My Experience on Evenity for Treating Osteoporosis

Posted by arlene7 @arlene7, Jul 7, 2020

Thought I would share for those considering or on Evenity for osteoporosis:
Afer much research and discussions with my GP and Cardiologist, I have decided to start my treatment with Evenity injections. As with all drugs, there are many side effects. My biggest concerns were stroke and heart attack. However, considering that I do no have any history for either, for me personally, the benefits outweigh the risks. As my GP said to me, "if everyone only thought about the side effects of the drugs, no one would be taking them".

I had my first injections (subcutaneously in the back of each arm) on June 30th. The nurse that administered the injections discussed the drug in depth, along with all the possibilities that may occur. She also mentioned that for all the patients that she has seen, none has had any side effects.

The injections are once a month for only one year, so I'm hoping that this works well for me and I can improve my bone density, especially in my spine, where I need it the most.

My endocronologist has also prescribed Hydrochlorthiazide for my idiopathic hypocalcemia. I have an appointment with an allergist this month to confirm whether I still have an allergy to sulfa drugs, since this drug contains sulfa. Apart from this I take D3 orally and try to obtain additional calcium through foods not supplements. Trying to walk 3-4 times a week and will begin with a few weight bearing exercises.

My journey began September, 2019 when I was diagnosed with severe osteoporosis. After waiting to see three doctors, receiving three denials from insurance company for Evenity, which took several months, I am hopefully on my way for a favorful outcome.

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

@spiderplant

As kmichels writes one has to be proactive but it sure can be tough / confusing. In my case I wish I could get a second opinion as far as post-Evenity plans but as that means waiting months for an appointment that's off the table.

I am two months after my last Evenity year of shots and sounds like most people here were told to be concerned about losing their gains and go into another treatment soon after. I had my scan 6 weeks after and doctor appointment 7 weeks after (tried hard to get it sooner but no luck) and the endocrinologist insisted that gains remain for 3 months and seemed totally chill on the subject… seems we all are told such different things!

He’s encouraging me to go with Reclast saying 30% feel sick the first few days and then are fine and yes heart issues are rare but possible (didn’t mention the serious kidney issue risks) … or I could go with Fosomax but that it’s less effective. My dentist said Reclast is very potent stuff and better in general to take another option.
...I’m 64 and changes after Evenity (6 weeks later) were spine -3.7 to -2.4, hip -3 to -2.7, f.neck -3.4 to -3.1 and arm -2.2 to -2.4.

This doctor is in a well known big hospital. Years ago I was sent by the head of another department for a put in as urgent MRI — they saw me late at night that same day — for something all doctors said after was obviously unnecessary. It left me with a fear that I’m trying to get over that there’s incentive to push for whatever they can bill for and not necessarily what's best there. They get nothing from Fosomax as we get that from any drugstore. So I’m nervous that just as the department seemed lackadaisical about my appointment timing now might me about the treatment options.

Or maybe he’s on the ball with all of it and weighs sensibly risk vs gains?

I had a female endocrinologist initially who was detail oriented and got into the weeds with her concerns and explanations but she chose to go into another specialty. So wish I had her ear now!

But what to do next with confidence: I just don’t know.
It’s great to be able to read other’s thoughts and experiences though.

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@spiderplant I have a lower dose but more frequently- of Reclast. I have kidney disease and get IV hydration (but really two big cups of water are the same) and an infusion over an hour. The first time I had a fever and was fluish but have been fine since. I react to everything but Reclast has been fine.

My doctor wanted me to have Reclast before two months was up after Evenity but I only did 4 months of Evenity (after Tymlos) so the antiresorptive effect of Evenity for me may have been lower.

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It's fascinating here on the different recommendations we have received from our respective physicians.

I see an endocrinologist. I had an appointment with him on November 25. I did 12 months of Evenity injections and finished those on October 31. My endocrinologist told me that the gains that I made on Evenity as evidenced by my bone density scan results of November 18 (6% gain in my left hip which is significant and 4% gain in lower spine which isn't significant but still a gain) would rapidly decrease the longer that I wait to start the biophosphonate to lock in those gains. He said that by 3 months after Evenity much of the gain is lost and it's best to start the next step of biophosphonate within one month of finishing Evenity. This assumes, of course, that one can get everything lined up perfectly such as bone density scan and appointment with your doctor.

I am getting my first Reclast infusion on December 4. The plan is to do this annually for 3 doses. My endocrinologist said I may experience flu-like symptoms for a day or two and to take Tylenol if that occurs. He did not say anything about taking Claritin prior to the infusion. I take a daily certrizine (Zyrtec) for allergies and I won't add Claritin on top of that. I see no harm in proactively taking a 1000mg of Tylenol prior to the infusion.

If I experience side effects from the Reclast infusion I'm hoping these are short-lived. Side effects are far preferable to frailty, pain, and the compression fractures that my mother experienced when she was my age (72 years old). For my mother, this was in the 1980's and early 1990's before there were the options that we have now. My mother's quality of life would have been so much better had she had the options that we have now.

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@windyshores

@spiderplant I have a lower dose but more frequently- of Reclast. I have kidney disease and get IV hydration (but really two big cups of water are the same) and an infusion over an hour. The first time I had a fever and was fluish but have been fine since. I react to everything but Reclast has been fine.

My doctor wanted me to have Reclast before two months was up after Evenity but I only did 4 months of Evenity (after Tymlos) so the antiresorptive effect of Evenity for me may have been lower.

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Thank you for sharing your experience, windyshores. Glad and it's comforting to hear that Reclast was without issues for you after the initial fever the first time around. (A little disconcerting that you also heard to do it within two months but maybe indeed it's helped by my having had Evenity for 12 months).

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@naturegirl5

It's fascinating here on the different recommendations we have received from our respective physicians.

I see an endocrinologist. I had an appointment with him on November 25. I did 12 months of Evenity injections and finished those on October 31. My endocrinologist told me that the gains that I made on Evenity as evidenced by my bone density scan results of November 18 (6% gain in my left hip which is significant and 4% gain in lower spine which isn't significant but still a gain) would rapidly decrease the longer that I wait to start the biophosphonate to lock in those gains. He said that by 3 months after Evenity much of the gain is lost and it's best to start the next step of biophosphonate within one month of finishing Evenity. This assumes, of course, that one can get everything lined up perfectly such as bone density scan and appointment with your doctor.

I am getting my first Reclast infusion on December 4. The plan is to do this annually for 3 doses. My endocrinologist said I may experience flu-like symptoms for a day or two and to take Tylenol if that occurs. He did not say anything about taking Claritin prior to the infusion. I take a daily certrizine (Zyrtec) for allergies and I won't add Claritin on top of that. I see no harm in proactively taking a 1000mg of Tylenol prior to the infusion.

If I experience side effects from the Reclast infusion I'm hoping these are short-lived. Side effects are far preferable to frailty, pain, and the compression fractures that my mother experienced when she was my age (72 years old). For my mother, this was in the 1980's and early 1990's before there were the options that we have now. My mother's quality of life would have been so much better had she had the options that we have now.

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Thank you Helen for sharing your experience and particularly your point about your mother at the end! So true. (And glad for you that you had the gains.)

My scan and endocrinologist appointment was set when I started on Evenity a year before and I so wish I had double checked their math and planned the appointments around it as my appointments were fairly close together and I ended up with 7 weeks before my follow up and the scheduling for Reclast may put me at 3 months post Evenity. These conversations are giving me a push to try hard to find cancellations there.

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@normahorn

Maybe you could request a lower dose of ReClast. That is something I will be giving serious consideration to.

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Thank you ... that's an idea. Just seeing articles suggesting the currently recommended dose might even be an over-treatment.

I've also been seeing that the irregular heart beat risk can be more of an issue with a leaky heart valves (which I have but is mild and supposedly quite common... apparently many have it and don't even know)...another reason for a smaller dose perhaps. So wish there was more data on all this.

I can imagine this doctor saying with irritation that if he thought a lower dose would have been better he'd have suggested it in the first place... unlike some who would be up for discussing it. But something to keep in mind! Am curious if you look into it or do it how that will turn out...!

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@jdshep

Due to hypercalcium level related to parathyroidism.
Had a parathyroidectomy ,
x1 in 2022. Reclast was not working so Dr said Evenity was only one left that does not stimulate parathyroid to release. More ca to bone. Only 3 shots left...yahoo

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Great! Do you know what you'll take after the Evenity?

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@naturegirl5

It's fascinating here on the different recommendations we have received from our respective physicians.

I see an endocrinologist. I had an appointment with him on November 25. I did 12 months of Evenity injections and finished those on October 31. My endocrinologist told me that the gains that I made on Evenity as evidenced by my bone density scan results of November 18 (6% gain in my left hip which is significant and 4% gain in lower spine which isn't significant but still a gain) would rapidly decrease the longer that I wait to start the biophosphonate to lock in those gains. He said that by 3 months after Evenity much of the gain is lost and it's best to start the next step of biophosphonate within one month of finishing Evenity. This assumes, of course, that one can get everything lined up perfectly such as bone density scan and appointment with your doctor.

I am getting my first Reclast infusion on December 4. The plan is to do this annually for 3 doses. My endocrinologist said I may experience flu-like symptoms for a day or two and to take Tylenol if that occurs. He did not say anything about taking Claritin prior to the infusion. I take a daily certrizine (Zyrtec) for allergies and I won't add Claritin on top of that. I see no harm in proactively taking a 1000mg of Tylenol prior to the infusion.

If I experience side effects from the Reclast infusion I'm hoping these are short-lived. Side effects are far preferable to frailty, pain, and the compression fractures that my mother experienced when she was my age (72 years old). For my mother, this was in the 1980's and early 1990's before there were the options that we have now. My mother's quality of life would have been so much better had she had the options that we have now.

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Thanks again for your story. If you don't mind, which country are you in? I'm in Canada and the Evenity would be $800 a month, and I'm not sure if any insurance company would cover that, so that's why I'm wondering if you were denied insurance in Canada? (and if they know ahead of time that I'd be doing this drug they certainly wouldn't be interest in taking me on!)

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@yogalisac

Thanks again for your story. If you don't mind, which country are you in? I'm in Canada and the Evenity would be $800 a month, and I'm not sure if any insurance company would cover that, so that's why I'm wondering if you were denied insurance in Canada? (and if they know ahead of time that I'd be doing this drug they certainly wouldn't be interest in taking me on!)

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@yogalisac I am in the U.S. I have Original Medicare. Medicare Part B ($174.70/month with an annual deductible $240)) and my supplemental insurance ($160/mo) paid the full price of $5000 (yikes!!) for the Evenity each month. I pay out-of-pocket for my Traditional (also referred to as Original) Medicare Plan and I easily meet the deductible every year. Insurance is a mess in the U.S. as you probably know. With Original Medicare I do not need pre-approval.

$800 per month is a lot. Evenity is still at the propriety phase with no generic on the market so the medication is expensive.

I shared a lot of information but does this answer your question? What province are you in?

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A few years ago I had Reclast and I felt bad (achy in neck and joints and slightly”fluish”) for about 3-4 days. I used alternating Tylenol and Advil and rested until I felt better. Then after that, no problem. I will do it again if needed. I took 1000 mg Tylenol and drank the prescribed amount of water beforehand. They slowed the infusion from 15 minutes to 30, since I had never had it before and no allergic reaction that day.

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@spiderplant

Thank you ... that's an idea. Just seeing articles suggesting the currently recommended dose might even be an over-treatment.

I've also been seeing that the irregular heart beat risk can be more of an issue with a leaky heart valves (which I have but is mild and supposedly quite common... apparently many have it and don't even know)...another reason for a smaller dose perhaps. So wish there was more data on all this.

I can imagine this doctor saying with irritation that if he thought a lower dose would have been better he'd have suggested it in the first place... unlike some who would be up for discussing it. But something to keep in mind! Am curious if you look into it or do it how that will turn out...!

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I was looking for another study and found these that I had saved on ReClast dosage. Ammo for you,

Shared files

ReClast NEJMoa011807 (ReClast-NEJMoa011807.pdf)

low-dose reclast (low-dose-reclast.pdf)

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