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No improvement in Dexascan after 11 months on Evenity
I'm scanning these posts and can't find results like mine. I'm a 57 year old marathon runner who had parathyroid disease diagnosed and surgery removing 2.5 glands(could only find 3 glands)in 2019. By the time of that diagnosis, I had several stress fractures in my legs and arm over 10 years with blood Ca up to 10.6 (my internist missed this).
My endocrinologist waited to see my dexascan results for a year after my surgery before starting Evenity. I just got my last set of shots today but my dexascan yesterday showed no improvement in lumbar spine -2.9, or femur -2.3, TBS =1.264 and a loss in my arm now -2.9 (0.721 last year, 0.623 yesterday).
I see my endocrinologist at the end of the month for my next steps. This is not what I was expecting. I am very active and make concerted efforts daily to get miles of weight bearing exercise (either walking or running). I have always been healthy weight and a vegetarian who loves her dairy products.
I had no issues getting the Evenity. Had occasional swelling at the sites on my arms but not every month. I am shocked to see I had no response and wonder if there are others out there?
Thanks.
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Trying to sort this reactions and come across your statement. After 1 year on EVENITY no bone growth ? What will you do now ?
They should have checked by 6 months to see if the Evenity was working at all. There are blood tests for that. Sorry you went through the expense and time of Evenity without any results. Hoping you find something that works for you.
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3 ReactionsAsk them to run the Dexa scan again. The machine could have malfunctioned. The images they are looking at could have become corrupted on their computer. It simply makes no sense.
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1 ReactionI am sorry to hear about your experience. Another dexa scan might be worth it. There are lab tests that will tell them if the meds are working. Not all endocrinologists do these for some reason. Even my Stanford endo did not order them however my primary care doc did. I also see Dr Keith McCormick that many of us here see. He is Stanford trained and had severe osteoporosis himself years ago and took forteo. His knowledge of osteo is impressive and you can buy his blood Great Bones and schedule a phone call with him. He will want copies of your labs and dexa. His entire life is helping people with osteoporosis and he attends all the best conferences on osteo so he is always up to date with the latest info. He treats people from all over. He is the most positive and compassionate doctor. Look him up online and read his story about his journey with osteo. His fee is minimal and I highly recommend him. One other thing that is crucial to bone health is protein. I also see a functional nutritionist out of the Cleveland clinic and both her and Dr McCormick tell me protein protein protein. I eat chicken or fish along with bone broth three times a day. They say you have to have that to help the bones otherwise the meds won’t be able to do their job. No telling if that is what happened with you but it would be good to look into every detail possible and get a second opinion.
All the best to you.
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3 ReactionsI'm so sorry to hear this. It must be incredibly disappointing and upsetting for you. Some questions for you, and you may have asked/answered all of these but just throwing it out there in case...
do you know if you were placed correctly on the dexa device? Were your feet turned in and strapped to a block and was this performed by a densitometrist on the same dexa machine as previous scans? Have you redone your PTH tests to make sure the remaining portion present of your parathyroid gland is not malfunctioning? Have you tested for thyroid disease, celiac or gluten intolerance to see if there are any malabsorption issues?
Best to try to narrow down cause (which most docs chalk up to genetics like mine has which I just don't agree with) but in the meantime, something you might consider is bioidentical hormones to at least stabilize your loss. I was 57 when diagnosed, exercised (dancer) and nutritionally conscious and was shocked to find I had lost so much bone. I was reluctant to go on hormones having been mislead by the WHI studies which they now know was a poorly designed study with a grossly misrepresented result. The tide is really shifting favorably towards hormone replacement. I ultimately went on Forteo which nominally worked for me and then hormones at 62 to stabilize. I wish I had gone on hormones much earlier.
This may be a bridge to far but would you consider a carnivorous diet? This may not apply or work for you so just ignore if that's the case but research shows that vegetarians are known to have weaker bones than carnivores and a greater difficulty meeting protein needs. The RDA recommendations for protein are the minimum needed not what is optimally needed, particularly as we get older. A tool to use to track your nutrition is cronometer.com. It's free and easy to use. You plug in everything you eat in a day and you can then see if you are falling short so that you can supplement appropriately.
I hope you are able to find the root cause of this. Wishing you all the best.
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1 ReactionI had to have a blood test before each Evenity shot. I have completed 12 shots but can't get a dexa scan until April 2024 per my physician unless I want to pay for the expensive scan.
Correction I don’t have bone broth three times a day. Just a good protein. Bone broth a few times a week.
I recently had a DEXA scan after only 5 injections. My MD put " Medically Necessary" for it to be covered. If not the Women's Center that I go to ( which is connected to a hospital) said it would have charged me $125 plus the Radiologist fee for reading it. Just a thought. Are you taking any medication at the moment? If you did get any gains from taking Evenity you will need to " lock in" the gains with another medication soon after ending Evenity.
In terms of how much protein you need in grams per day. Take your weight divide it by 2 . Now divide that by 3 meals a day.
Example:
120 lbs divided by 2=60 grams per day needed
60 grams divided by 3 meals = 20 grams per meal
Thank you so much.
That’s about how much I weigh these days and just about how much protein I eat. I feel better when I have it three times a day. I can’t drink coffee or tea so the protein gets me going in the morning.