Evenity and side effects: What helps joint and muscle pain?

Posted by rjkesal123 @rjkesal123, Feb 13 12:40pm

Hi All,
I received my first Evenity injection two weeks ago. Everything was going well, did not even have injection site pain. But the last couple of days I have had joint and muscle pain especially in my neck and upper back, Lower back and arms. I've read the drug peaks around 7 to 14 days. I am wondering if this is normal, has anyone else experienced this and if these side effects subside? Is there anything you take before or after the injection to relieve this pain? It is very uncomfortable. Thank you!

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@songbird18

Hi, I got my first set of shots a month ago and felt the same way. I kept passing out for a few minutes and then waking up and then passing out again. I was so tired for the rest of the day I couldn’t even make dinner that night. In the couple of weeks after that first treatment I would get bad bouts of exhaustion but I’ve been having those on and off anyway so I’m not sure what’s the Evenity and what’s something else going on with me. I get my second set of shots tomorrow. I’m 53 with very severe OP (4.1 spine, 3.5 hips). The other symptom I’m wondering if anyone is experiencing is aching joints. My back and knees hurt even before Evenity but now my hips hurt too and my knees hurt more. My back already hurt a lot so that’s about the same. I hope that’s helpful. I’m grateful to everyone who shares on here because this is kind of a scary experience and it’s so helpful to hear what others have experienced. I’ve always been in good health so this has been a bit of a shock. Wishing everyone well!

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Yes, I agree with you concerning the sharing of information.
I follow a Sjogren's blog started by a female physician (also with Sjogren's) and it has been a lifesaver. When a male physician gaslights another physician with the usual 'calm down, it's your nervous condition, no, that is NOT the cause' .... you realize Sjorgen's is a condition medical schools fail to teach. Now I find myself in the same boat with Evenity - a drug tested on healthy people and has a book (small print) on adverse effects.

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@windyshores

That is the timing of my burning sensations as well. @jillgirl
So it is not immediate so not allergic-?

Perhaps those of us with autoimmune issues are more prone to these problems.

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Yes. Totally agree. When you are autoimmune, how can the medical establishment expect you to react as others with immune systems protecting them, unlike the autoimmune with systems trying to harm or even kill them. Their medical textbook answers do not apply to all patients. And we are corrected again and again.....
When I told the nurse about the facial problems her reply was, 'That can't be connected as it happened 3 weeks after the injection."

And without including autoimmune people in their research and clinical trials, the drug companies are harming many of us.

Wishing you the best.

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@jillgirl

Yes. Totally agree. When you are autoimmune, how can the medical establishment expect you to react as others with immune systems protecting them, unlike the autoimmune with systems trying to harm or even kill them. Their medical textbook answers do not apply to all patients. And we are corrected again and again.....
When I told the nurse about the facial problems her reply was, 'That can't be connected as it happened 3 weeks after the injection."

And without including autoimmune people in their research and clinical trials, the drug companies are harming many of us.

Wishing you the best.

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It is commonly known that Evenity side effects peak when the drug's action peaks, around day 12 for me, and some effects even occur as mineralization happens later on. That nurse doesn't understand how Evenity works.

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@windyshores

It is commonly known that Evenity side effects peak when the drug's action peaks, around day 12 for me, and some effects even occur as mineralization happens later on. That nurse doesn't understand how Evenity works.

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No, she doesn't. My other option is a 220 mile round-trip to the infusion center at my rheumatologist's office. I will probably be filling the gas tank soon ....

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@windyshores

@songbird18 Keith McCormick, the author of "Great Bones," told me that 40% of his patients on Evenity have joint pain. I am talking with him next week and will ask a follow-up question on how long this lasts after treatment, if it does.

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Thank you for this post. I suffered with nearly debilitating joint pain for months after my 6th month set of injections, especially my hips. I could barely get dressed in the a.m. My med professional did not believe it was from the Evenity as she said she had not had one patient tell her this (and "had treated thousands" with Evenity) which was very frustrating. I never had any pain before. I completed 11 mos as I tried to push through. I regret it now. I did get good gains in my spine but should have quit at the 6th month mark as most gains as I understand it are made in first six months. I still have some discomfort in my hips but now don't know what that is from. I would love to know if this is normal. My med professional did come around after a year or so and acknowledge that "maybe" it was from the Evenity. Best to you. Keith McCormick's book is helpful.

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@lauratys

Thank you for this post. I suffered with nearly debilitating joint pain for months after my 6th month set of injections, especially my hips. I could barely get dressed in the a.m. My med professional did not believe it was from the Evenity as she said she had not had one patient tell her this (and "had treated thousands" with Evenity) which was very frustrating. I never had any pain before. I completed 11 mos as I tried to push through. I regret it now. I did get good gains in my spine but should have quit at the 6th month mark as most gains as I understand it are made in first six months. I still have some discomfort in my hips but now don't know what that is from. I would love to know if this is normal. My med professional did come around after a year or so and acknowledge that "maybe" it was from the Evenity. Best to you. Keith McCormick's book is helpful.

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Do doctors read drug website list of side effects? From the Evenity website:
"The most common side effects of EVENITY® include joint pain and headaches."

I am annoyed when docs say things like "I haven't heard that from any other patients." I have burning and pins and needles and "pins and needles" and "paresthesias" are also listed on the Evenity website.

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@lauratys

Thank you for this post. I suffered with nearly debilitating joint pain for months after my 6th month set of injections, especially my hips. I could barely get dressed in the a.m. My med professional did not believe it was from the Evenity as she said she had not had one patient tell her this (and "had treated thousands" with Evenity) which was very frustrating. I never had any pain before. I completed 11 mos as I tried to push through. I regret it now. I did get good gains in my spine but should have quit at the 6th month mark as most gains as I understand it are made in first six months. I still have some discomfort in my hips but now don't know what that is from. I would love to know if this is normal. My med professional did come around after a year or so and acknowledge that "maybe" it was from the Evenity. Best to you. Keith McCormick's book is helpful.

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I’m not sure if Evenity has been out long enough for one practitioner to have “treated thousands.”
This is frustrating. I’ve been fortunate not to have noticeable side effects, but it does vex me when the nurse at the infusion center tells me that none of their patients have experienced any.

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@susanfalcon52

I’m not sure if Evenity has been out long enough for one practitioner to have “treated thousands.”
This is frustrating. I’ve been fortunate not to have noticeable side effects, but it does vex me when the nurse at the infusion center tells me that none of their patients have experienced any.

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I am glad that someone else also caught the "thousnds". That person sacrified all credibility when making that statement.

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I've had 6 total sets of 2 injections. It seemed to lessen after the first 2. Unfortunately I missed a month after 5 sets (March), and when I restarted in April, it seemed almost worse than the first time, but it got better more quickly, and didn't send me into a severe flare. I just had 2 spine surgeries in the last year and a half, so, for good or bad, I'm thankfully still on pain medications. I honestly don't know if I could stand the pain if I wasn't, as it's close to my severe Psoriatic arthritis flareups, which put me near 10. The first time, it set off a severe flareup, and I can say a methylprednisolone taper helped. This is just my experience, your mileage may vary. Best of luck.

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@hopefullibrarian

I had my third set of injections on Tuesday, and I am completely wiped out and so sleepy. For those of you who've had this side effect, did it start with your first injections, and did/does it happen to you with every set? Of course, it varies from person-to-person. I'm just curious to know.

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I'm fortunate that, so far, the side effects haven't been all that bad. For me the benefits are worth the minor discomforts and exhaustion. Not everyone is so lucky. For anyone who may be having more serious side effects, it's worth having your BTMs checked to help you decide if what you're going through is worth it.
Even though I'm feeling pretty good overall, if my BTMs indicated that Evenity wasn't doing much, I'd stop the treatment, and would spend the time and money on an alternative.
I had a CTx and P1NP done exactly 2 weeks after my 3rd Evenity injection, and I'm very pleased with the results, so I'll continue the treatment, and get the same tests again in another 3 months.
For anyone curious about the results I'll share them here along with Dr McCormick's reference ranges.
CTx = 355 (reference range 100-375)
P1NP = 102 (reference range 30-50)

Note: I fasted before the tests, had them done at 7:30 in the morning, and stopped taking collagen more than 48 hours beforehand. I don't take biotin supplements.

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