How did you manage the pain side effects of Prolia?

Posted by pine4234 @pine4234, Oct 26, 2018

I had prolia injection a week ago. I've developed lower back pain and severe spasms. The spasms are so bad I can hardly get out of bed or even out of a chair. Is there anything I can do or take to alleviate this awful pain.

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@twocents

I am new to this group. My doctor just prescribed Prolia, but with all the side effects, I'm not sure that's the way to go. In reading all of the discussion on Prolia, I haven't seen anyone share their results. I'm wondering if anyone has actually improved their bone density by having the prolia injections. Thanks

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My last bone density xray showed that I now am low risk. after about 2 years on Prolia. However, I am increasingly worried about the side effects. Especially, I am experiencing rapid hair loss, one of the possible side effects. I am seriously considering discontinuing the injections.

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@badtothebone

My last bone density xray showed that I now am low risk. after about 2 years on Prolia. However, I am increasingly worried about the side effects. Especially, I am experiencing rapid hair loss, one of the possible side effects. I am seriously considering discontinuing the injections.

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Don't just stop without talking to your doctor first. Without a backup plan in place you are at risk for fractures. You lose what you have gained once off Prolia.

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Has anyone had severe jawbone infection? I have dealt with this almost 6 months with part of the time wasted by doing dental surgeries to solve the problem. This has been very serious and a result of taking Prolia for cancer prevention along with a cancer medication. It seems now I find out my bone density was fine and didn’t need Prolia.

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I was given Letrozole and Prolia injections as a cancer prevention after having had breast cancer a second time. I have had a rare side effect of Prolia which is a severe jawbone infection for 6 months. Has anyone experienced that?

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Hi @kay71 you may have noticed I moved your posts to this existing discussion on the side effects of prolia so you can see what others have experienced with prolia. Simply click VIEW & REPLY in your email notification to get to your post.

@ritafarmer, @mabel343, @kenzreggie, @bonnieh218, and @tessie may be able to offer you support as you deal with these side effects.

Are you in pain from the infection in your jawbone?

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@ethanmcconkey

Hi @kay71 you may have noticed I moved your posts to this existing discussion on the side effects of prolia so you can see what others have experienced with prolia. Simply click VIEW & REPLY in your email notification to get to your post.

@ritafarmer, @mabel343, @kenzreggie, @bonnieh218, and @tessie may be able to offer you support as you deal with these side effects.

Are you in pain from the infection in your jawbone?

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The pain has been over the top and no one could figure out what was wrong for months. They just couldn’t believe it was Prolia. They finally sent me to a infectious disease doctor that had dealt with this before. I have been taking 875mg x 2 times a day of Augmentin for 4 weeks and finally better. I have good bone density which makes me question. It was given for prevention by oncologist because of a cancer medicine. I’m starting over with new doctor and never taking this drug again. Many bad side effects!

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@msdot281

@pine4234: I've been on Prolia for about 5 years now. I had and (based on the pain that I still have) currently have bilateral sacral insufficiency fractures and bilateral pubic insufficiency fractures; I roll over and my bones crunch. However, my bone density tests come back normal. My Rheumatologist said that the fact that I have the insufficiency fractures indicates I have osteoporosis. The only side effect I have, which is becoming increasingly problematic, is severe mouth ulcers. I find myself dreading my next shot in about a week because the ulcers are so painful and will stay around until about 3 weeks before the next shot. I can't eat fruit, fresh or canned or frozen, or anything even remotely acidic or spicy so long as I have the ulcers. Mr doctor increased my folic acid so that I now take Leucovorin, but it still doesn't help much.

Pine, I hope you don't develop this or any other side effect. But for the rest of the forum, does anyone else have this problem? If so, do you have any helpful remedies? Thanks!

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My severe jawbone infection started with ulcers on my gum..

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@kay71

My severe jawbone infection started with ulcers on my gum..

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I as so glad you spoke up. I was on the verge of starting Prolia, but checked in with a support group for osteoporosis on Facebook. They put me in touch with two women who had full-blown osteonecrosis. They told me they lost use of their jaws and the osteonecrosis was now attacking other bones! The next time I saw my endocrinologist, I told her I would not take Prolia. She got up and walked out of the room. Needless to say, I will be looking for another doctor to work with me on bone health. I hope you will alert others to what happened every chance you get. Those bone drugs are poorly studied and have little redeeming features once you study them. I am now studying nutritions books such as "Advance Nutrition: Macronutrients, Micronutrients, and Metabolism" by Carolyn D. Berdanier and Janos Zempleni in my quest for knowledge on how to help my bones. There must be a better way - and I think it can be addressed with diet. I wish you all the best luck with your cancer treatment.

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I am so sorry. There is a support group on Facebook called Osteoporosis Natural Remedies that may have answers for you. The reason I did not take Prolia is that the drug supposedly works for six months - I hope your side effects do not last that long. If I come across anything to help you in my research, I will come back here and let you know right away. Have you tried things like a muscle relaxer, perhaps vitamin D3 and magnesium? Also, I don't know if it would be effective, but you could try activated charcoal (I always take activated charcoal if I have taken something that causes unwanted side effects). Maybe contact the drug manufacturer and doctor and ask for an antidote.

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@kay71

The pain has been over the top and no one could figure out what was wrong for months. They just couldn’t believe it was Prolia. They finally sent me to a infectious disease doctor that had dealt with this before. I have been taking 875mg x 2 times a day of Augmentin for 4 weeks and finally better. I have good bone density which makes me question. It was given for prevention by oncologist because of a cancer medicine. I’m starting over with new doctor and never taking this drug again. Many bad side effects!

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OMG I forgot to mention CBD - get a cannabis CBD (not hemp - hemp is not nearly as effective). I take a 20:1 strength CBD oil (20 parts CBD to 1 part THC - the THC is necessary to get the CBD working - but it is such a small amount, you will not feel it). CBD has given me more relief from pain than oxycontin or tramadol. I take about 10 mg every 6-8 hours when I have bad pain - but you could take any amount. You cannot die from an overdose of anything cannabis-related (although an overdose of THC ma. make you wish you would die in the short term!). CBD does NOT get you high but it is very effective at dealing with pain. The one side effect I have sometimes with CBD is acid reflux from the oil it is suspended in. If that happens to you, try freezing the capsules before you take them - that seems to help. Also, take a good vitamin C. I will keep you posted as I learn more. I am not a doctor and you should make up your mind what you feel is right for your body. I'm just telling you what I am hearing from other women who have been down this road and what I am learning for myself.

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