Prolia Side Effects (Page 139)

I would like to know of any side effects others may have experienced after receiving Prolia infusions. Up to now I have none.

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Andrea (# 2759) --

Andrea,
For your own sake, forget a magic cure. It doesn’t exist. I’ve learned to live with the side effects from prolia, followed traditional medical advise( with reservations by not taking any more drugs) and using the few natural solutions that seem to ease my symptoms. Hopefully some day they’ll all disappear. In the meantime, I pass on the message to all those who will listen , to question every drug prescribed to them as “the answer” to their perceived situation. We have to educate ourselves and take control of our own health and not think that it’s only MDs who have the answers.
Good luck in your venture!

!

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Re: Lizzie (# 2753)

Lizzie, during my year of Prolia and in the following year I frequently experienced a sensation of being off-balance, and found myself concentrating hard whenever I went down steps. I was very scared walking down the front steps of the Sydney Opera House! I began to dread steps without a handrail. I occasionally took a slightly staggering step on a flat surface. There was no dizziness. Now I seem to have mostly recovered from this weird phenomenon.

I searched for any link between Prolia and balance issues or vertigo but found nothing then. Now it seems that others have had somewhat similar experiences whilst affected by Prolia. I searched again and found a journal article looking at links between osteoporosis itself and a condition called 'benign paroxysmal positional vertigo'. Loss of balance or unsteadiness can be symptoms.

It's all very peculiar.

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Dawn (# 2758) --

Check out Save Our Bones. It is an excellent program of diet and exercise and information regarding Osteoporosis.,developed by a dietician. It is also educational, particularly regarding Big Pharma. She also has a program to help clear this poison out of our systems.. This program has made a difference in my life.

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Judy (# 2760) --

Thanks, Judy. I kind of feel like maybe I am very slowly getting better. things are up and down. I think once the strange "moving" sensation goes away from me, I will be normal again and my mouth will go back to normal. Sometimes I can feel the skin lining of my lips growing back. Our mouth cells are always changing. I will be excited when I finally get back my layer of skin on my mouth that keeps me having to wear a mouth guard around my house! A doctor friend of mine told me 80 to 90% of the times, symptoms eventually go away. He was surprised by how long mine were lasting. But I have to be positive things will improve. I just feel bad for those who have even more serious issues like the breaking of jaw, teeth and bones. May God help us all.

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JenjiOz (# 2761) --

How long did it take for this sensation to go away? And how many injections had you had before you stopped with them? I had four injections and never went back for my fifth in October, so i am nearly 7 months clean. I think it all depends on how long we are on the prolia . They lie to us that it is out of our systems quickly. Maybe a person with only one injection with my symptoms will be rid of this strange phenomenon more quickly than someone like me, in whom it has built up over two years. The "moving sensation" did not hit me until after my 4th injection. perhaps it will take at least two years to go away. Along with that sensation, it affected my tongue first and and my lips. I think it's all related and am very curious to know if and when it might go away. Let me know if you also had mouth conditions with it! Also I never even had bone problems. I was on Prolia "for prevention of bone loss" only because I was on estrogen blockers. I am off estrogen blocker now, against my doctor's wishes and am eating VERY healthy and taking DIM and I Carbinole 3 for good estrogen benefits. these are things modern medicine does not support so I am having to seek council from those practicing alternative medicine. They all tell me "good" for going off Prolia. For those with real bone issues, I hope they can find guidance from alternative medicine.

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Andrea (# 2763) --

Andrea,
I am now convinced that even though prolia eventually leaves our system, the side effects we have because of being on it may have possibly stayed on in our system. The mouth problems I have are still with me even though I've been off prolia for more than 2 years.I had had 3 injections when I started having side effects that i noticed. They may not be as severe as they originally were but they are almost always present. I see the oral specialist again in a few weeks and maybe she"ll have a new "theory" on what exactly to fix it! At great expense I might add!

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JenjiOz (# 2761) --

Thank you for that information.... every little piece of knowledge helps.

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Re: Judy (# 2766)

wow, Judy, how sad. Have you tried things to cleanse your body? I take Essiac tea, dandelion tea, and activiated charcoal. I am always pursuing whatever things are out there! I am eating more than 7 servings of fruits and veggies (mainly veggies) a day. It's so ironic that I overcame breast cancer and radiation treatments, only to be put on something totally unneccesary in my life by the same doctor who was supposed to be "helping" me. On the up side, I feel my immune system is VERY strong. I work out, take all the supplements necessary for good bone health and to fight cancer. Except for prolia's effects, I feel like a Superwoman!! so I am feeling hopeful that all my hard work will pay off eventually. I have even lost 35 pounds since all this crap in my life started three years ago and I am loving having my figure trim again. Let's keep hoping for positive results!

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Re: Andrea (# 2768)

Wow Andrea,

You are quite a role model.

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Re: Andrea (# 2765)

I never had any major mouth issues, fortunately, perhaps just sensitivity to spices. Yours sound dreadful.
My issues were varied - every kind of skin problem, new allergies and immunological disorders, elevated iron levels, hair loss and much more. Probably the worst was massive lethargy for about a year. I had so many invéstigations for so many diseases! And there was the unsteadiness and loss of balance.
These have very gradually diminished in the 20 months since my second (and last) Prolia injection. My skin finally looks fairly normal and any itching is mostly bearable. I can usually wear ordinary clothes and jewelry without them leaving great welts or purple blotches on my skin.
I tried to drink lots of water, hoping to flush the poison from my cells. I have no idea if this made a difference.
My new doctor commented recently on how well I look, and I am about to take on some temporary work and feeling reasonably confident about it. After almost two years of feeling terrible most of the time it's a big change to my life, this feeling normal thing!

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JenjiOz (# 2769) --

It also took me 2 years after my last shot before I felt better. My various symptoms of fatigue, lethargy, weight gain, weakness, blurred vision were due to Prolia affecting my Thyroid . The joint issues are less acute also. What finally helped me was going Gluten free. Gluten is highly inflammatory, stopping it helped reduce the inflammation in my body.

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JenjiOz (# 2769) --

Jennifer,
Your post has suddenly brought back the early days of my reactions to prolia. I had forgotten about my reaction not only in my mouth but I had skin rashes and an incredible sensitivity to wool. That has now abated but the mouth issue lingers off and on. For so long I couldn’t wear wool sweaters which, living through Canadian winters, was a real hardship! Thank heavens I am back in wool and knitting up a storm. I visit my oral specialist and will certainly mention it to her as it’s still the skin in my mouth that is affected!

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Re: Sal (# 2771)

Sal, thanks for sharing that. I enjoyed hearing "a number" like two years. Two years can go pretty fast, even when we don't want it to! Interestingly, I talked to a lady at a health store and asked her if she knew when I could expect to get better. She said, "How long did it TAKE you to get to the position you are now in? .... Well, then, how long do you think it will take to get normal?" I realize the process will be slow. At the same time, I am anxious to be normal again, so I am doing many other things to cleanse my body. Have you tried any body cleansing or detox methods? I am curious to know if others out there have employed such methods. I am going to be trying something this year. If I am successful at seeing results happening, I will let everyone know because right now, we need to be seeking WAYS to help ourselves be less miserable, and get results faster!! thanks for giving me hope by what you said about feeling better.

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Re: JenjiOz (# 2770)

wow, two whole years to get better after only two injections. I am praying god, let it be only two years for me after FOUR injections. Can I ask you how soon it took you to feel your first symptoms?I took till after the second injection to notice something and it was so slight, I did not put it all together until after the fourth one! Congratulations on getting better. Your story shows us there is hope. .Yes, I have been told by my alternative doctor to drink lots and lots of water( hard for me to do), eat LOTS of fiber, and do things like epsom salt baths and stream rooms. Maybe this stuff has helped me a bit. I don't know. I hope to undertake a very strict body cleanse soon and will let people know if it has any dramatic results. (one doctor told me to do coffee enemas. That one I never tried. haha)

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Re: Sal (# 2769)

Thanks so much, Sal. The other day i got very angry as I felt Prolia swirling inside me. I shouted at it, "I'm going to GET YOU OUT. One way or the other, evil demon!" Maybe we have to visualize it like some people do when they visualize cancer as an enemy and focus on telling the body to FIGHT. We have to fight as best we can. It's so nice to find this place and hear the different stories. Not one person is affected exactly the same. I think with a combination of determination, positive attitude, and good health habits, we can somehow get it out of us. I feel so sorry for those who can't. My best to you, Sal.

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Re: Andrea (# 2775)

To han you, Andrea. My best wishes to you as you struggle to get better.
That is a good point, to visualize.
Be well.

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Wanted to know if anyone got an autoimmune disease from taking Prolia?

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Re: Andrea (# 2774)

I guest I am one of the lucky ones if you want to call it that. I had the severe reaction after my first injection. So I am in my 2 nd month post injection and every week some new adverse reaction surfaces. This week it is extreme back pain, leg and ankle pain and severe fatigue again. My asthma which was well controlled pre-Prolia is now causing me great grief. I get angry every day that I did not ask enough questions and trusted the specialist. Never again and if they thought I was a difficult patient before??. I thank everyone for sharing as it gives me a release also. For my stomach issues I started drinking Kefir and though awful tasting it actually helps.

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Re: Dawn (# 2778)

Dawn, I did not notice effects till after second injection but it was stuff not even related to the side effects they listed, so I did not put two and two together till my fourth. I sure wish I had realized what was going on before I did the fourth!! I think the fact you only did one is going to be to your benefit. Within a year, I bet you will be on the mend. I sure hope so; otherwise, I am doomed!! Good luck. I am sure you are going to get better . We all need to have faith.

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Re: JenjiOz (# 2770)

"Massive lethargy" is a good descriptive term. I essentially lost a year of my life to that lethargy. "Tired all the time" didn't quite explain the sensation that absolutely wilted my energy... I felt like a totally lazy person... doc thought I was depressed.. I was not depressed- just drained. After a year of no Prolia I am starting to bounce back little by little.

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