1. < Osteoporosis & Bone Health

My Experience on Evenity for Treating Osteoporosis

Posted by arlene7 @arlene7, Jul 7, 2020

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.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

gmom14 | @gmom14 | 3 days ago
In reply to @firecracker "This group was very helpful for me when I was making a decision about starting Evenity..." + (show)
@firecracker

This group was very helpful for me when I was making a decision about starting Evenity a year ago. Like most of you, I had many concerns about the possible side effects. Now that I finished the 12th shot a few weeks ago, I am happy to share that the shots went very well and my bone growth was better than I had expected.
Previously I had taken Fosamax for many years, and Reclast for a few years. They slowed down the bone loss, but I was still losing about .1 in the spine, hip, and fermoral neck nearly every year or two for the last 18 years. I'm currently 72 and very petite. My doctor had told me I was the perfect target for osteoporosis.
With Evenity, I had no annoying side effect from any of the shots, though a few months I think I was slightly more tired the day following the shots. After about 3 months shots, I made sure that the shots felt room temperature each time so that they wouldn't sting. If they still felt rather cool, I would warm them in my hands. I also asked that the nurse inject the shots slowly because that seemed to help avoid any slight soreness the following day. I had both shots for the month in the same arm, then switched to the other arm the next month, then back to the first arm. I also drank lots of water,
After the second month, I had a blood test which showed my alkaline phosphatase was above the normal range. Concerned that it could indicate liver issues, I had an isoenzyme blood test which indicated the liver was not a concern. The bone component of the test was what was high, likely indicating that the Evenity was doing its job for the bone growth. The numbers all returned to normal by my next test a few months later.
The results of my recent DEXA show a T- score increase of 20.7% in the lumbar spine, an increase of 9.8% in the total hip, and 6.0% in the femoral neck. The spine is now in the normal range, the hip is osteopenic, and the femoral neck is still in the osteoporosis range, though slightly improved. I will be having a Reclast infusion in about 10 days.
I hope this positive information is helpful to someone in this group who may be facing the decision as to whether or not to start Evenity. For me, it was a wise decision.

Jump to this post

@firecracker Thanks for your positive comments!

REPLY
dooshie | @dooshie | 3 days ago
In reply to @firecracker "This group was very helpful for me when I was making a decision about starting Evenity..." + (show)
@firecracker

This group was very helpful for me when I was making a decision about starting Evenity a year ago. Like most of you, I had many concerns about the possible side effects. Now that I finished the 12th shot a few weeks ago, I am happy to share that the shots went very well and my bone growth was better than I had expected.
Previously I had taken Fosamax for many years, and Reclast for a few years. They slowed down the bone loss, but I was still losing about .1 in the spine, hip, and fermoral neck nearly every year or two for the last 18 years. I'm currently 72 and very petite. My doctor had told me I was the perfect target for osteoporosis.
With Evenity, I had no annoying side effect from any of the shots, though a few months I think I was slightly more tired the day following the shots. After about 3 months shots, I made sure that the shots felt room temperature each time so that they wouldn't sting. If they still felt rather cool, I would warm them in my hands. I also asked that the nurse inject the shots slowly because that seemed to help avoid any slight soreness the following day. I had both shots for the month in the same arm, then switched to the other arm the next month, then back to the first arm. I also drank lots of water,
After the second month, I had a blood test which showed my alkaline phosphatase was above the normal range. Concerned that it could indicate liver issues, I had an isoenzyme blood test which indicated the liver was not a concern. The bone component of the test was what was high, likely indicating that the Evenity was doing its job for the bone growth. The numbers all returned to normal by my next test a few months later.
The results of my recent DEXA show a T- score increase of 20.7% in the lumbar spine, an increase of 9.8% in the total hip, and 6.0% in the femoral neck. The spine is now in the normal range, the hip is osteopenic, and the femoral neck is still in the osteoporosis range, though slightly improved. I will be having a Reclast infusion in about 10 days.
I hope this positive information is helpful to someone in this group who may be facing the decision as to whether or not to start Evenity. For me, it was a wise decision.

Jump to this post

@firecracker. thank you so much for your post. Those are some great results from the Evenity. I have been hesitating to go on another medication. I was on Tymlos for 2 years with good improvement in my spine (15% and 3.5% in my hips). I completed that protocol in July and began bioidentical hormones at that time, mainly because I was severely lacking but my cardiologist felt my bones could benefit as well. My new rheumatologist is very concerned that if I don't get back on a medication, my bones could really suffer, so she wants me on Evenity. I understand that some women tolerate it well and some don't, similar to any drug. My biggest issue is that we travel between 2 homes, 6 hours apart on a regular basis and travel as well, so having to get into my docs office once a month, could present a problem. With the Tymlos, I was able to inject myself. So, I'll be praying about this big decision and see how it goes. Your post calmed my mind a bit so thank you again. Rose

REPLY
firecracker | @firecracker | 3 days ago

I'm so glad my post was helpful. I can understand your concern about traveling. That was actually the reason I didn't want to start Forteo or Tymlos! I didn't want the hassle of the injections while traveling.
Like you, we also split our time between two homes, spending only 3-4 months at one of the locations, in addition to several sightseeing type trips to other destinations each year. My rheumatologist had told me that Evenity has a website called Evenity Finder. By planning ahead, I was able to get the injections in our alternate location for months 4, 5, and 6 with no problems, then had the rest of the shots back at the initial location. I suppose it could be difficult if you were changing locations often, because the doctor has to put in a new order when you start the injections at a new location. I started that process about a month before I needed it. We planned our other trips carefully so that I would be home at the necessary time each month.
The other surprising thing to me about Evenity is that they have a copay program that will cover the costs if one is still on private insurance (vs Medicare) and have not yet met all the annual deductible on the private insurance. One's financial ability was not a concern. So Evenity/Amgen paid for my Feb, March, & April injections(which was a new calendar year, thus new deduction period, for our insurance) and those payments actually counted toward the deductible for our private insurance which seemed like a double bonus.
Even though I don't normally see a cardiologist, the other thing I did before deciding on Evenity was I asked my primary doctor to refer me to to a cardiologist just to ease my mind that the heart doctor wasn't concerned about the possible heart issues from Evenity. The heart doctor was not concerned.
Good luck with your decision!

REPLY
mayblin | @mayblin | 3 days ago
In reply to @firecracker "This group was very helpful for me when I was making a decision about starting Evenity..." + (show)
@firecracker

This group was very helpful for me when I was making a decision about starting Evenity a year ago. Like most of you, I had many concerns about the possible side effects. Now that I finished the 12th shot a few weeks ago, I am happy to share that the shots went very well and my bone growth was better than I had expected.
Previously I had taken Fosamax for many years, and Reclast for a few years. They slowed down the bone loss, but I was still losing about .1 in the spine, hip, and fermoral neck nearly every year or two for the last 18 years. I'm currently 72 and very petite. My doctor had told me I was the perfect target for osteoporosis.
With Evenity, I had no annoying side effect from any of the shots, though a few months I think I was slightly more tired the day following the shots. After about 3 months shots, I made sure that the shots felt room temperature each time so that they wouldn't sting. If they still felt rather cool, I would warm them in my hands. I also asked that the nurse inject the shots slowly because that seemed to help avoid any slight soreness the following day. I had both shots for the month in the same arm, then switched to the other arm the next month, then back to the first arm. I also drank lots of water,
After the second month, I had a blood test which showed my alkaline phosphatase was above the normal range. Concerned that it could indicate liver issues, I had an isoenzyme blood test which indicated the liver was not a concern. The bone component of the test was what was high, likely indicating that the Evenity was doing its job for the bone growth. The numbers all returned to normal by my next test a few months later.
The results of my recent DEXA show a T- score increase of 20.7% in the lumbar spine, an increase of 9.8% in the total hip, and 6.0% in the femoral neck. The spine is now in the normal range, the hip is osteopenic, and the femoral neck is still in the osteoporosis range, though slightly improved. I will be having a Reclast infusion in about 10 days.
I hope this positive information is helpful to someone in this group who may be facing the decision as to whether or not to start Evenity. For me, it was a wise decision.

Jump to this post

Hi @firecracker thank you for sharing your positive experience with evenity and congrats on your good results. If you don't mind, could you share the number of years that you were on reclast and how long was your holiday, if any, prior to evenity treatment? What about fosamax? Thanks a lot!

REPLY
firecracker | @firecracker | 2 days ago

Hi @mayblin I was on Fosamax for two years at 35 mg, then next 4 years were 70 mg (full strength).
I took an 18 month holiday before 5 more years of Fosamax. (A lot of Fosamax, I know.)
After another 1 year holiday, I had Reclast for 3 years.
Then another 1 year holiday followed by 1 more year of Reclast.
Finally, 1 year of Evenity. (No holiday directly before the Evenity.)
I hope this answers your questions.
The options other than Fosamax have certainly expanded in recent years.

REPLY
4 replies
windyshores | @windyshores | 2 days ago
In reply to @firecracker "Hi @mayblin I was on Fosamax for two years at 35 mg, then next 4 years..." + (show)
@firecracker

Hi @mayblin I was on Fosamax for two years at 35 mg, then next 4 years were 70 mg (full strength).
I took an 18 month holiday before 5 more years of Fosamax. (A lot of Fosamax, I know.)
After another 1 year holiday, I had Reclast for 3 years.
Then another 1 year holiday followed by 1 more year of Reclast.
Finally, 1 year of Evenity. (No holiday directly before the Evenity.)
I hope this answers your questions.
The options other than Fosamax have certainly expanded in recent years.

Jump to this post

@firecracker that adds up to 15 1/2 years on an anti-resorptive! Are you doing Reclast after Evenity? I wonder if all those holidays mean less risk (of atypical femur fracture, jaw necrosis) from doing more years of a bisphosphonate. Now they are saying to limit to 3-5 years but it seems unavoidable to do more than that given the need for bisphosphonates after other drugs. I am curious how thinking on this might be evolving: drug holidays enabling further use of bisphosphonates past 5 years.

REPLY
mayblin | @mayblin | 1 day ago
In reply to @firecracker "Hi @mayblin I was on Fosamax for two years at 35 mg, then next 4 years..." + (show)
@firecracker

Hi @mayblin I was on Fosamax for two years at 35 mg, then next 4 years were 70 mg (full strength).
I took an 18 month holiday before 5 more years of Fosamax. (A lot of Fosamax, I know.)
After another 1 year holiday, I had Reclast for 3 years.
Then another 1 year holiday followed by 1 more year of Reclast.
Finally, 1 year of Evenity. (No holiday directly before the Evenity.)
I hope this answers your questions.
The options other than Fosamax have certainly expanded in recent years.

Jump to this post

@firecracker i really appreciate that you share your experience in detail. Your bmd improvements from Evenity therapy are remarkable even after lengthy treatments of two bisphosphonates. Information regarding how well anabolics work after Reclast are relatively lacking from well designed studies, your personal experience sheds some light for those of us who are figuring out long term treatment planning. Thanks again and best wishes.

REPLY
pami | @pami | 1 day ago
In reply to @firecracker "This group was very helpful for me when I was making a decision about starting Evenity..." + (show)
@firecracker

This group was very helpful for me when I was making a decision about starting Evenity a year ago. Like most of you, I had many concerns about the possible side effects. Now that I finished the 12th shot a few weeks ago, I am happy to share that the shots went very well and my bone growth was better than I had expected.
Previously I had taken Fosamax for many years, and Reclast for a few years. They slowed down the bone loss, but I was still losing about .1 in the spine, hip, and fermoral neck nearly every year or two for the last 18 years. I'm currently 72 and very petite. My doctor had told me I was the perfect target for osteoporosis.
With Evenity, I had no annoying side effect from any of the shots, though a few months I think I was slightly more tired the day following the shots. After about 3 months shots, I made sure that the shots felt room temperature each time so that they wouldn't sting. If they still felt rather cool, I would warm them in my hands. I also asked that the nurse inject the shots slowly because that seemed to help avoid any slight soreness the following day. I had both shots for the month in the same arm, then switched to the other arm the next month, then back to the first arm. I also drank lots of water,
After the second month, I had a blood test which showed my alkaline phosphatase was above the normal range. Concerned that it could indicate liver issues, I had an isoenzyme blood test which indicated the liver was not a concern. The bone component of the test was what was high, likely indicating that the Evenity was doing its job for the bone growth. The numbers all returned to normal by my next test a few months later.
The results of my recent DEXA show a T- score increase of 20.7% in the lumbar spine, an increase of 9.8% in the total hip, and 6.0% in the femoral neck. The spine is now in the normal range, the hip is osteopenic, and the femoral neck is still in the osteoporosis range, though slightly improved. I will be having a Reclast infusion in about 10 days.
I hope this positive information is helpful to someone in this group who may be facing the decision as to whether or not to start Evenity. For me, it was a wise decision.

Jump to this post

Thank you for sharing your experience with Evenity. I too took Reclast prior to Evenity. I just had my 9th shots. I have wondered if being on Reclast first would affect my bone growth in a negative way.
Are there specific vitamins, collagen or foods you ate that may have helped?
Thank you!

REPLY
1 reply
firecracker | @firecracker | 1 day ago
In reply to @pami "Thank you for sharing your experience with Evenity. I too took Reclast prior to Evenity. I..." + (show)
@pami

Thank you for sharing your experience with Evenity. I too took Reclast prior to Evenity. I just had my 9th shots. I have wondered if being on Reclast first would affect my bone growth in a negative way.
Are there specific vitamins, collagen or foods you ate that may have helped?
Thank you!

Jump to this post

@ pami I take only a few standard over the counter vitamins, but eat a very healthy pescatarian diet. Also, I get all needed calcium from my diet so I don’t take that. I walk briskly at least 4 miles daily outside or on the treadmill, swim occasionally, and do some free weights and yoga. However, I’ve done all that for years so it wasn’t new for Evenity.
Good luck with the rest of your shots. I hope you will be pleased with the outcome! I’d love to know the results when you’re all done.

REPLY
pami | @pami | 1 day ago

Thank you! I will post my results. I am hopeful to have some improvement in my spine.

REPLY
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