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.

The medication guide provided for Reclast states that at least ,2 glasses of liquid are to be consumed a few hours before infusion to protect kidneys.

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I just wanted to update all on this site about my latest DEXA results after 5 doses of Evenity. Unfortunately I had no improvement at all. I truly did not expect any difference since all the other medications I have ever taken also showed no improvement. I am unique( or strange) in that medication does not help my Osteoporosis. Because I saw no gain, I will not go on any other medication ( the only left would be Fosimax or Reclast). I don't want others on this blog to be discouraged though, I really hope it works for everyone else. I will continue to be positive, enjoy life with safety in mind always and hope for the best.
Lisa

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@windyshores

@sal462 have you tried Tymlos or Forteo?

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I never heard of Tymlos til seeing I this site last night (I had signed up but somehow never accessed it) So far I am trying to do this drug-free but I know that may be dreaming - my ex sister in law just had her first Reclast the other week, she is in her mid 50s and she pointed out to me that if weight bearing exercises even prevented osteoporosis much less reversed it she never would have gotten it, she's worked out w a trainer for years , plays tennis, fences, skis, runs. It's like the perfect athlete and there she was with a bad bone density test. And yet the side effects so scary - I get dizzy from more than 3 days of anything, otc non-steriodals, Tylenol, so when people mention tinnitus i worry that these drugs affect ears and even if they don't cause the jaw necrosis I'll be dizzy.

It is interesting that you mention Forteo tho. My aunt did that for years - expensive, put her in the donut hole - but a couple months ago I was having a tooth (that had a graft, exactly what you shouldn't do while taking the drugs) being checked by a new guy in my periodontist's practice . Told him my problem. He said you can take Forteo, it doesn't do that. My regular dentist at one point said do none of the new drugs, their half life is longer, just do Fosomax so you can stop taking it if you need a treatment.

I will look up Tymlos.

I am right now feeling dumb because I realized I got my dx at 62, that was only 5 years from menopause for me, I should have done HRT , I would have had a few years to build up bone density before it was too dangerous (although got BC at 66, would have of course blamed self even more if I'd done the HRT the prior 3 years ha ha).

THANKS for response. It is such a dilemma. And now I see a Margaret Martin video that says the way I've been doing squats - holding my 4 pound dumbbells in front as I squat - -is all wrong, that I'm putting a fracture causing load on my vertebrae. You could spend your life trying to find the answers to this.

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@sal462

I never heard of Tymlos til seeing I this site last night (I had signed up but somehow never accessed it) So far I am trying to do this drug-free but I know that may be dreaming - my ex sister in law just had her first Reclast the other week, she is in her mid 50s and she pointed out to me that if weight bearing exercises even prevented osteoporosis much less reversed it she never would have gotten it, she's worked out w a trainer for years , plays tennis, fences, skis, runs. It's like the perfect athlete and there she was with a bad bone density test. And yet the side effects so scary - I get dizzy from more than 3 days of anything, otc non-steriodals, Tylenol, so when people mention tinnitus i worry that these drugs affect ears and even if they don't cause the jaw necrosis I'll be dizzy.

It is interesting that you mention Forteo tho. My aunt did that for years - expensive, put her in the donut hole - but a couple months ago I was having a tooth (that had a graft, exactly what you shouldn't do while taking the drugs) being checked by a new guy in my periodontist's practice . Told him my problem. He said you can take Forteo, it doesn't do that. My regular dentist at one point said do none of the new drugs, their half life is longer, just do Fosomax so you can stop taking it if you need a treatment.

I will look up Tymlos.

I am right now feeling dumb because I realized I got my dx at 62, that was only 5 years from menopause for me, I should have done HRT , I would have had a few years to build up bone density before it was too dangerous (although got BC at 66, would have of course blamed self even more if I'd done the HRT the prior 3 years ha ha).

THANKS for response. It is such a dilemma. And now I see a Margaret Martin video that says the way I've been doing squats - holding my 4 pound dumbbells in front as I squat - -is all wrong, that I'm putting a fracture causing load on my vertebrae. You could spend your life trying to find the answers to this.

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Tymlos is similar to Forteo in the way it works and does not cause dental issues. Some of us sensitive folks prefer it because the injection pen has "clicks" that allow us to adjust the dose. So I started with 2 out of 8 clicks and moved up to 6 or 7- a partial dose- and I still have excellent gains. For the last two months I am doing the full dose. My doc loves this and is sharing with other patients.

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@windyshores

Just to clarify- sorry for being unclear- McCormick says to do Reclast immediately after the year on Evenity so I guess this would be one month after the last injection. Check with your doc on this!

I asked about getting IV hydration before the Reclast infusion and my doc said drinking was just as effective.

Glad you watched Dr. Leder's video! It covers the same ground as Dr. McCormick's book so you're good!

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Hello,
Reclast order was placed yesterday, and the infusion center reached out to me this morning.
Scheduled Reclast August 15th…. 27 days after my last July 19th Evenity. The infusion is 30 minutes, preceded by sodium chloride (?) and 30 minute observation. I’m encouraged that they have a protocol that seems in line with what I’m gathering from this blog. I’ll do my part with hydration in the days leading up to the 15th, day of infusion and days to follow. Feeling a bit anxious, just as I was with Actonel & Evenity! However, I managed fairly well on all meds so far. Hoping Reclast will ‘lock-in’ my gains and continue to strengthen my bones.

Final step is to make sure that proper labs have been ordered prior to infusion.

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So sorry to hear about your difficulties. Have you discussed Actonel or Fosamax as alternate options to Reclast? What I’m learning about Osteoporosis is that there are so many variables, variations, and no ‘one size fits all’. Stay positive and don’t stop exploring your options. You’ve inspired me to do more with regard to exercise…..even if just a brisk walk several days a week!

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The saline flush of the IV contast line for a CT scan left me light headed. Something to be aware of that could happen to you.

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@gretch19

I'll be interested in hearing how you do with it. I start on Aug 15. I'll be sure to post about my journey.

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Sorry for my delayed response. I am new to this.
Turns out that Blue X will consider co-pay. They initially withheld that info from me! After I hear about approval for co-pay, I’ll get started on Evenity. I don’t feel good about having to take an osteo drug for the rest of my life.
And - I recently read that our bones will look really good after a year on Evenity; however, Evenity does not reduce fractures!

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@pedsnurse61

I just wanted to update all on this site about my latest DEXA results after 5 doses of Evenity. Unfortunately I had no improvement at all. I truly did not expect any difference since all the other medications I have ever taken also showed no improvement. I am unique( or strange) in that medication does not help my Osteoporosis. Because I saw no gain, I will not go on any other medication ( the only left would be Fosimax or Reclast). I don't want others on this blog to be discouraged though, I really hope it works for everyone else. I will continue to be positive, enjoy life with safety in mind always and hope for the best.
Lisa

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Lisa, very sorry to hear your news on the DEXA results. I'm so glad you have the right attitude, bc life is just not easy. I like your words to live by. 🥰

Patty

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@daisy2022

It was interesting to read everyone’s experiences. I began treatment in November, 2021 and have completed 6 months of the year long plan. My side affects are mostly of swelling at the injection site in my arms and fatigue the day after. I’ve found using massage, heat packs, and sometimes lavender oil to help the medication disperse more quickly. My left arm seems to hold the fluid longer which accounts for the different methods to help with the swelling and fluid dispersement. In general I feel great. Like many of you, my spine is the main reason I began this protocol and hope it is successful. I’ll continue to check back to see how our journeys are progressing.

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Searching . No much success stories.. Can you advise pros after the year . What’s the bone density improvement?? Looking for a positive . So difficult 😥

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