Reclast side effects

awfultruth, So sorry to hear that your wife has Parkinson's. I will send some prayers her way. Wish I could do more. I have a good friend with Parkinson's, and it's a horrible disease. Don't need to tell you that, I'm sure.
Thanks for the advice to avoid tunnel vision. It's strange that none of the doctors who said "No. Not Reclast." even suggested that I get tested for other problems. Made me think that they knew it was the Reclast, but didn't want to say. But after reading about your wife, I've decided that the next step would be to see a neurologist, if for no other reason than to rule out other possible problems. I haven't seen a neurologist yet. They might have the answers that the endocrinologists, rheumatologists, and immunologists don't have. Here's hoping...

@dingus What a nice reply, thank you.
That is indeed interesting (and disappointing) that your docs did not make any suggestions about further testing or other doctors to try.
I did have another thought about trying to find help online. Have you tried other groups and forums? Facebook has a Reclast group and inspire.com has an osteoporosis group. I think Inspire calls it a community. I look at those sometimes and I have found ideas and info that I haven't noticed on Mayo. My "idea" to try risedronate or alendronate to follow Evenity instead of Reclast came from someone on Inspire. Good luck on finding a solution or hopefully those symptoms will just go away on their own soon.

gently,
Yes, I think she was impressed by the number of side effects and maybe also wondering about whether there was a connection to the bradycardia and the Reclast. Maybe I was the first patient on Reclast that she had seen.

windyshores,
Thank you for that reply. The bradycardia did get me admitted to hospital for one night. I had all the tests and they seemed satisfied and sent me home with a heart monitor which I’m still wearing. At the followup appointment with the NP, she did the deep Google dive into Reclast.
This is why I don’t say that I have no side effects to Reclast or Evenity or any of the other osteoporosis meds I’ve been on. I will say on this site that “I feel okay” or “I don’t seem to have any ill effects “ or “So far so good.”
Impossible to say what may be going on regarding long term effects or something they haven’t figured out yet.
I think I made the right choice to embark on Evenity and Reclast treatment. My mother had a spinal fracture that limited the last ten years of her life.

Yes. I will sign up for Facebook and Inspire. These chats are a great source of info. I've learned so much and I can tell that others have, too, just by the comments.

I had my first infusion 3 weeks ago and I am really struggling. I hurt all over, my moods and head space is not right. I wake up with a pounding pressure headache daily and not able to control it with otc pain meds. Not sure what's going on, but I'm scared, I don't feel right, my emotions are all over and anxiety through the roof. My dr never discussed side effects with me but at 44 yrs old and a -3.2 bone desensitized score, it was an emergency situation she said.

kell4042,
some have extreme reactions to Reclast "1%," they say. Some 30% have a miserable flu-like response that lasts for weeks, before resolving gradually. There isn't a good way to know your reaction before the injection.
There isn't a way of ridding your body of the medication. If you are extremely miserable someone can prescribe steroid. But steroid is terrible for you bones.
It is important that you contact the prescribing physician.
" When a special category of phagocytic T-cells, called gamma-delta T-cells, encounter the zoledronic acid, they engulf it, just like an osteoclast will engulf alendronate or zoledronic bound to the bone surface. And just like an osteoclast that engulfs a N_BP undergoes apoptosis (programmed cell death), the gamma-delta T-cells that engulfs a N-BP also undergoes apoptosis. The difference is, when a gamma-delta T-cell undergoes apoptosis, it releases inflammatory cytokines, such as IL-1, IL-6, and TNF-alpha, just like when it encounters a flu virus. And these inflammatory cytokines mediate the temperature rise and myalgias, just as with a flu infection in some patients."
This is how the doctor who ran the clinical trials describes the APR--accute phase rection. He advises he use of tylenol and an allergy med. He also says that a person is unlikely to have this reaction with the second injection. I say a person with this reaction is unlikely to have a second injection.
I'd sooner see you on an anabolic, Tymlos or Forteo. And do you have a diagnosis indicating why you have early osteoporosis. But for now, if you decide to weather these weeks call your prescriber. If you don't have an endocrinologist, you might get a referral. If it is completely unbearable, you can go to emergency where that could give you IV steroid.
I'm sorry you are having this miserable reaction. And I hope it resolves quickly, but let us know.

@kell4042 and @gently I have never seen this timeline before, as posted by @gently
" Some 30% have a miserable flu-like response that lasts for weeks, before resolving gradually. "
Three weeks is out of the usual timeline that I have read about for that acute phase reaction (APR). It is possible. But Reclast can have longer term side effects that are not part of that acute phase reaction, which I personally distinguish from the APR. I didn't mind 5 days of fever and myalgia (even on 20% dose that happened) - it's transient and less likely to happen again- but of more concern are effects over the next weeks and months for some few of us. Many do fine. (I am having GI effects, and increased tinnitus.) If you are having a longer acute phase reaction, that would be better because the symptoms do tend to disappear. Let us know!

Of more concern is why you @kell4042 were put on this in the first place. It seems your DEXA is low enough to qualify for an anabolic like Tymlos, Forteo or Evenity. Is there an insurance problem? The thing is, Reclast renders these anabolics less effective and many of us do Relcast after the others to "lock in gains."

A few things that came up on google:

https://www.ccjm.org/content/ccjom/85/9/675.full.pdf This one says APR dissipates in one week.

"Bisphosphonates, especially intravenous zoledronic acid, often cause influenza-like symptoms such as severe musculoskeletal pain, fever, headache, malaise, and fatigue, sometimes accompanied by nausea, vomiting, and diarrhea. As many as 30% of patients experience these symptoms, which are usually transient, last up to 1 week, and, in most patients, only rarely recur with subsequent infusions. "

Some statistics from that same article concerning Reclast only (see the full article):

"42.4% of the zoledronic acid group experienced symptoms that could be attributed to an acute-phase reaction after the first infusion.....most resolved within 1 week."

https://www.aafp.org/pubs/afp/issues/2008/0815/p508.html This one does say up to two weeks, which is longer than what I usually see.

Thank you.

Kelly A. McCollum

I wasn't given any options. I was seen by practice that had zero availability for the next yr bc one of the docs saw my scans, bloodwork and was very concerned that I would soon have a traumatic injury due to the weakness and my levels indicating such bone loss.