Prolia Scleroderma

Pcanbo Says:

Hi, has anyone had the prolia shot and have an auto immune disease? I have scleroderma and bones of a 101 year old woman, I am 57 years old. My Doctor wants me to take these shots for the osteo. I am scared to take it because I already have some of these symptoms with my scleroderma, but they are manageable if I am careful and take care of myself. This medication seems like it will kill me. My doctor keeps telling me it's safe..I don't want to take prolia but don't know what else to use in its place, or live my life as is and risk not taking it. I'm tired of taking this for that ailment but now you have this illness so now have to treat that and it goes on an on. Any feedback appreciated. Thank you for sharing your stories.

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Kathy Says:

DO NOT TAKE PROLIA. I had my first prolia injection on 08/03/15. I had hurt my knee and had my first injection of Prolia about 2 weeks later. Within a couple weeks I had severe hip, groin, back and neck pain. I have had MRI's on my lower back and hips. I have had several xrays to see if there was anything broken or cracked. I have had pain shots in my groin and hips to try and control the pain. My jaw hurts so bad that I thought I had a tooth problem. After going to the dentist, he couldn't find anything wrong. Went to aftercare because I thought then that I had an ear infection or sinus infection. My jaw was swollen but they found nothing else. I have spent 4 days a week in Dr offices trying to find out what is wrong with me. Blood work shows no bone disease. My Dr put me on steroids to control the pain and they help but if you read online it's a drug you should not be taking when on Prolia. I am at my wits end and in constant pain. My jaw, hips and groin hurt so bad that all you can do is sit and cry. Do a LOT of reading online before you take this! There is NOTHING to counteract this drug and you cannot quit taking it-it's in your system. This drug should never have been approved by the FDA as it was not thoroughly evaluated. I repeat - DO NOT TAKE PROLIA.

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Anne Says:

Do Not - I repeat - DO NOT take the prolia injection. I had one 11 Aug. 15 & have been in total misery with pain in thighs, hips, & groins each day of my life. Not to mention the next morning I woke up with a mouth full of ulcers on my tongue, gums, & roof of my mouth. I immediately went to an oral surgeon & few days later he took a biopsy which came back with a bacterial infection. Duh - the immune system being attacked was likely caused by the prolia, so the Dr. stated. I have had horrible muscle spasms & muscle pains as well. I went back to my primary Dr. & he gave me something for pain. (ha) I also contacted the maker of prolia & was told there was no antidote & I'd just have to live with it for the duration of the 6 months. I am advising everyone not to take prolia!!!!!!

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David Says:

Usually when I see posts telling others not to take something, I think to myself that "everyone is affected differently, so one persons's outcome doesn't necessarily mean the same problems will exist for other patients." - And true as that may be, based on my research and seeing all the related discussions here involving the seriously debilitating side effects of this drug, I'm beginning to feel like Prolia may defy this logic... because I can't recall ever coming across a positive review on it. I seriously question the toxicity of this drug to the human body and our immune system, whereas the odds of a positive outcome seem slim from my perspective. One analogy I've heard is that taking Prolia is like using poison to treat a wound. That could very well be the case for all I know. And while I don't intend to discourage anyone from seeking whatever treatment their doctor recommends, patients should probably do extensive research and weigh out the benefits vs risks of Prolia before taking the next step.

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Debbie Says:

Re: Anne (# 2) Expand Referenced Message

Hi Anne. I took prolia and am still dealing with the side effects. I took it in 2016. I have an auto immune disease now but the doctor doesn’t know how or what it is yet. I wish you and everyone who took prolia could get together and create a class action suit against Amgen. Try to shut down Amgen for good! Also sue the FDA for allowing this poison on the market in the first place. All the people who took prolia are like Guinea pigs and the doctors prescribing this poison most likely get a kick back from it. I was two months from being 43 years old when I took it. My daughter was less than two years old at the time. I took it in June 2016! I hope you feel better soon. God bless you!

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Suze Says:

I am so sorry to hear about your condition and I do hope and pray for healing for your condition. I had my first shot in oct 19 at 53 for osteoporosis and 5 spinal fractures- not being on any other medication I was in a neutral position to understand my own body. Up until taking this I was up to the stage of practicing yoga and meditation every day, by february I could do almost nothing, feeling like I had the flu in my bones. My legs were so heavy and painful I could hardly walk for weeks, immune system weakened, having a history of low white t cells I was concerned. Headaches, toothache, chapped lips constantly, dry skin, no jaw ache but pain behind the eyes. Anywhere that you have had a previous root canal or operation will come up more from my experience. I informed the hospital when I was at my worst, took them a month to phone me. My symptoms started around end 2019, took about 2 months to set in and gradually got worse by march I had made the decision never to have this again - I have a book called the bone building solution - micronutrients etc - get the most updated version. Sam graci, I do worry for others and especially for those with immunity problems because I know how dreadful I felt and the mental strain, thinking that this will be permanent is the worst or that you may have devoloped something like fibromyalgia which is what I thought I must have had at one point. Thankfully I am now feeling a little improved. I was due for second shot last week, not in my lifetime. The side effects far outweigh the benefits in my opinion. I expect there is a risk of rebound fractures, but now that I have discovered that I can take osteocare calcium with magnesium and lots of sunflower seeds and parsley for potassium I am going to keep on the nutrition route. I could not do any weight bearing excercise whilst on prolia as my muscles just would not operate. Now I am gradually coming back to a little a day. I wish you well with whatever decision you come to.

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