Prolia Side Effects (Page 111) (Top voted first)

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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Poor I guess it makes sense but I think it's different if it's caused by a medication maybe there's a chance they will go away. I hope so. Jet pray you don't get type1 because that is a living hell that will never go away no matter what causes it. I'm sorry you were sick again. I hope you feel better soon. Just dtck to gf. Hugs

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You are the most comforting Pood, thank you as always and I always feel your hugs, hugs back to you

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Skitty~Celiac is Celiac. It is a low score of the A immunoglobulins. I know this bout is not as low as before as I can have some wheat, like 2 small cookies, and that's it. It's more of an allergy now than being full blown Celiac Disease. As the tests have to go to special labs I don't know when we will get it back. I also requested TSH too. That may give me a clue as to why hair is still falling out after Prolia has been gone for so long. Be well my friend!! Pood

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Thanks. Now to wear it for the long term. Still breaking out on back. 70 yr Olds don't have acne. But can role with that. I'm just still shaking my head over Dr's insisting Prolia and Reclast will cure everything. I would be interested to know if any other Prolia person had soft tissue or gland tumors show up during or after treatment.

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Hi Skitte~Type 1 is when we are totally unable to make insulin at all. It's generally in young children and juveniles. Type 2 is when one can make a little insulin because the pancreas jumps in to help. Unfortunately, it cannot make enough so insulin inj's. and food restrictions are in place for both types although one should always have a can of real pop in the frig in case it goes too low so one does not go into a diabetic coma. One of my dear friends and her sister got the flu really badly when they were 10 or 11. My friend needs a new kidney and is doing the dialysis at home. Her daughter donated one so she could get higher on the list. Diabetes 2 killed her kidneys. Now comes my thinking on this subject -- as something like the flu can cause Type 2 in two sisters at the same time what could certain medications do? There's a large difference between the flu and Prolia. With the flu our immune system is in the battle fighting to win. With Prolia, we don't have much of an immune system to go in the battle to win. What's going on with you and diabetes? Hugs~

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Pood, I know what celiac is. It's an autoimmune disease which is hereditary.

Once you have it it never goes away normally. Like type 1. But by eating gf you can control your symptoms and heal the damage to your digestive tract. If you really have celiac you can eat any gluten at all even if you don't react badly or at all. Your body will start attacking your digestive tract where the gluten is.

That is what I'm trying to say here: celiac isn't nimskky caused by drugs but if it is maybe in the case of prolia it may go away or go into remission. But you have to eat no gluten and avoid cross contamination too. Type 1 will never get off of insulin unless the hate totally cured by some means. Once the body attacks the beta cells to the point that you can't produce any insulin they don't recover. Maybe one of the cured people are researching will change that one day. Most of them are trying to add new beta cells and protect them from further attack though. It's still not a cure which would be to stop the autoimmune reaction.

You don't go from celiac to an allergy or a sensitivity. An allergy is different from a sensitivity and from celiac. They may or may not have some similar symptoms but their cause is different.

I wrote another longer post but it needed to be reviewed fur some reason.

I hope we all heal. I hope one day I don't have to take insulin anymore or there is done better treatment to live a normal life.

Tegan, I'm so glad you didn't take prolia either. I'm sure Ide be very, very ill or gone if I had. It is not worth the risks. The bd it builds is only brittle bone built up on dead bone so you're more likely to fracture. Once you stop prolia any bd that built up is lost in 1-2 years.

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There are several diagnostics done now for celiac because some people don't show positive on the most common one. The real problem is that you can show negative in the blood work and a biopsy if you haven't been eating gluten. So you might have it and not never really be sure. Which is what I'm worried a out in my case. I'm not going to start eating food again just so I can show positive for this or cause more damage to my digestive tract. It's possible I have sensitivity and not true celiac and it could still be causing all of these problems I'm having. So the best thing is just to avoid it totally but it's really hard to avoid cross-contamination when you live with people that eat gluten and when you eat out.

I guess that is the only thing I can do when I'm advising you not to eat granola anymore if you've come back positive for celiac because if you start eating it again you're going to get your symptoms back all over and get damage to your digestive tract. I hope your TSH evaluation tells you something. Just remember that even if it's in normal range you could still be having problems with your thyroid which can cause hair loss.

Mine was in normal range but I still have anti-bodies for Hashimoto's disease and I started treating it before things went out of range in hopes of preventing further damage to my thyroid glands. I had a scan of my thyroid gland which show that it's grainy which is typical of Hashimoto's thyroiditis. Plus my family has a history of autoimmune thyroid disease my grandfather had Graves' disease and my father also has Hashimoto's- more advanced than mine.

Celiac Disease Antibody Analysis

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@Sheri~Hopefully, with this they will be able to figure out why and stop it so you can have a 'normal' life. I don't know if they recommend osteoporosis meds or not. I would stay clear of most of them and Prolia for sure although there are people that take it and have zero problems. We, here, seem to be the unlucky lot of them. The lady my Dr. was referring to about taking anti-acids had a bone scan of over -3 and that's REALLY BAD. I see him on the 7th, I think. I'll ask more questions for you. He's not a natural born American so he has an accent and speaks so quickly I can only catch about 1/3 of what he says. He is the one with a brain and was upset they gave me Prolia. I remember him saying: "Be very careful now because your immune system isn't working well'. The only one that told me the truth.

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I cannot find my original post from July, since my second Prolia shot. Sorry I forgot the date of my last shot. Anyway I have had a fractured femur in my right leg. This has been going on since January of this year. It still has not healed. I'm still using a walker, and cannot drive. I've also had the urgent need to pee and lower back pain. I've had stiff fingers and shortness of breath. The thoracic surgeon found a growth between my lung and thoracic bone. Biopsy was not definitive. I'm going to have surgery at the end of September to have it removed. It's about a four hour surgery. I have read side effects like mine but not of a lung problem. Could this possibly be related to Prolia?

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Hello, Trish! How are you? I'm very sorry about the problems you're having.

Yes, regarding the femur fracture, that can be a side effect of Prolia, as reported by the FDA. as well as the increased urination, lower back pain and finger stiffness.

However, no it has not been reported as causing shortness of breath and such growths, though it has been associated with Basal Cell Carcinoma.

Are you on any other medications?

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Hi Trish and welcome~Yes, Prolia causes legs to break for no reason whatsoever. All you need to do is take a normal step and it's broken. Has your Dr. checked you for a bladder infection which is very common with Prolia? Diana just got home from having para and thyroid surgery. It all went to the lab to check for cancer and the results are not back yet but she has done a 180 from what she was before the surgery. If you have a really nasty infection, it could cause soreness there. I have not heard of fingers before. Can you please give me a better description because it can cause nerve damages going in those areas. We have had a couple of people with that specific problem. Your immune system is not very good right now. Lower back pain in the spine is normal with Prolia. Since leg is not healing, you may have to have a plate put in and screwed in so they do heal together. Talk to your Dr. about that or ask to be referred to an Orthopedic Surgeon. It's not a good idea to have surgery while on Prolia but that's a decision they will have to make since it is not healing on its own. It should take 6 weeks for a break to heal together and add a few more just so it stays that way. I'm sorry to be the bearer of such bad news but the truth is the truth. The only good news is the broken leg qualifies you to sue Amgen, the corporation that makes Prolia. Be well~Pood

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Pood, I have type 1 and I got it as an adult! It's not a juvenile disease that is a big fake out by the jdrf for many years to raise money for research. They now have in their website that 1/2 the people in the U.S. Diagnosed type 1 are over 30 years old! Mary Tyler Moore was in her 30's when she was diagnosed, she's one of the more famous examples. There are 15,000 children and teenagers and 15,000 adults over 30 diagnosed each year. Actually there are probably more adults who get type 1 because many are misdiagnosed as type 2 simply because they are adults. I'm very sick of having to explain this to people but especially to doctors and Medical professionals who tell me it's so rare for an adult to get it. It's not rare at all.

So read up on it and please educate yourself. I almost died because my i**** doctor didn't figure out type 1.

Please read up on autoimmune diseases vs allergies too- and sensitivities. There is a difference between them. The antibodies for celiac for instance are used to see if eating gluten free is helping control the disease process because they often go down when people eat gf. If you have the antibodies I wouldn't eat any more gluten or you will end up very sick again. Celiac doesn't turn into an allergy. You have to eat gf forever. Unless you're one very lucky person who goes into remission. I've never heard of that happening but maybe in the case of celiac caused by prolia it can.

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Hi. Anyone qith perioheral neuropathy after prolia? My mom got it weeks after her prolia injection and has been suffering since then. We have found that there is slow or not enough blood flow or nutrient flow to her peripheral capillaries (microcirculation). We are trying to find out how prolia could have caused this so we can try to fix the problem. Has anyone experienced or heard about this or could guide us in what to do?

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I just returned from an endocrinologist because my thyroid has not moved in almost 2 years from being on the extremely low side. I had a regular Family Doctor for 20 years who would order me the levothyroxin and we would then get right again in my thyroid numbers in just a couple of weeks if the numbers went bad every few years..
For the past 2 years we have used, 150 mcg Levo, 137 Levo, 170 Levo, 185 Levo and now the new endocrinologist put me on 125 Levo with a checkup in October. She says there is a lot of things we can go through to find out what the problem is, and I only said that I have never felt so bad in my life even after being diagnosed in 1985.
I never even mentioned the prolia to her but she did ask me why I felt I was so cold all the time. Because it hasn't been proved yet tied to the Prolia, I told her that I just don't know whats wrong with me. Tests in October and again in December...I hope to come back and tell you how well I am feeling by then. Thank you all

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PM: This is one of the side effects of Prolia.

Have mom checked by her doctor to be sure this can not be anything else. Along with 20 plus side effects I experienced, this was one of them, my hands and arms went numb. It was so bad, I couldn't grip. My hands felt cold. Woke me up every night for over a year, plus. This is my opinion, I think my muscles were so stretched (swollen) that it might have impeded the flow of blood to my hands and arms. My right side was effected more than my left. Along with the burning of my inner forearms and torso and other side effects I was down for the count! Only one inj. of Prolia, no pre existing conditions. Aspirin to pain medication didn't touch the suffering. In the end I just had to ride it out. Been over three years since my inj. and symptoms still linger. I hope her doctors are aware of Prolia. Show them the FDA web site. Report her symptoms to the FDA and the doctors response at: 1-888-463-6332. Doctors are not mandated to report. Don't be surprised if your doctor tells you, "I have never had a patient with side effects from Prolia." Wishing you the best!

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Marti, I was on armour thyroid for appx. 30 years & then all of a sudden the pharmacies told me that it was discontinued by the mnfr., so the doc put me on synthroid since it wasn't available!!! Now I am really confused. What state do you live in - I am in S.C.

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Diana: I have found a site. I am unable to ascertain if this is a law firm or if they are trying to gather information on a possible CLASS ACTION LAW SUITS PROLIA, maybe, they are just gathering information. Reading patients responses are very much like the one's posted here.

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Hi Kitty~Oh Boy Excellent thought for documenting everything. I know a guy in NC but he only does individual cases. The ones that come up on the net that want to assign you an attorney are only interested in cancer or broken legs. We are working on a legal case which means everyone but so far it seems as if Prolia is not on their radar yet. It's too new. Then we have the Statute of Limitations to deal with which in WY is 5 years but all States are different. This is something you can easily check on the net for your State. The i****s are worrying about talcum powder which has been around since about the beginning of time. Hugs~

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Sheri~I asked my Dr. about his previous patient that had your problem and what did he do to build up her bones. He told her to take a very certain brand of calcium and use it throughout the day. He also put her on Calcitonin. This brand of calcium needs no acid to be absorbed by the body. It doesn't have to be taken with food. It is a lot more expensive than store brands tho. He also put her on light weight leg lifts to strengthen the bones in the legs and hips. After she builds up that, then he increases the weights. I had to do that after a knee surgery and I had to be able to lift 10% of by body weight 100 times. Mr. Dr. was not a person to trust his patients to do what they are supposed to do so I had to do it at a physical therapist's office -- like he really kept track of me -- he'd pop in and say how many is this now and then leave to work with another patient. Hope you get good news on your tummy! Hugs~Mama Bear Pood

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Mama Bear, is Calcithon a prescription medication or something I could buy over the counter?

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