 17 mo, p1np was at 200 and ctx at 900, which worries me somewhat. My high p1np also didn't correlate high gains in bmd, only average-ish on L spine, no hip or femoral neck gain. I'm eager to see what second year result will reveal.

In addition, what relay drug did you take after evenity, and before tymlos?

Thanks a lot!