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.

@artscaping

Happy Snow Day (in MN), @dmanduca, It looks like you have a health plan in progress. Thanks for sharing it with me. How did you lose 1.25 inches in height? I lost 3 inches in the last few years. I was 5'8" and liked that height. All of a sudden my dress pants are all too long. Can't roll them up well. At my annual, my PCP said I was now 5'5". I made her show me.

So I do have another question. Would you mind sharing with me the evidence you have found that says you may be allergic to Fosamax? Here, briefly, is why. I went from Tymlos to Prolia. That was not successful. I found a new endocrinologist who stopped the Prolia which was injected every 6 months and changed to Fosamax which presents as a tablet that I take every Monday morning. It appears that some of us cannot handle a 6 mos supply of medication in our bodies. Reducing the amount and increasing the frequency seems to work well. Just another idea for your research and planning.

May you be healthy and happy!
Chris

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I have to assume the height reduction was due to osteoporosis but it may also just be part of aging. I took Fosamax once a week for three weeks. I developed a severe rash on my left wrist. It had a purple core. Again, it’s an assumption. On one of the video conference I watched the doctor suggested she would discontinue Fosamax if there is widespread hives. Neither my endocrinologist or myself can absolutely conclude it was from this drug. She did say she’d never seen such a severe rash. I’m hoping to give it another try to eliminate another cause.

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@bettersleep68

No...it is not a disease that can be cured... I got mine from hereditary..you have no choice...sorry but I am hoping for future treatments .

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Sorry about your hereditary hope for your sake and all of ours there will come some answers
I got mine from a operation a gastrectomy but i do all i can to try and over com this dreadful problem
I juice 50 oz of fresh vegetable juice (all green) a day organick
wheat grass for 40 years 2times daily
35 vitiams daily
try to eat meat and fish protein at every meal
i do not know what is right or wrong but i got a t12 fracture 2 years ago and have been in terrible pain from that ,don't want to do that again !
But God bless You

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@artscaping

Happy Snow Day (in MN), @dmanduca, It looks like you have a health plan in progress. Thanks for sharing it with me. How did you lose 1.25 inches in height? I lost 3 inches in the last few years. I was 5'8" and liked that height. All of a sudden my dress pants are all too long. Can't roll them up well. At my annual, my PCP said I was now 5'5". I made her show me.

So I do have another question. Would you mind sharing with me the evidence you have found that says you may be allergic to Fosamax? Here, briefly, is why. I went from Tymlos to Prolia. That was not successful. I found a new endocrinologist who stopped the Prolia which was injected every 6 months and changed to Fosamax which presents as a tablet that I take every Monday morning. It appears that some of us cannot handle a 6 mos supply of medication in our bodies. Reducing the amount and increasing the frequency seems to work well. Just another idea for your research and planning.

May you be healthy and happy!
Chris

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Yes. Chris. The idea of putting an injection into my body that is supposed to last six months without knowing how I'll react to it first, really scares me. I tend to be very sensitive to medications and prefer the idea of taking something that I can stop if I really don't feel well.

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@ann707

Well my endo got back to me and essentially he said Evenity may be causing the joint issues but it may be an underlying degenerative arthritis. Well I am older so having some arthritis would not be surprising. But my question to anyone who had joint pain: did it get better or less of an issue over time, did it lessen after you finished Evenity? It's the lack of information that is maddening. I will give Amgen a call and see what they have to say but I'm not expecting much from them. I guess my real concern is that the joint pain will be permanent or take a long time to resolve.
I will be seeing a ortho guy about a sore wrist (cyst) and see what he has to say.
To be clear the joint pain isn't debilitating just sore.

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Follow up I posted this in the other forum but decided to include it here. I took 8 shots but was having increased stiffness/pain in my hands and wrist over about 3 months (shots 5-8) but I decided on the 9th. Mainly because of the advantages of Evenity to strengthen my bones I really wanted to complete the 12 months. Well, 3 days after the injection #9 the stiffness started up again and the pain in my hands/wrists has increased so I will be discontinuing it. Though I won't have the 12 months I'll have 9 months of gains which is good and will follow up, probably, with Reclast.

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@ann707

Follow up I posted this in the other forum but decided to include it here. I took 8 shots but was having increased stiffness/pain in my hands and wrist over about 3 months (shots 5-8) but I decided on the 9th. Mainly because of the advantages of Evenity to strengthen my bones I really wanted to complete the 12 months. Well, 3 days after the injection #9 the stiffness started up again and the pain in my hands/wrists has increased so I will be discontinuing it. Though I won't have the 12 months I'll have 9 months of gains which is good and will follow up, probably, with Reclast.

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I also have commented here I only tolerated 8/12 months. Fatigue, brain fog and feeling “down” went away after a month off. Then I relayed w a Reclast infusion.
Feel better on Reclast- no brain fog but still some fatigue.
I had a month between where I felt great so believe it’s medication related.

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What happens after a year of taking it...

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I’ve had 2 months of Evenity injections. Thankfully, with no side effects so far. I am a healthy 59 year old female that is an avid exerciser and healthy eating guru. No idea if that has helped with the zero side effects….
The course of action is 12 months of shots, with a bone density dexascan to follow. I have 10 months to go. Hopefully, it will show improvement. Because the drug is new, I did have some reservations, but have trusted my endocrinologist as he wanted to use this to treat my osteoporosis.

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@lisabea

I’ve had 2 months of Evenity injections. Thankfully, with no side effects so far. I am a healthy 59 year old female that is an avid exerciser and healthy eating guru. No idea if that has helped with the zero side effects….
The course of action is 12 months of shots, with a bone density dexascan to follow. I have 10 months to go. Hopefully, it will show improvement. Because the drug is new, I did have some reservations, but have trusted my endocrinologist as he wanted to use this to treat my osteoporosis.

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Good luck!

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@lisabea

I’ve had 2 months of Evenity injections. Thankfully, with no side effects so far. I am a healthy 59 year old female that is an avid exerciser and healthy eating guru. No idea if that has helped with the zero side effects….
The course of action is 12 months of shots, with a bone density dexascan to follow. I have 10 months to go. Hopefully, it will show improvement. Because the drug is new, I did have some reservations, but have trusted my endocrinologist as he wanted to use this to treat my osteoporosis.

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I’ve got a few years on you at 66 but we seem to have a similar story. My Mom was osteoporotic and I know she took fosamax but no fractures. Sadly she passed 6 years ago. i’m in the lo -3.s on my dexa but i’ve had 4 separate fractures over 10-12 years. All pretty foreceful athletic falls. off bike into a ditch (rib) and off a trail (rib) and each wrist. one from an extremely hard fall from a couple steps on fall. And the last one was while hiking in MT, I looked backward to check on hubby and lost balance. I think my foot hit a rock and I fell very very hard smashing wrist onto rock causing intra articular fix needing plate and
pins. I think I got wrapped up in my hiking
pole strap. The
point being it was not just a little fall and that was september 2022. I had just gotten my Dexa results in early September and wanted to research before meds. Well I ended up on Evenity after seeing 2 endocrinologists one being an integrative endocrinologist since I knew I didn’t want meds. I thought she would agree with my plan to continue my healthy lifestyle and excellent fitness regime but after a long consult her first comment was let’s see what the best drug for you is. She also agreed with evenity. My husband practices Primary Medicine and he also agrees. So I have #3 tomorrow and am
doing okay on the Evenity. i kept arguing my fractures weren’t fragility fractures but no one was buying it. With my Dexa results I figured I had to address. And I want to stay active and avoid hip and back fractures as I age and stay active. My doc said no to TBS score since I already had fractures. I thank everyone for their stories as we all go down this road to adjust our treatment plans. i’m hoping there is some good info for those who complete evenity. What happens afrer 12 months?? might we extend another 6, what about reclast.?? Tymlos??? Time will tell but thanks to all for the sharing of stories. I have read Keith McCormicks book. I love Margaret Martin and the melio guide. Best of luck to everyone and please keep sharing!!

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