Prolia Side Effects Ongoing (Page 8) (Top voted first)

I had my infusion Mar 4 2015. I have experienced severe stomach pains, leg pains that wake me up at night, a horrible dry cough, near migraine type headaches, very severe weakness, trouble walking, constipation, had to have dental work that I usually have great teeth, some trouble sleeping. My rheumatologist did nothing to try to help me with the symptoms but my primary doctor gave me medication that help with the stomach pains, take Excedrin for Migraines and enteric aspirin for back and body, and other meds to try and find some comfort. I'm somewhat better than the few weeks after the infusion but still have a lot of problems. Hopefully this doesn't last for 6 months.

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I took Forteo for 22 months and while it did improve my bone mass a little bit; I would not go through that again. They don't tell you that the benefit from it starts going away the minute you stop. Now 4 years later and another bone density test I'm in terrible condition and they're wanting me to take Prolia now. The biophosphates caused me a lot of heartburn and reflux. After reading your post and many others I'm not going to succumb to their pressure on this. I'm 63 and yes, I would like to get into my 80's without breaking my hips, back(I've fractured 2 vertebrae), or wrists. But I'm already on a lot of pain medication and finally sleep well. I don't want to lose that and I'm so tired of drenching hot spells and IBS I sure don't want to add more problems.

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Mari: The report you sent to National Inst. of Health, what address did you send the report? Do they have an online form? Did you report to the Food and Drug Admin also.? All I can do is encourage everyone to keep reporting.

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My mistake, I sent it to the FDA, not NIH. Everyone should report it. I can't find a legal case, so if anyone can give me specific info I'd appreciate it.

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Daisy~that bone overgrowth around the eyes is Sjorgens(sp?) People here have usually gone to Mayo for it. If you have a super eye surgeon where you live, let him at it. It can put too much pressure on your eyes and your retinas will fall leaving you blind if you don't get them stitched back up. It's a very, very small time frame one has when this happens. The surgery has to be the same day. Praying for your best~Pood

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Thank you..I believe it would be a "nightmare" for me and I appreciate you all writing about your experiences. Doctors never want you to read and be educated on the medications they give you!

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Poodle, I have been to Mayo Clinic with no answer. (Sept 2015) They were stumped and could only think it was the Prolia. The eye is not involved and so eye surgeons who have examined it say it is not in their practice. I have seen a surgeon who is an expert on bone tumors of the eye socket. Since it does not press on any part of the eye and does not appear to him to be malignant, it is best left alone. (Jan. 2016) There are many nerves and blood vessels located where this tumor is and he felt it would be more harmful to try to biopsy it. To remove it would mean to cut into my actual skull as this growth is an extension of the bone of the skull and not a separate growth. The consensus of all the specialists is that it is most likely the result of the Prolia depositing bone where it jolly-well felt like putting it. :( So I continue to monitor it. It seems to have stopped growing (I hope) and that may be because I had two injections of Prolia. One in July 2014 and one in Jan. 2015. Perhaps the Prolia is running out of steam.

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There were two -- one was named Lamb and I think from the state of NC. There was another too but he seems to have disappeared. They were looking for people that had large hospital bills from Prolia like Canadian with a broken femur. The others that wrote had actual bone build up that had to be removed as it was squeezing their eyes. I had no idea yours was a tumor. Keep us informed on how it stays -- if it turns to bone or remains a tumor. Since their's was bone, they were calling it Prolia gone wild. Be well~Pood

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Well, if this isn't a coincidence. I had backed off some from my magnesium and had been drinking smoothies with spinach in Pom-Blueberry Juice. Last night was my first huge Charley Horse cramp since I started on my supplements. Thank you for your post. I'm eating less spinach and taking more magnesium. I wanted spinach/kale for my eyes which have a sometime maybe potential problem but if it hits, I have to have surgery immediately. Was hoping the 'greens' would keep it at bay. Just because Prolia is gone, does not mean in the least that it's side effects are gone. Thank you Ms. Canadian of reminding me of my own medical advice. Pood

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Forteo had its own problems and as I seem to recall the manufacturer was involved in numerous legal cases. Prolia is chemotherapy, pure and simple. If you don't have cancer, stay far, far, far away from it. That's a little fact they love to keep hidden from us. Do you want to go thru chemo for your bones? You will have to take it for 10 years straight with no holidays. Prolia got past the FDA by lies and now the lies are coming to light as the FDA is constantly updating their info on Prolia. If we keep enough pressure on them, they may take it off the market. Be well~

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POD: Check FDA web site. New revision to Prolia Labeling. Keep writing letters!

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For me, I have had the worst itching of all time. Started about 2 days after the shot and it has been 6 weeks now with no let up. My skin has broken down from scalp to toes with lesions. I will never get this again.

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Marti~Please read my post number 87. I'm sure you can figure it out. Be well~Pood

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Shirl, sorry to hear you feel so sick. If its any comfort, my side effects started two weeks after the injection. To the point I couldn't walk - it was a long long road out and walking again, now without a cane most of the time, graduated from a walker. So many side effects and no doctor will believe me. My copays alone last year were over 12,000 dollars . . . that's how much medical help I needed to get back on feet and pain manageable. Whatever happened to my neck has been calmed to bearable with a radiofrequency ablation and after about 7-8 months feeling fairly normal except some of my blood tests which previously were always pretty good, except I fight anemia, are irrigular, things I never had previously in my life. So hang in there, try to deal with the symptoms. I will say accupuncture helped me immensely - that's when I got out of walker to cane, then cane to sometimes not cane. And doctors still deny. Will be thinking of you in your battle to be well again.

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It's been a year. I'm still experiencing some but slowly very slowly improving. Did not get seconditions injection

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Just reading this Poodle and I'm furious. While two docs looked me in the eyes and told me that's impossible I was having so many symptoms as when Chrons was so bad and chronic bronchitis and joints etc. Because Prolia bypasses the immune system. I told them bull whacky. No more Prolia and I'm not taking their next drug of choice which is Reclast. This DOES attack the immune system in some I f us.

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For what it's worth, the tumor made of bone that began growing over my eye socket after the first of 2 Prolia injections (I was to the Mayo Clinic, specialists etc) and the consensus is that it was probably due to Prolia but no dr would sign off on it... anyway the Prolia increased my bone density in some places as much as 24% !!! in less than one year - after 2 injections / 6 months apart. I stopped taking it in Jan. 2015. The tumor remains and can't be removed. It is the size of a lima bean and is a part of the eye socket bone... where I am going with this is... I have been on no boned density meds since Jan 2015. I will have a dexa scan and results within 10 days. I will let you know if my bones dropped in density once off that poison or kept up. I have done nothing special except taking oral calcium and Vit D3. Let's see what happens.

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How to contact Amgen -- go to Google or whatever you use and put in Amgen Corporation. It will take you directly to their website and all their meds are listed so go thru meds and find Prolia and click on it and all about should open up for you. On their website they should have a 1-800 number so you can call them. Please don't forget the FDA too. The only thing Amgen has to do is report what was reported to them to the FDA if you are in the USA. They used to have phone numbers for every country in the world where Prolia is in use and I'd say it's about 98% of them. Sad but true. Pood

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Happy News for me today. I got my Calcitonin. The Dr. looked and read all about side effects, etc. and said I see no reason why you should not have it. Now I know my bones will get better slowly and I won't get sick. I'm a happy camper!
Pood

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I'm 5 months post Prolia and just in the last few weeks have begun to feel just a little bit better. My story reads symptom wise very much like Siri- add weak muscles including hand strength, bladder, eyes (crossing) and bowels. Also add muscle/bone pain in my rib cage, increased dry mouth and eyes, chronic fatigue and migrating itching. I went to mayo clinic this week to address my symptoms and to get a new plan for osteo treatment t as I won't be revisiting Prolia or bio phosphates again. I saw a rheumatologist, endocrinologist and a pumoligist. Have a new treatment plan for osteo, got a new diagnosis of Sjogrens Syndrome and cough not copd... Going there was well worth the expense- not a vacation but coming home with a new outlook!

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I am happy you got to see a rheumy at Mayo. When I went for my osteo and Sjogrens, they would not let me see an appropriate dr as "their Medicare quota was filled for the next two years." As I had a bone tumor growing from my eyebrow due to Prolia, the only dr. at Mayo that had not filled their Medicare quota was an ophthalmologist. That got me nowhere. I finally found an eye socket specialist in Palm Beach area who agreed... the only thing that could be causing it was the two injections of Prolia that I received in one year. BTW: Bone density increased by 24% in one year. How is THAT possible. I have been off of Prolia for 15 months. Just had a dexa scan and my bone density dropped back to pre-Prolia osteo. That drug is evil. I now have a tumor made of bone over my eye. It ceased growing about one year after the second shot.

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