Prolia Side Effects (Page 97)

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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Sal~question for you. Is the pain in your jaw coming up through your neck. Feel really well on the side that has the extreme discomfort and find out if it is indeed coming to your mouth from your neck. Second question~where were you injected with this new biologic poison? I may have the answer for you but I need more info.
Pood

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Diana~has your email recently changed. I just sent you one and it came back as undeliverable. ML Pood

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The pain starts under my jaw, spreads to the jawbone and onto and behind my ear. I can barely open my mouth. Thing is, I have a long history of Fibro and Myofascial Pain Syndrome caused by a leg length difference. I had limb lengthening surgery,and it changed my life. After the Prolia, every pain ( and this is after being pain free ( came back with a vengeance. It follows a pattern, starting with my jaw, then head, then neck, then shoulders, then top of thighs. The pattern is something new since Prolia. Now my teeth are starting to hurt, and I have leg cramps. I am concerned about another episode of Hypocalcemia, and Hyperparathyroidism. Today I had lab work done.

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Sal~did you happen to get your injection of Prolia on the side where the pain is radiating? Mine did and I thought I was getting ONJ so I went to my dentist and he saw nothing wrong but touched on a muscle maybe in the back side of the jaw and I about flew out of the chair. The only thing I know of that will give you relief from that is dry needling from a Physical Therapist. I hate to tell you this but it lasts about 2 years after the injection. Finally, now I can rub on that area on my neck and it does not hurt. For muscle spasms and cramping I highly recommend Magnesium. There is a problem in our bodies that we are unable to store calcium so Prolia attacks muscles looking for some. It's not there but Prolia continues to search for it. The Magnesium should be a brand you can tolerate and you need 500mg every night for about 3 years. If you are worrying about your previous surgery going bad on you, you can take some envelopes that have bubblewrap in them and put pieces of those in the heel of your shoe that you may be losing some height in. You have to change it every few days as our weight crushes the bubbles. You will have to be closely monitored when your Prolia is up because quitting Prolia can and does cause vertebrae in our spines to break. I sincerely hope the above gives you some relief now and in the future. Be well~Pood

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Janet~I just posted the name of a firm in NY or NJ that is doing class action on osteocronisis of the jaw. I filled out their on-line form and am currently waiting to hear from them. You obviously have some so you should be included in their suit. Pood

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The thyroid gland in part produces T-cells that seek out and destroy invaders in our body. That is only one function of one part of it. May I suggest that you put in "what is the purpose of our thyroid gland" in your browser and you will see all of it.

Be well~Pood

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I am not sure, but may have received the sho on the same side, the right side. It makes sense because that is the way the nurse faces. Two years??. I was getting a life. This cycle of pain was never anything I experienced during all the years I suffered ; this is why I blame the Prolia. Thanks for your concern.

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Maritere~re: Thyroid. I posted it today. Be well~Pood

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Poodle, when you mention muscle pain, I'm beginning to wonder if the problems I've been experiencing in my upper back are the result of prolia( besides teeth, sores in mouth, ecxema etc) . It started on my left side with very sore muscles in the shoulder blade area( my injection was also on that side) and eventually spread up to my left shoulder then to the right shoulder. After an ultrasound it showed that I have bursitis in the left shoulder and a rotator cuff tear in the right. I am even having trouble typing this. I have seen a shoulder specialist who now wants an MRI done which in Canada means waiting 31/2 months to get it done in the hospital. These problems are not listed, to my knowledge, in the side effects however they do mention joint and muscle pain which I suppose come under that category. I've tried the magnesium but it gave me terrible diarrhea . What I would like to know is if any others have been experiencing these same symptoms. Of course the doctor who prescribed this poison says none of my symptoms are caused by Prolia!!! I now have to decide what to do for my bones as my T- score is - 2.8 .
I haven't got the luxury of even contemplating taking legal action as I'm in Canada and know of no one else who has had any side effects.

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Hi Judy, I am in Canada too... In Quebec Prolia was recently approved under the RAMQ (Medicare program), which means a lot of women are being prescribed this poison.... I feel the social obligation of sharing my experience with everyone I think may eventually be prescribed this horrible “med” .... Where in Canada are you? When I showed up at my Dr.’s office two weeks after being injected with Prolia, weighting 15 pounds less and looking half dead, with anemia, palpitations and a completely crazy thyroid gland, he said it was something else, not related to Prolia....Next, he added that he had never seen anything like this with this great med and he went out of the exam. room to get me the lists of hundreds of patients of his that use this med.... The very reason that these people (including me, I suppose) are in a special list, made me very uneasy... Do we need to be reported somewhere as “high risk”? Is that why we are in these special lists? ... We are not part of a clinical trial...are we? All this to say that I am in Canada and if any action is taken I am here. I also want to add for everyone interested, that it has been nearly one and a half months since I received this injection and I feel as if I had aged 10 years. I am still on Prednisone, at the reduced dosage of 7.5 mg (began with 20 mg around Easter)... I no longer have erythema on my legs and arms and I have gained 4 pounds, albeit with great difficulty.... Still cannot find the strength to go back to the gym... (I was in top shape for my age of 60, doing 3 spinning classes a week, yoga twice and 2 or 3 toning classes) but have slowly began to do some stretches and abdominals.... I have decided to follow a strict bone-strengthening diet; cannot wait to finish this prednisone thing... I am immuno-suppressed with this medication as you know.... which means I have to be very careful as to where I go... and keep away from those who have colds and flus... I had breast cancer 6 years ago and chose to do immunotherapy instead of chemo and had proudly won the battle....You can probably imagine how awful I feel now that after all the work I did, Prolia caused me to be as immunosuppressed as if I was on chemo....when all I need is to maintain a good level of T-Killer cells in my immune system (as should every person who had cancer)....and yet... Prolia actually limits the production of T cells..... Well..... I didn’t think I had to take a full Biochemistry class in order to know if I could trust my Dr..... That was my mistake. Not realizing that most MD’s (excuse me, the exceptions please), know very little about Pharmacology and about Nutrition. These are the two fields we are dealing with in order to keep ourselves healthy. I wish you all, luck with getting rid of this biological (!!!) poison from your bodies and to get back your health. Please exercise. This is the only panacea together with proper nutrition (and the good habits of not smoking nor drinking alcohol, sleeping well and trying to avoid the unnecessary stresses of life). I also apologize to the poor female Chinese hamsters whose ovaries produced this horrible medication that I, IGNORANTLY, accepted to have injected in my body. The way in which Prolia works in our bodies, particularly our immune systems, is so complex that I just hope we will be able to get rid of it all one day.... In the end, I am just thankful to God that this reaction happened after the first injection.... At least, I can stop early enough... before the withdrawal impact causes spontaneous femoral fractures (!!!!!) and other things.... I hope.... All the best to you all!

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Meritere, so happy to hear from a Canadian! You are so right about doctors not knowing about pharmaceuticals or nutrition. I have a niece in Montreal who is the only doctor I know who knows anything about nutrition and is not in bed with big pharma either. My doctor also blamed my symptoms on the stress I was under since my husband had a stroke. It was my pharmacist who set the record straight on that! I live in the Toronto area. I have just returned from physio due to upper back problems. My symptoms escalated after my 3rd injection in July, 2016 and are still ongoing. Needless to say, I stopped taking them. I am a very young 75 who was very active, fit and full of energy. Now I can barely drag myself around. I still hope that the Prolia will eventually leave me alone and I can have my life back. I am down to 99 lbs as the sores in my mouth make eating difficult. Not that I've lost a lot of weight as I was never heavy. I am also seeing a specialist in oral medicine who so far has not been able to diagnose exactly what the sores in my mouth are so she can treat them. We've tried anti virals but I reacted badly to them and had to stop. At least she has told me that she has seen other cases of oral side effects from Prolia. I, too, lived in Quebec as a child in a town on the west shore of Montreal, Baie d' Urfe. Due to my shoulder problems I am even finding that typing this is becoming quite painful. Did you contact Amgen regarding your side effects? If not I would suggest you do. I did and reported my own problems. They told they'd had no other calls regarding side effects! I guess that most who do have them aren't aware that there is a number to call. 1-877-776-1002 in Canada. I even reported it to Canada Vigilance Program - Adverse reaction online which is part of health Canada. They also have a phone line 1-866-234-2345. I think if more info gets out to those considering Prolia, the better! I have even contacted a CTV health reporter but never heard back. I know that none of this will make our problems will go away but maybe it will help some others to stay away from this terrible drug!

Bye for now,
Judy

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Your post was very impressive and well worded. I feel very much the same way- and here in the US we are experiencing the same. No doctor had seen such a prolia response until mine... very frustrating. Then I watch the new prolia commercial on tv selling this bad drug to more people. Thank you for posting.

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Judy~different types of magnesium are fine while others cause diarrhea. Mine is: Vegetarian Magnesium Oxide, 500mg. I went with it because it contains no gluten. It's also preservative free. I don't know if you can get it in Canada because it is manufactured in Florida in the US. I would hope you can find something very similar in Canada. Ever so happy my Prolia journey is over. Be well~Pood

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Pood, so glad to hear you are past the worst! I think I am getting, there - have an autoimmune flareup - but I think that's my own fault, I got kind of crazy eating biscuits, but will get that out of system. They are checking me out for Celiac Disease. I hope its only gluten sensitivity. Still have a bit of neck problems. But can handle that. My dental work has progressed to the point I can afford. BUT - - have a good sized gastro problem, and in finding an answer for that and anemia, I've made a huge discovery, that makes me feel sick just knowing it. Google McKesson Pharmaceuticals. My hematologist scheduled me for an iron infusion, and >>>>> hit the fan. The Center's "management team" decided I didn't need it. But they told me the insurance refused to pay. I found out that was a lie. So I went back to them, they were literally yelling at me that I did not need it because my counts were normal. I said, "I have the orders, the blood tests and that is not what my doctor says." This is the same clinic Hema/onc. Well, he's in hiding, I had to see his associate who says, no, you don't have a low heme count, I said, what about this, and she said, oh that's your OLD one, we have a new one that puts you in the normal range. So I began to think, and realized the system in the United States has us screwed. Guess who owns most of the Center - McKesson......and they have the lions share of pharmaceuticals and medical interests around the WORLD......so its all political. and MONEY. And to hell with us. I will never trust another doctor again, nor provider. I'm dragging my butt around, and making arrangements to see if I can find a medical care provider who is not part of the system. In the mean time they want to operate on a hiatal hernia with ulcers in the part of the stomach that is protruding into chest cavity, because it "might" cause cancer - and there are only two medications for ulcers, which is BS. I KNOW there are more. I tried the two, they make me sicker, and I discovered that the side effects can be terribly rough for SOME people. Anyway. Through with the Prolia, and the horrible thing was, I didn't even need it. Just needed the tumor off my parathyroid so I could heal. I am angry and sad - - and fearful for the future of all sick people in this country.

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Diana~The Dr. told my Mother for 40 years that she had ulcers so she finally went to Denver to have surgery. Doing his Residency was a man we have known since we were born. He told her that it was not her stomach getting operated on. It was her gall bladder and she never had another problem with it again. My Dr. told me it was impossible for me because I was too young so I stopped at the surgeon's office next door and asked him if he would please do the test and take it out if I got sick. I got REALLY sick so he did belly button surgery and I wanted out at noon. He said, no, you have to see if you can keep your food down which I did and I went straight back to work from the hospital. These guys are far from Gods and don't know what they think they know. Teeth are tomorrow$$$. Love, M.

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Judy,

Your shoulder pain sounds like mine. I manage it with Yoga. There is a wonderful Dr. in New York who treats with Yoga (including Osteoporosis).

I believe he is on Youtube; he also has books. His name is Dr. Loren Fishman.

I have had a flare of Interstitial Cystitis. Apparently there are some hidden reports of effects on the bladder. Had I known about that I would never had taken Prolia.

Now, to deal with my teeth. I have pain and sensitivity. I have observed that my already receding gums have been receding at an accelerated rate.

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Judy~ There is a nice osteoporosis med called Calcitonin. It gets sprayed into the nose so no tummy problems, etc. It's OLD and there is no MONEY in it for the Docs so it can be hard to get. My mother used it from 60-96 and I've been on it since I quit Prolia. No problems whatsoever. It also has another name - Myacalcin. It's made from salmon but has no fish smell at all. No smell at all period. Just makes healthy bones. There is a slight chance of basal cell carcinoma in the nose with it but I have never met anyone that had it. I had a huge fall on hardwood on my new hip and nothing happened to me at all. Just got up and kept on going. My mother's was so bad she could not shut a door without a rib breaking. Her bone Dr. suggested it. The older she got the more she fell and never broke another bone. Your best chance of getting it would be by a bone Dr. They make their money through surgeries, not medicines. Be well~

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Hmmmmm! Very interesting. Maybe I have been diagnosed wrongly. Yep 2bd opinion in order. Thanks for info.

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So, I just received my AARP newsletter.
There is an article on the high cost of prescription drugs; no surprise that AMGEN has the highest profit margin, at
42.6% !!!. In comparison, EXXON, has a profit margin of 3.7% !!!!!!!!

Well, I don't plan to contribute to that profit margin any longer.

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Thanks Pood, I'll check out calcitonin.
As to magnesium that you mentioned, I am wondering if I should have my magnesium levels checked first. There would be no point taking it if I don't need it. And, if my levels are ok would taking it create more problems. I've got enough already and I react very badly to so many meds.(obviously!)
All of these problems associated with Prolia has caused me to suffer terrible anxiety and depression as I have had to curtail so many activities that I usually have done ! I am currently on a new one called trintellix ....the lowest dose....for over a month and think ill have to stop it as it makes me so tired and nauseous . It has helped with anxiety but I am groggy all the time. Soooo, I'm a classic case of drug sensitivities. Never used to be but I guess as you get older your body's reaction to certain things change! That's enough to cause depression!!

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