Been going to rehab for my back, it feels OK for awhile then the pain returns. This has continued for over a year. My prescribing doctor says it is not caused by the prolia. I also have one kidney and celiac disease, she knows that as well. I have had 3 injections and after being in pain so long I want off, something is not right.
How do I get off Prolia, I am sure that it is causing bone pain?
Question posted by Linda T Williams on 10 Feb 2015
Last updated on 4 September 2021 by Janice Cox
The information on this page reflects personal experiences shared by our community members. It is not reviewed for medical accuracy and should not replace professional medical advice.
4 Answers
Janice Cox
4 Sep 2021
To me it do cause pain in different ways.Also swelling in feet and ankles for me.Will not take again.
jdlevin
9 Nov 2018
I had been on Prolia since about 2012 and it was slowing (but not stopping) bone loss. Because of a change in personnel at the medical center, My Prolia shot was delayed this past January, 2018, and when it was about a month late I had three painful vertebral compression fractures.
Now, over eight months later, I am beginning to get just a little of my former life back. The more I learn about Prolia now the more I want to get off of it, but I do not want to incur the pain and disability (some permanent) I suffered.
I am trying to find reliable information on how to get off Prolia SAFELY?
sara12345
11 Feb 2015
You are not the first person to attribute bone pain to Prolia. But it seems to me that it does seem unlikely to be felt just in your back. My bone pain is all over my body. And another woman complained about bone pain in her legs. You can just stop the Prolia, but if the pain is being caused by Prolia, then it may not go away right away with stopping Prolia. I am certain that my bone pain was caused by Prolia. It is getting slightly better, but still bothers me 2 and a half years later. You can list your problem with the FDA as a Mediwatch. Just go to the FDA website. If they get enough of the same complaints, then they will make the manufacturer list it as side effect.
sara12345
12 Feb 2015
Sorry, I didn't mean to imply that your claim that Prolia was not responsible for your back pain. It could be. Another way to report it to the FDA is to report it to the FDA hotline at 1-800-332-1088.
Linda T Williams
13 Feb 2015
I just made a general statement, not knowing what was going on in me, trust me I could make a much longer list of what my body is suffering. The side affect of Celiac and reaction to Prolia are much the same. I talked to my primary care doc. She stopped my rehab for back, neck & hip. Does not want me to take next injection of Prolia. I also have muscle pain, teeth hurt and my thyroid went crazy when I first started prolia? I feel and look 10 years older than I did 2yrs. ago. I do not complain very often but this has really been extreme and I need help, I take care of my husband's failing health, It is getting difficult to be a care giver!!! Thank for your help!
sara12345
14 Feb 2015
So sorry to hear about all your problems. I also have a lot of medical problems, but other than the skin inflammation and bone pain, I can't attribute them to Prolia. Although the first 8 months after the Prolia, I did have sky high levels of my parathyroid. And during the first month or more following Prolia, I had a lot of medical problems, which finally went away. But the skin and bone pain have lasted 2 and a half years since the one injection of Prolia. Perhaps your medical problems may get better with time too. Again, I encourage you to contact FDA about your side effects caused by Prolia. Wish you the best.
SHEsevEN4
15 Feb 2015
My Doctor wanted me to take Prolia, I said no because I was afraid of the side effects, he told me I had no choice, that's when I found another Doctor, you do have the right to refuse, then I called and spoke with a nurse at Prolia, she said anyone who already had medical problems she would not advise to take it, there are others.
sara12345
16 Feb 2015
To SHEsevEN4, That really amazes me that the nurse at Prolia told you that. I have a lot of medical problems. Did she have anything else to say? I tried to friend you, in case you only want a private conversation about it. Thanks so much for this info.
Rowe6520
2 March 2015
After my first injection, a month or so later... I started to feel the side effects gradually... I felt 30 years older getting out of bed every morning, achy, fatigued, numbing & tingling of my arms & fingers. I've lost about 8 pounds. It has been 6 months and this week I'm due for my 2nd shot and canceled my appointment. I know the side effects that I had cannot be the norm and am not going to go through the pain again. I will just continue doing my exercises of walking and yoga. And eat healthy while taking calcium supplements. I want to feel like I did 7 months ago where I was running and flexible. Not reduced to taking arthritis & pain medications do to the side effects of Prolia. I do not believe that doctors really understand how the Prolia side effects can be so painful. My doctors think that it is just the medication working and that is why I am in pain... that's where Doctors have not had the experience and truly know the after effects of Prolia.
It has only been on the market since June 2010 and I don't want to continue being the guinea pig.
sara12345
3 March 2015
To Rowe6520: Doctors would be more aware of the side effects if the FDA made the Proiia manufacturer to list all the side effects. This is achieved by people filing a Mediwatch with the FDA. It was told by someone else on this website that their hotline is 1-800-332-1088. Or you can file it online like I did by going to the FDA website. I’m still dealing with my horrible side effects 2 and a half years later after getting just one Prolia injection. If you need more help, please ask me. Wish you the best.
Zibaroo
29 March 2015
I got my first injection of prolia about 4 months ago approximately after one month of injection I started developing pain and stiffness on both side of my neck the pain got worse on the left side specially when I put my head down to sleep every morning I wake up with pain behind my head and ear during the night I can't move easily because of the pain behind my left ear. I went to see a neurologist and he suggested I get Botox shots for the muscle spasm in my neck and sent me to do am MRI of my brain . The MRI was normal and I finally got my first shot of Botox 3 days ago the effect takes about two weeks to take place . Meanwhile the pain in my jaw / behind my ear is not going away and I keep on taking Mobic and muscle relaxers. I am due for my next shot of prolia in June which I am gone cancel. My question is does anyone know how long these side effects last and when finally I will be pain free and have my life back ? I used to workout 3 to 4 times a week now because of all the pain killers I am always tired or in pain . Please help
sara12345
7 April 2015
First, give the Botox more time. And you may not get help with the first dose and may need a higher dose. Another procedure that could help you are nerve block and trigger point injections. In addition to my Botox injections, I also get these injections for my tight muscles in my neck and shoulders--not caused by Prolia. You should report your side effects to FDA, so that others are warned. Go on-line to report a "Medwatch" or call the FDA hotline at 1-800-332-1088. As far as how long the Prolia effects will last, it is anyone's guess. Hopefully, your side effects will go away long before mine which are still hurting me more than 2 and a half years later. I would definitely NOT get another Prolia injection. Wish you the best.
Prolia39
30 Aug 2015
I have had my 5th Prolia injection (6 monthly).
It has taken me until now to realise how my life has deteriorated over the last years since the 1st injection- so much pain, weakness, lack of energy and motivation , depression - just feel helpless so
much of the time - terrible fatigue, and I repeat - so much pain - also stomach discomfort- diarrhoea or constipation. I feel I am being robbed of what we're meant to be the last few years of my useful life (age 76).
HELP !
balbanese
10 Feb 2015
Despite the Dr's claims, if you want off he is obligated as your health care provider to help you stop it and help you do so in a way that will not harm you. Just ask for help getting off of it, you need this help from your own Dr and not an unknown in the internet. Best to you.
Related topics
osteoporosis, pain, rehab, prolia, bones
Further information
- Prolia uses and safety info
- Prolia prescribing info & package insert (for Health Professionals)
- Side effects of Prolia (detailed)
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