Prolia Side Effects (Page 112)

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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Re: Betsey B (# 2219)
You did not state the location previously on your clavicles. Could just have well been on top.
Pood

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Re: Poodle (# 2221)

as a medical professional you do at times say things that are not true or medically sound.

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Re: Poodle (# 2221)

Nor did I need to! Put a collar and a leash on your yourself.. oh btw the clavicle is the collar bone!.. this is a forum.. people tell about their experience with interaction with drug etc.. not diagnoses..

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Re: Barbara (# 2220)

I’m with you on the natural and herbal.. let me know what you get that works.. I have been taking high potency soft caciim, ultra bone up,D3 in mega doses. Hair loss is still frightening but not as severe. Epsom salt baths and coconut water. Rice water is a great hair strengthening rinse too . Simple to make .

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Re: Barbara (# 2220)

I too have gone natural. It is too soon to see results, but at least I feel better. My next blood work and and DEXA is due next month.

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Re: Sal (# 2216)

Thank you for acknowledging me and my posts... it is comforting to hears others are cycling... I say cycles to my different specialists and I often see an eyebrow raise or a corner of a lip curl up to a disbelieving smile.. it is so discouraging even though I know it to be my truth. The fact that we share our story and pain and journey through this is what keeps us going and keeps hope in our sights... my comment is often that cycling of symptoms is reassuring to me at this point as it means they are not permanent! Hugs and hope to everyone...

I would also like to suggest that we ignore anyone posting rudely on this forum. We all need support and virtual hugs... there is no energy for negativity... we know who is helpfik and who is not... helpful and hopeful is what this forum
Is about....
big hugs to all of us...

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I had my first and only Prolia injection on the 30th of March, 2017. Four days later I was at the Emergency Dept. of a local hospital here (Im in Canada). I had an autoimmune response that included severe erythema lesions on my legs, my feet and my elbows. The pain was unbearable and I could not walk. My husband had to take me to the hospital in a wheelchair. Nobody at the hospital (and I saw three different MD´s) wanted to write the word "Prolia" in my file. The three of them told me that it could have been "anything"... I asked them to write it at least as a hypothesis... When about a month later I requested a copy of my file, the reference to this poison was nowhere written. Three weeks after the injection, I had lost 20 pounds and was loosing my hair, my heart was racing all day and was suffering from extreme fatigue. At that point I went to see my GP who had prescribed this poison and told him what I thought. He told me he had “many, many patients on Prolia and nobody had had any side effects”. What I found quite curious is that the Dr. had kept a list with the names of all the patients he had prescribed Prolia to. He showed me the list emphasizing that I was the only one who had had these reactions. I told him that I thought I was “lucky enough” to have had these reactions immediately after the first shot. I realize many have had several injections before they have a severe reaction. I bet there are many out there who have had reactions they do not associate to this poison because these reactions did not happen immediately after the first shot. I had cancer five years ago and I realize that my Dr. should have never given me Prolia (now that I understand how these monoclonal antibodies type of drugs work with regards to your immune system). When I had cancer in 2010, I did not want to have chemo. I chose to do immunotherapy. The goal was to increase my T-killer cell count and strengthen my immune system. I won that battle and after my 5th year post-cancer, I was not only cancer free but healthier than ever. My skin, my hair,, my mood, and my whole health was never better. I went back to my gym 5 days a week, had a perfect weight and when I turned 60 early this year, nobody could believe my age. I had then the bad idea of listening to my GP when he suggested that I underwent a densitometry and later insisted I should use Prolia. I must have been in my 10 most stupid minutes when I accepted this poison without having done my own research, as I did when I was diagnosed with cancer. When I understood how Prolia works, I cried for days, realizing that I had been given a drug that is used as chemotherapy and that also causes your T-cell count to go down and go totally crazy. In addition, In order to get rid of the erythema on my body, I had to be treated with Prednisone, a corticosteroid that leaves you immune-depressed… I was living a total nightmare. Despite the nightmare, in the middle of July I was feeling slightly better and had partially recovered my weight. I travelled to South America and shortly before my trip I felt that the whole cycle was beginning again. But I had my ticket and still felt well enough to travel. Shortly after my arrival, I was having palpitations, was feeling extremely tired and my hands were shaky… I had to urgently see a Dr. who immediately diagnosed me with hyperthyroidism. I was put on two medications and only started to feel better and regain my weight about two weeks later. In the month of September, when I the thyroid medication had already been reduced and I was feeling quite well again, we were celebrating my daughter`s B-day when everyone noticed my eyes were swollen. I have seen at least three Ophthalmologists since. Non of them seemed to care about my story. I have been told that having swollen eyelids happens with age (LOL), that I need artificial tear drops because my eyes are too dry, etc….
Fortunately I have been in touch with the Endocrinologist I saw in South America. He believes that I have Graves Ophtalmopathy, probably as part of the whole autoimmune response to Prolia and that unfortunately this tends to run parallel to the thyroid disorder. In other words, it may not automatically correct itself even if the thyroid is well controlled. He believes it is imperative that I am treated with Corticosteroids to prevent the eyes from popping out … which has not yet happened as only my eye lids are now severely swollen but the eye globes seem to still be contained... I`m desperately trying to find a reasonable Dr. who would put me on Prednisone or another immune-suppressor, as I realize I have no other option. It is not only a horrible condition aesthetically speaking, but is also causing vision problems as I have diplopia and photophobia….

Please, I need to know if anyone in this group has had the ophthalmic problem associated with the thyroiditis following the use of Prolia. Also, could you please share the name of the medication that has been given to you for this and the actual amount?

October 30th was the 6th month anniversary since my life was transformed by this horrible “medication”. I look like 10 years older than 6 months ago. My beautiful hair is falling, as I have only seen in cancer patients who are undergoing chemo.

I agree fully with those of you who have said this drug works in cycles…. That is what I have experienced. I currently am again experiencing fatigue, insomnia, and strange ‘migratory’ pain in the bones, even though I had a couple of pretty good months between July and September.

Lately, my spine makes strange noises when I move and I have the feeling that I`m extremely fragile. My nails, which had become very nice and strong in the first few months after Prolia, have again become extremely fragile and brittle. My skin goes through periods of being nice and soft and days or weeks of being rough, ugly and dry.

I never thought 2017 would be so horrible for me because of this drug. I retired from my permanent job two years ago and was beginning a new and very successful cycle as a self-employed professional. I have hardly been able to work since March. I feel we have been used for a clinical trial without our consent. If you look at AMGEN website, you will see that the list of negative side effects for this drug is continuously being updated…. Isn’t that a proof that they had not fully researched what they had put in the market? I hope we are at least compensated for the objective losses that we have incurred because of this killer drug.

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Re: Maritere (# 2227)

I am so very sorry that this has happened to you. This company has a great deal of power and influence. My relatives in Europe tell me that this drug is commonly used there.

Anyway, I have found relief in an anti inflammatory diet. The plan I have used is from a book called INFLAMMATION NATION by Chilton. About 6 weeks ago I switched to this plan and have begun to feel better, after a very long cycle. I have developed enough strength to do light exercise again (chair exercises, chair yoga), a walking indoors from a DVD, etc. I have lost 6 of the 17 pounds I gained, my rashes and intense itching are gone also. I too had begun to show my age, and now people can't believe that I am on the verge (tomorrow) of 70. I am thinking positively that my good health will continue.
Be well.

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Re: Maritere (# 2227)

I'm so sorry to hear of your experience with Prolia. I, too, am Canadian, and can relate to your frustration. The doctor who prescribed the Prolia for me also, when I told her my many reactions, said that she'd never had a patient develop side effects.( I might add that she's a gynocoligist ....not a bone specialist) As my side effects didn't really manifest themselves until shortly after the 3rd injection, it took a friend of mine to suggest it might be the Prolia! I think as Canadians we sometimes are too polite and don't want to make waves! Not me, I called Amgen, spoke to one of the drug specialists who also said he'd heard of no others with complaints! I sent a report to Canada Health in Ottawa and got a phone call asking me for a list of all my side effects. As for your eyes, I never associated a problem I have had after I had laser treatment for glaucoma . The day after I developed severe stabbing pain in my eye. So bad that the only relief was to keep it covered so I couldn't blink. After seeing several ophthalmologists I ended up at Sunnybrook Hospital in Toronto where I was diagnosed with severe dry eye syndrome and was prescribed Restasis. Very expensive and I do get stinging in the eye but it eventually helped. Whether this will help your situation, I don't know. As my immune system was compromised as was yours and others using Prolia, I lost a front tooth, developed muscle and bone pain to the point that I developed a rotator cuff tear for which I'm receiving cortizone injections and physio on a weekly basis!$$$

Then there are mouth sores......I could go on .i have had a couple of doctors and an oral surgeon agree that it was Prolia that probably is the culprit. I find that reading the side effects that others are experiencing most helpful because it validates what I am dealing with and also, at times, helps me realize that some things I hadn't attributed to Prolia, in fact, are because of this awful drug. It's been a little over a year since my last injection and the cycles are slowly dissipating. I wear a flipper for my missing front tooth and hopefully will be getting an implant soon! You appear to be a very pro- active person who is advocating for your health and I hope that sooner rather than later you'll be back to your former self. I'm very dissapointed in the medical field for not showing more compassion and understanding of their patients complaints. It seem that many of them are on the side of big pharma!!

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Re: Judy (# 2229)

Regarding Restasis, that drug can lower the immune system. When I took it, I had a chronic oral thrush. In addition, I had severe headaches with stabbing pain in my eyes. Additionally, the new drug, Xxidra also caused me acute headaches and stabbing pain in my eyes, but not the oral thrush. Currently, I take autologous eye drops. My blood is drawn, spinner down to the serum, then the serum is added to Refresh eye drops. In addition to no side effects, a 3 month supply costs less than Restasis or Xiidra! In The U.S., our drug prices are insane. For Restasis, I paid $ 500.00 for 3 months, slightly less for Xiidra; autologous drops are $150.00!

Regarding your shoulder, my physiatrist, Dr. Loren Cushman has written books and I think is on YouTube demonstrating Yoga Poses for Rotator Cuff tear (he repaired his own that way); also yoga for Osteoporosis.

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Re: Judy (# 2229)

Thank you Judy. Being part of this group, experiencing similar symptoms and sharing our experiences has been extremely helpful. Living this hell in isolation would have been ten times worse. Hoping for a full and prompt recovery for you and all in this group, I wish you a very happy Holidays.

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Re: Sal (# 2228)

Thank you Sal for sharing about your special anti-inflammatory regime. I am going to follow your advice. Take care. Happy Holidays and hope 2018 brings us all HEALTH, the one thing we take for granted for too long sometimes... All the best to you.

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Re: Maritere (# 2227)

This is what I found.... it was first introduced in Europe. And there’s more. Lots more!

Centerforhealthjournalism.org/2015/03/21/prolia-another-wonder-drug-wasnt

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Re: Maritere (# 2231)

Thank you, Maritere for your kind messages.
I finally feel like I have reclaimed my life,
just in time for my 70th birthday !

I too, appreciate this message board. To be validated when no one else believed me, has been a lifeline.

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Re: Maritere (# 2227)

I would like to ask you if these monoclonal drugs ever leave your body. I asked Amgen and could not get a definitive answer. I thought you might know .
Thanks you. Barbara

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Re: Maritere (# 2227)

Maritere, it suddenly dawned on me after reading that you had experienced erythema nodes on your legs that I, too, was diagnosed quite a few years ago with erythema nodosum . I had very sore lumps all over my legs along with sore joints. The reason I'm telling you this is that at the time they said it is quite often the result of a reaction to a drug so it's seems more than a coincidence that you should develop this after taking Prolia. Just a thought but it sure debunks what your doctors told you.
Wishing you improved health and a happy holiday and hopefully 2018 will be a better year for you! J.

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Barbara (# 2221) --

I was given this drug in May 2016. I have had all kinds of problems. I now have a fracture of the sacrum. My family doctor said usually the only way to have this kind of fracture is in a car wreck or something of this nature. I am 76 years old and never had a broken bone before. It also is causing me problems with the ligaments in my hand and feet .

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I just got my 4th shot of Prolia. This time my blood pressure shot up. I had gone to my primary doctor the day after my Prolia shot for a routine appointment and my blood pressure was 172/80. I have always had good pressure. My chest feels a little tight and my heart is beating harder. I called my Rheumatologist and was told it could be a reaction. If it gets worse go to the ER. Give it a few days on monitoring. I am scared and nervous. I don't want to get worse or go to the ER. Christmas is a few days away. Of course I still have more things to do. Has anyone had this problem with Prolia and blood pressure rising?

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Does anyone know how long Prolia stays in the body?
Is there any kind of Doctor that can help get it out of your system? I appreciate any kind of information about this.

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Poodle (# 2219) --

I talked with a supervisor at the FDA and this gentlemen told me that we have to start letting our congressmen and women our concerns. He told me that they have a big pull in getting a drug off the market. SO please pass this on and flood our government with letters and phone calls.

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Would like to know if anyone had side effects from Prolia but they went away - and how long did it take for that to happ...

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I had my infusion Mar 4 2015. I have experienced severe stomach pains, leg pains that wake me up at night, a horrible dr...

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I developed a red burning itchy lumpy rash after one injection of Prolia. Mainly on face neck chest arms scalp. Anyone e...

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I'm a 59 year old female, diagnosed with Behcet's Disease and I use Prednisone for treatment for my weekly flare...

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I am 60 yrs old and suffer from osteoarthritis, osteoporosis, and myofascial pain syndrome. After discussing with my end...

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I am 81 and had my first Prolia Shot May 7, 2015 and after three weeks I have developed a red rash looking sight UNDER t...

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Aprox 2 weeks after the prolia injection I started to experience nausea and weight loss. Also, loss of appetite and a ke...

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I am not going to have my next shot of Prolia due 11 June. I have already had two injections and lately have suffered ho...

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I am a 57 year old female who has -2.5 bone density scores on hips and -3.4 in the spine. I used Forteo for 2 years, but...

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What does the pharmaceutical people of Prolia advised regarding its side effects? ## Hello, Lala! How are you? They do w...

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