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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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@windyshores I am always glad to be reminded of your wonderful gains! May they continue!
My femur neck is still a problem after Tymlos though- it went from -4.1 to -3.6 on the left. The right side isn't as bad. My reports all say not to use femur neck to assess change, and I have read it is not reliable, but hey, clearly it's not good. This is the reason I requested Evenity after Tymlos. I talked to my doc about getting hip pads in the winter and he did not laugh- he said it was a good idea! Cancer meds really did me in!
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3 ReactionsI have been reading and reading comments on here and other sources to try to figure out what is best for me. Evenity or Tymlos. I think I will go with the Tymlos for a couple of reasons. If Tymlos doesn’t work for me, I can likely go to evenity. If I don’t tolerate Evenity I don’t think I would be able to go on Tymlos but would need to go on a bisohosphonate. Is this correct?
I have called Dr. McCormick for an appointment and they will not make the appointment until they receive all of my lab reports and dexas. They are also booked out until June. So do I move forward with Tymlos since it would be 3 months before I can get an appointment? I still want to see him as I have other issues, celiac and hypothyroidism, which probably contributed to osteoporosis and need to get my gut in better condition.
I looked again at this study:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8085670/
Scroll down for a comparison of Evenity effects after Forteo, Prolia or a Bisphosphonate- or as a first treatment. The results for Evenity after Forteo are very positive. The hip improvement at 7.5% at 12 months is better than the 5.9% for those who have never taken a med before. Spine improvement is almost as good.
So you can do Tymlos, which is similar to Forteo, and then do Evenity . My docs keep saying there is no data on this and I am the only patient in their practice doing this, but others have posted on this forum about this sequence. Check with your doctor!
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1 ReactionThank you. If I did evenity first and couldn’t tolerate would I be able to go on Tymlos
Should I wait to start treatment until I can get an appointment with Dr. McCormick?
Not sure how much my doc knows about the meds. I have looked up several endos in my area and the reviews are not good. My doc is a rheumatologist and quite nice and told me I could do basically what my insurance will cover.
@bluebonnet242 how many Evenity sessions did you have? I don't know the answer to this. Can you ask your nice rheumatologist to research this? It may depend on how many Evenity treatments you had. I would also ask if you should wait 2-3 months between Evenity and Forteo.
I haven’t done any osteoporosis meds yet. Was just trying to decide between Tymlos and Evenity and the sequence. Sorry I didn’t articulate that well:)
Do you think I should wait to begin my treatment until I talk to Dr McCormick even though I won’t see him for at least 3 months.
I chose to do Tymlos first because I was told, at the time, I could do Evenity afterwards but not the other way around. Then again a lot of people seem to be going on Evenity directly. Whether to wait or not would seem to depend on how bad your bone situation is! Neither choice is a bad one. But I am grateful I did Tymlos because the dose was adjustable and the drug leaves the body quickly so I could tolerate it. Many tolerate Evenity too.
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1 ReactionMy hip (right) is -3.8; AP spine is -3.1 and femoral neck (right) is -2.4. I’m guessing -3.8 is severe.
I do not have a dexa of both hips. Dexa was previously done on left hip in 2021 but I fractured it in November so they had to do the right. Do most of you get dexa for both hips?
So many questions! Should I at least go ahead and get the ctx and P1NP test done?
The decisions are so difficult and I’m so grateful for the support. I know some of you are going through so much more than I am so I appreciate the replies.
@bluebonnet did you fracture your hip?
Sometimes I have had DEXA's of both hips and sometimes one. If you fractured, that will affect the DEXA so they have to avoid scanning that.
Hope you are doing okay!