Help my mom can’t do anything after prolia shot

Posted by lindsaydawn @lindsaydawn, Mar 20 10:51pm

Can someone PLEASE HELP & give me advice?? My mom has always been active in 70’s walking 3 miles daily and got around GREAT but diagnosed w/ Osteoporosis. She still kept walking fine & was just careful. Her doc convinced her to get the prolia shot and hasn’t been able to function or even get out of chair hardly. She can’t get out of bathtub without struggling for awhile. She’s in soooo much constant pain & hasn’t slept hardly any in 3 months. THIS IS NOT HER! She always had perfect health (nothing broken, no surgery, nothing) & this shot has destroyed her. Terrible joint pain & she can’t even function. Heavy chest/panic attacks, It’s ruining her life. The pain doesn’t even ease up in her body. She can barely get in/out of bed. She was sooo strong before this shot! Doc said other patients had success with it and it couldn’t be the shot 🤷‍♀️🤦‍♀️ Now I found about 100 horrible reviews online like this but couple years old & no one answered me. Her office called and cancelled her next appointment because they said her doc left the state & they can’t get new one in for her that day & will call back when they can get her in! That was weeks ago. We call & call to see if any updates/cancellation but nothing.. We live in WV so not many docs here & all seem clueless. Can anyone PLEASE help her & advise what to do? Pain pills aren’t helping & she’s going to destroy her stomach w/ them, she’s in so much pain. She shakes all over, Hospitals send her home. The doc says try something new but she goes home & NOTHING HELPS. We have no docs here who have any understanding of this. PLEASE tell me how to help her. She’s in constant misery & she’s toughest person I know. I’ve never seen her sick until now 😫🙏❤️ she’s in 70’s—how much longer will she hurt? It’s been weeks. Prob 3 miserable months. She said she’d rather be dead than get this shot again. I’m really scared guys. She never complains of pain until this. Thx in advance for any input. I can’t get her off heating pad & she has burns but don’t care she’s so miserable 🥲 I’m so scared.

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

Maybe you can get a virtual consultation with an expert outside of your area. You could try a Dr Alana Serota at HSS in NYC. She is a metabolic bone disease doctor , she’s an endocrinologist and has an internal medicine background.

Or try for a consult with any metabolic bone disease doctor( most likely an endocrinologist) at a big teaching hospital.

Good luck, I really hope you reach someone who helps!

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So sorry to hear of this situation. Your distress is palpable.
It is painful watching someone you love in such pain and not be able to do 'something' to help.
You are on the right track in reaching out to others. I am not in the states so can't help with practical advice, other than, I wonder if a Mayo Clinic would be helpful. It may take some travel time, but getting your mom seen is the priority.
Please know that just your presence and your effort at caring for her is beyond price. You both are in a crash course of how to navigate the medical system. Not for the faint of heart!
The old adage of "the squeaky wheel gets the grease" is true. I encourage you to get on the phone and phone any clinic that seems a possibility; a teaching hospital is usually the best bet. [from what others have said here, Mayo Clinic may be able to point you in the right direction, if not actually see your mom]. Give them a call and have a chat.... and beg if necessary!
I'm cheering you on from the sidelines! Keep going! Don't give up!! You are doing so well! - even if it doesn't feel like it!
Soldier on! Let us know how you get on.

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I would encourage you to report this to the FDA. "You may report side effects to FDA at 1-800-FDA1088". They may call Amgen with your permission. Either or both may follow up with your doctors.

This is what I was looking for but could not find.'
To report SUSPECTED ADVERSE REACTIONS, contact Amgen Inc. at
1-800-77-AMGEN (1-800-772-6436) or
FDA at 1-800-FDA-1088 or
http://www.fda.gov/medwatch."

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@lindsaydawn your mom has made the right decision not to take any more shots of Prolia. She will start feeling better eventually, after the Prolia has worn off her system. In he meantime tell her to avoid any dental surgery, as Prolia is known to cause jaw necrosis. She should wait at least a year before having any dental work like tooth extraction, etc. Regular cleaning is fine.

I was talked into taking the Prolia too and felt quite unwell after that shot, although not as bad as your mom. I just refused to take any more shots. Apparently the more shots you take, the more you are at risk of fractures after stopping. Stopping after that first one is better.

Fortunately my bone scan has shown no fractures, four years after stopping Prolia even though I am at risk for osteoporosis. I am just very careful not to fall.

There is a Facebook group on Prolia which you may want to check out, if you are on Facebook. Some horror stories shared there!

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Even after only 1 prolia shot you need to relay off with some other bisphosphonate med because there is a rebound affect which causes more bone loss. Follow “prolia side effects support group” FB which has lots of information. I’m in the same age group and almost said yes to the shot but so glad I researched myself bc dr was so in favour of the 6 monthly shots. Telling me side effects are rare…. NOT TRUE

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lindsaydawn,
your mom may have three more months of this though the effects should start to wane. I'm so glad you are there to help her. If you can keep her moving she'll be better off later, because with any adult but especially with osteoporosis six months of inactivity can be devastating. The best drug for the pain is tylenol, but it isn't very good. She's burning her skin because the skin carries signals to the brain faster and she prefers the burning. Massage would help if she can stand the contact. Hand held massagers can be a distraction. Any of the psychotropics will generate a whole new set of problems.
The way the drug works is to prevent the cells that break down bone from developing. But these cells collect just waiting until the drug leaves your system then they attack the bone with vengeance. So the relief in three months holds a danger.
I suspect that part of what she is experiencing is an allergic reaction. I would try one of the antihistamines, but watch to see if it does help, because those medications also can present the hazard of imbalance and confusion.
Ice might also help mainly because it can be numbing.
Make sure she knows that the drug is leaving her system day by day.
Some people have success with Prolia. But I don't like anything about the drug and wish it would be taken off the market by the FDA. Instead they have approved a generic.
Rhorich includes the important information that your Mom has to take something following Prolia.
I'm so sorry this is happening. Please keep us posted on her progress. And convey to your mom our heartfelt wishes for the speediest return of her health.

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@rashida

@lindsaydawn your mom has made the right decision not to take any more shots of Prolia. She will start feeling better eventually, after the Prolia has worn off her system. In he meantime tell her to avoid any dental surgery, as Prolia is known to cause jaw necrosis. She should wait at least a year before having any dental work like tooth extraction, etc. Regular cleaning is fine.

I was talked into taking the Prolia too and felt quite unwell after that shot, although not as bad as your mom. I just refused to take any more shots. Apparently the more shots you take, the more you are at risk of fractures after stopping. Stopping after that first one is better.

Fortunately my bone scan has shown no fractures, four years after stopping Prolia even though I am at risk for osteoporosis. I am just very careful not to fall.

There is a Facebook group on Prolia which you may want to check out, if you are on Facebook. Some horror stories shared there!

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Thank you for the information. Hang in there. I'm trying alternative medicine. Wild yam cream per Dr Barbara O'Neill. Sick of shots!

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I am sorry to hear this. I was on it for 5 years and never had issues. These drugs seem to affect people differently. Hope she gets some relief.

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@sbcher

Thank you for the information. Hang in there. I'm trying alternative medicine. Wild yam cream per Dr Barbara O'Neill. Sick of shots!

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@sbcher how do you use the wild yam cream?

You are fortunate to find a medical doctor who is open to alternative medicine. In Canada naturopathic remedies are not supported by our government health plan or medical doctors. Big pharmaceutical companies and the government seem hand in glove.

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@sandrac

I am sorry to hear this. I was on it for 5 years and never had issues. These drugs seem to affect people differently. Hope she gets some relief.

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Sandrac, may I ask what your procedure/steps were to go off Prolia? I’ve been on it for 6 years with no major problems, just some pain in my arm after the injection.

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