Hi @ingridbergman - Following Reclast with Evenity will reduce the results for sure, but you still should have seem some benefit. Attached is a chart that shows some trial data.
My primary care doctor has not had good luck with Evenity and I'm not sure why. I also had poor results, but I contribute it to my hypercalciuria. You can't make bone if you are losing calcium faster than you can absorb it from your diet. Have you checked your 24 hour urine calcium? Also, you might want to get your 1,25(OH)2D measured just in case something whacky is going on there. Get your phosphorus checked as well. Disorders of low serum phosphorus can also be an issue. A few things for you to check out.
Did you have any tests to find a reason for your hypercalciuria? Is this being treated in any way? I have the same issue with calcium, and my Dr is recommending Evenity or generic Fosamax. I wonder if I would respond the same way to Evenity (with no gains) with my high serum and urine calcium levels.
Did you have any tests to find a reason for your hypercalciuria? Is this being treated in any way? I have the same issue with calcium, and my Dr is recommending Evenity or generic Fosamax. I wonder if I would respond the same way to Evenity (with no gains) with my high serum and urine calcium levels.
Hi @ripley - I've had numerous tests but still no cause for my hypercalciuria. I tried all of the thiazides at one point and they did reduce urine calcium by about 40%, but I started having irregular heart beats (PVCs) so I stopped. My fault really because I was taking big doses and not enough potassium to compensate. On the positive side, I did have good results on Evenity after all. My initial DXA scan was messed up as they scanned L2-L5 by accident. Once corrected, my gains were good. So I think you still have a good chance of gains on Evenity, just make sure you are getting a lot of calcium daily. I was taking in ~1500mg/day to help compensate for the lost urine calcium. Good luck!
Hi @ripley - I've had numerous tests but still no cause for my hypercalciuria. I tried all of the thiazides at one point and they did reduce urine calcium by about 40%, but I started having irregular heart beats (PVCs) so I stopped. My fault really because I was taking big doses and not enough potassium to compensate. On the positive side, I did have good results on Evenity after all. My initial DXA scan was messed up as they scanned L2-L5 by accident. Once corrected, my gains were good. So I think you still have a good chance of gains on Evenity, just make sure you are getting a lot of calcium daily. I was taking in ~1500mg/day to help compensate for the lost urine calcium. Good luck!
Hi @michaellavacot , it is very nice to hear that your dexa scan mistakes were caught and that you had nice improvements after evenity after all, with pre-existing hypercalciuria! If you don't mind, could you share your bmd% improvements from evenity therapy?
There was a thread on this forum discussing whether supplemental calcium should be stopped temporarily before 24hr urine calcium test. Do you get calcium from food source or supplements? If from supplements, do you see an impact of the amount of calcium from supplements on urine calcium test results? Thank you
Hi @ripley - I've had numerous tests but still no cause for my hypercalciuria. I tried all of the thiazides at one point and they did reduce urine calcium by about 40%, but I started having irregular heart beats (PVCs) so I stopped. My fault really because I was taking big doses and not enough potassium to compensate. On the positive side, I did have good results on Evenity after all. My initial DXA scan was messed up as they scanned L2-L5 by accident. Once corrected, my gains were good. So I think you still have a good chance of gains on Evenity, just make sure you are getting a lot of calcium daily. I was taking in ~1500mg/day to help compensate for the lost urine calcium. Good luck!
I would also be interested about any side effects with the Evenity. After reading some of these comments, I am wondering if I should just continue with the Generic brand of Forteo, but had been planning on switching to Evenity after 6 months, as I have already completed 24 months of Forteo several years ago and was worried about risks of second course of it. Thanks for sharing your experience : )
Hi @michaellavacot , it is very nice to hear that your dexa scan mistakes were caught and that you had nice improvements after evenity after all, with pre-existing hypercalciuria! If you don't mind, could you share your bmd% improvements from evenity therapy?
There was a thread on this forum discussing whether supplemental calcium should be stopped temporarily before 24hr urine calcium test. Do you get calcium from food source or supplements? If from supplements, do you see an impact of the amount of calcium from supplements on urine calcium test results? Thank you
Hi @mayblin - Yeah, I have been pretty happy after figuring out they used L2-L5 instead of L1-L4. So I don't have an initial L1 BMD, but looking at the other scores, it looks like I have gained about 15% in the spine, 9% in the femoral neck, and 5% in the total hip. Attached is my spreadsheet for tracking improvements in BMD. One other note, I also was given DXA scores compared to an average male, which might make sense on the surface, but all of the fracture models are based on women, so for fracture risk and T-Score, men are supposed to use the women's scale. You'll see that called out on my spreadsheet.
One more thing I'm finding. Since the vertebrae are irregular in shape, the numbers bounce around a bit. For that reason, it is probably best to just look at the average L1-L4 number. You can see that after about 10 months on Prolia, I had two vertebrae with no gain and two gaining 8%. I know that is not reality so the average is probably the best number to look at.
So yeah, feeling pretty good right now and so far so good. I make sure to take in about 1500mg of calcium per day because I still have hypercalciuria to the tune of about 350mg.
Hi @michaellavacot , it is very nice to hear that your dexa scan mistakes were caught and that you had nice improvements after evenity after all, with pre-existing hypercalciuria! If you don't mind, could you share your bmd% improvements from evenity therapy?
There was a thread on this forum discussing whether supplemental calcium should be stopped temporarily before 24hr urine calcium test. Do you get calcium from food source or supplements? If from supplements, do you see an impact of the amount of calcium from supplements on urine calcium test results? Thank you
Hi @mayblin - To answer the second part of your question, I have tested both ways. I generally test while taking my regular regimen of calcium for the day, which might not be the right thing to do. But now that I'm on Prolia, I don't believe that stopping calcium is going to be accurate either because calcium is not going to be readily released from my bones. I waver on this a lot. It does effect urine calcium but not to a great extent I believe.
I take up to 1000 mg of calcium per day as supplements. 200mg with my breakfast cereal with whole milk, and then another 800 throughout the day depending on my diet. If I have cheese at lunch, I skip 400mg. Likewise for dinner. It took me some time to get into a consistent routine, but I welcomed the challenge. I'm the guy that numbers his water bottles to make sure he get at least 2 liters of water per day 🙂
No scans of the parathyroid gland, but listening to videos from the Norman Parathyroid Center, the scans are inconclusive. Dr. Bilezikian doesn't even use scans, he just uses calcium and other serum measurements. I also had an exchange with endocrinologist Dr. Deva Boone on my condition and she does not believe it's likely that I have a parathyroid gland issue. I wish it was that easy though. 🙂
Hi @mayblin - Yeah, I have been pretty happy after figuring out they used L2-L5 instead of L1-L4. So I don't have an initial L1 BMD, but looking at the other scores, it looks like I have gained about 15% in the spine, 9% in the femoral neck, and 5% in the total hip. Attached is my spreadsheet for tracking improvements in BMD. One other note, I also was given DXA scores compared to an average male, which might make sense on the surface, but all of the fracture models are based on women, so for fracture risk and T-Score, men are supposed to use the women's scale. You'll see that called out on my spreadsheet.
One more thing I'm finding. Since the vertebrae are irregular in shape, the numbers bounce around a bit. For that reason, it is probably best to just look at the average L1-L4 number. You can see that after about 10 months on Prolia, I had two vertebrae with no gain and two gaining 8%. I know that is not reality so the average is probably the best number to look at.
So yeah, feeling pretty good right now and so far so good. I make sure to take in about 1500mg of calcium per day because I still have hypercalciuria to the tune of about 350mg.
Hi Michael, thank you very much for sharing your treatment experiences and results. I'm happy for your improvements in spine and hip/fn as well! After some readings, I was in awe of the complexy in managing hypercalciuria. You might have come across Dr. F Coe's articles for idiopathic hypercalciuria. He answers many readers' questions/labs should one seek answers. Wish you continued success!
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Did you have any tests to find a reason for your hypercalciuria? Is this being treated in any way? I have the same issue with calcium, and my Dr is recommending Evenity or generic Fosamax. I wonder if I would respond the same way to Evenity (with no gains) with my high serum and urine calcium levels.
Hi @ripley - I've had numerous tests but still no cause for my hypercalciuria. I tried all of the thiazides at one point and they did reduce urine calcium by about 40%, but I started having irregular heart beats (PVCs) so I stopped. My fault really because I was taking big doses and not enough potassium to compensate. On the positive side, I did have good results on Evenity after all. My initial DXA scan was messed up as they scanned L2-L5 by accident. Once corrected, my gains were good. So I think you still have a good chance of gains on Evenity, just make sure you are getting a lot of calcium daily. I was taking in ~1500mg/day to help compensate for the lost urine calcium. Good luck!
Virtually none. Maybe a bit of fatigue on shot day but not so much that it ever prevented me from doing what I normally do
Hi @michaellavacot , it is very nice to hear that your dexa scan mistakes were caught and that you had nice improvements after evenity after all, with pre-existing hypercalciuria! If you don't mind, could you share your bmd% improvements from evenity therapy?
There was a thread on this forum discussing whether supplemental calcium should be stopped temporarily before 24hr urine calcium test. Do you get calcium from food source or supplements? If from supplements, do you see an impact of the amount of calcium from supplements on urine calcium test results? Thank you
Did you ever have your parathyroids checked out? (If you mentioned this before I missed it.) Thank you.
I would also be interested about any side effects with the Evenity. After reading some of these comments, I am wondering if I should just continue with the Generic brand of Forteo, but had been planning on switching to Evenity after 6 months, as I have already completed 24 months of Forteo several years ago and was worried about risks of second course of it. Thanks for sharing your experience : )
Hi @mayblin - Yeah, I have been pretty happy after figuring out they used L2-L5 instead of L1-L4. So I don't have an initial L1 BMD, but looking at the other scores, it looks like I have gained about 15% in the spine, 9% in the femoral neck, and 5% in the total hip. Attached is my spreadsheet for tracking improvements in BMD. One other note, I also was given DXA scores compared to an average male, which might make sense on the surface, but all of the fracture models are based on women, so for fracture risk and T-Score, men are supposed to use the women's scale. You'll see that called out on my spreadsheet.
One more thing I'm finding. Since the vertebrae are irregular in shape, the numbers bounce around a bit. For that reason, it is probably best to just look at the average L1-L4 number. You can see that after about 10 months on Prolia, I had two vertebrae with no gain and two gaining 8%. I know that is not reality so the average is probably the best number to look at.
So yeah, feeling pretty good right now and so far so good. I make sure to take in about 1500mg of calcium per day because I still have hypercalciuria to the tune of about 350mg.
Hi @mayblin - To answer the second part of your question, I have tested both ways. I generally test while taking my regular regimen of calcium for the day, which might not be the right thing to do. But now that I'm on Prolia, I don't believe that stopping calcium is going to be accurate either because calcium is not going to be readily released from my bones. I waver on this a lot. It does effect urine calcium but not to a great extent I believe.
I take up to 1000 mg of calcium per day as supplements. 200mg with my breakfast cereal with whole milk, and then another 800 throughout the day depending on my diet. If I have cheese at lunch, I skip 400mg. Likewise for dinner. It took me some time to get into a consistent routine, but I welcomed the challenge. I'm the guy that numbers his water bottles to make sure he get at least 2 liters of water per day 🙂
No scans of the parathyroid gland, but listening to videos from the Norman Parathyroid Center, the scans are inconclusive. Dr. Bilezikian doesn't even use scans, he just uses calcium and other serum measurements. I also had an exchange with endocrinologist Dr. Deva Boone on my condition and she does not believe it's likely that I have a parathyroid gland issue. I wish it was that easy though. 🙂
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1 ReactionHi Michael, thank you very much for sharing your treatment experiences and results. I'm happy for your improvements in spine and hip/fn as well! After some readings, I was in awe of the complexy in managing hypercalciuria. You might have come across Dr. F Coe's articles for idiopathic hypercalciuria. He answers many readers' questions/labs should one seek answers. Wish you continued success!