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My Experience on Evenity for Treating Osteoporosis
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.
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@arlene7. Just wondering, several years down the road since your original post, if you have any observations to share with us who are now considering Evenity?
Thanks1
I actually had my annual bone density test last week and gave my appointment with endocrinologist thus week. I will update later this week
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1 Reaction@madeleine40 I am almost done Tymlos and had 20% gain in spine, going from severe osteoporosis (-3.6) to borderline (-2.5). Hip improved 9% but femur neck is still a problem though much improved.
I am getting a 20% test dose of Reclast and then 3 months later will do the dose I choose. Probably a half dose of 3.5mg.
I could not tolerate Forteo at all and at first I could not tolerate Tymlos. But I regrouped and used the "clicks" on the pen to start at a lower dose and move up. I did mostly 6 or 7 out of 8 clicks but these last months I am doing full dose of 8 clicks of the pen.
It sounds like you did the full 80mcg and are not suffering too many side effects. Is that true? It may help you a lot!
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1 ReactionI didn’t know that taking Evenity longer than 12 months was an option.
I hope for great success for you. I just had my 8th injections yesterday of Evenity. I too have osteoporosis with fractures that just aren’t healing. I’m going on a year with a Jones Fracture and a “hip” Fracture, which is actually the femur but it’s up so high they consider it a hip fracture. Weird, I know.
So I have high hopes for Evenity to do some serious bone growth. I have not had any side effects from it other than my upper arms hurt for a day or so after the injection.
It’s nice to hear from someone else on this journey.
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2 ReactionsThank you windyshores and good for you to persevere.
I have not started Tymlos as my insurance has not confirmed coverage yet. I have severe scoliosis and need to make sure my bones stay strong. As they can’t do a dexa scan, I am also looking at the Echolight scan that can be performed on a compromised back, but it does not seem to be available on the west coast.
Will keep researching until I need to start treatment. Not looking forward to it, especially if I have to take something after 2 years. I did not realize this when my doctor suggested Forteo or Tymlos.
Just fyi the Reclast is not long term. It is just used to "lock in" gains from the Forteo or Tymlos.
I have fractures, arthritis and scoliosis so I get that DEXA's may not be useful in assessment but then again, maybe they would at least give an idea of change from baseline.
Yes. I agree that a baseline is always a good idea.
This is good news that Reclast is only short term. Thank you
Since your last post in 2020 can you share your results after taking Evenity? And what did you take after that?
HI
Thank you for sharing. Just took shot number 8 month
I wake up every morning same way. Can barely move and every bone in my body hurts. I'm going keep taking them.
One Month at time !!! I have already fell once broke my
femur. ortho doctor told me Thank Goodness you had
reclast several months Before!!!