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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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Thank you so much for posting your btm numbers and Dexa results! I’m happy for you.
If I remember correctly, you cited a few days ago that evenity has effects on bone growth both during 1-6mo and during 7-12mo.
Wishing you continued success!
Which tests should I ask for following the full course of Eventy for 12 months. I don't think my doc is too thorough and is telling me I won't get results until a year after which seems a bit odd to me. He didn't see me for the entire year-only saw nurse for injections.
Hi @windyshores when you get a chance, could you clarify 4/2023 through 7/2023: which month is 18mo after tymlos? There might be some misprint. Just want to clarify. Thanks
@mayblin it's approximate. I indicated tests at 16 months (May) and 18 months (July). I did a few weeks in June 2021, then started again at a low dose that Sept., and probably reached a therapeutic dose in Nov. but I don't really remember.
It doesn't matter that much, Point is, I was past the active phase of bone building with Tymlos but continued through the rest of 2023 until I started Evenity.
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1 ReactionThank you very much windy!
One consequence of partial dosing is uncertainty about the duration of treatment 🙂 That is one reason why I recommend people move up to a therapeutic dose as quickly as possible! There may also be insurance issues if treatment is too long (there weren't for me actually- I went slightly over 2 years total).
After seeing my osteoporosis NP, we decided that I will stay the course with Evenity and repeat the bone markers in a couple of months. She also thought that perhaps the P1NP changed during the initial month and the fact that the CTX decreases so dramatically is a sign that its doing something.
I did full dose Evenity (two shots) for first month, then two months of half dose (one shot) and then 4th month was full dose (two shots). I am sorry to say that the very unusual side effect of burning, prickling, tingling all over has continued.
My goal was to do 4 months minimum. Bone markers did not show increased P1NP and CTX rose slightly, not what one would expect.
I am wondering if my previous two years on Tymlos affected the Evenity effectiveness. Who knows. I am the only patient in both my endo's offices doing Evenity after Tymlos.
There is a study on doing 6 months Evenity 6 months Reclast vs 12 months Evenity and 6 months Reclast, or something like that. I will do Reclast in 2-3 months.
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3 ReactionsI have had 7 injections so far and my hair starting falling out a few months ago. Not sure if I should stop treatment or just hope my hair grows back after the treatments.
I had my fourth injection of Evenity and my hair is falling out. I don't want to stop treatment. I am saving my pennies in case I need a wig. I had 2 years of Prolia before starting Evenity. Prolia has hair loss as side effect but I didn't notice any loss until I started Evenity.
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