Prolia Side Effects (Page 76)

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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Pood, so sorry to hear you were sick again what is GF?

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I also had my one and only Prolia shot in January of this year...this is what I've experienced the last 8 months: Fatigue, dehydration and leg pain first of all, then a spot on my back(not a mole) was found to be melanoma in March. I then had 2 UTI's in May and June(NOT prone to them at all)in the following months. Now I have shingles! It really makes me wonder what Prolia has done to my immune system and what else is going on in my body because of it. I know this is not a coincidence as I've done nothing different.

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Treva~your immune system will be lessened ONLY for the time you are on Prolia. When the Prolia leaves, your immune system will be rebuilding itself. I just found out yesterday that autoimmune disorders leave with Prolia but can reoccur again at any time for any reason. Is leg pain cramps or pain? If it is pain, itself, you should be X-rayed or CT scanned to make sure you are not getting a break. Ever so sorry about the Shingles. That is real pain I never want to know. My Grandmother had them badly and they hurt her until her last day on this Earth. I know Docs can do more for them now tho. Hang in there. You will make it! Be well~Pood

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Sheri-GF means gluten free. I can only eat foods made with rice flour and cannot even sniff anything with wheat, barley, rye, etc. Am allowed rice only. It's irritating because the stores mark the GF food up 4 times to take advantage of those of us that cannot have ordinary food. Just came in to look up my Dr's phone number to tell him he will know for sure when the test comes in. I already know. Did not have the constant vomiting with this one tho, just severe diarrhea. Miserable Prolia poison. Hope you are doing better!! Mama Bear

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I have several friends who are doing very well on Prolia but I have opted not to take it even though the last bone test said I have severe osteoporosis. I would be the one to have all the horrible side effects or not but not willing to take the risk.

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Mama Bear I feel so bad for you, I am still have issues with my acid reflux, this week going for 24hr study. They stick tube down my nose into my esophagus . I wear a monitor, for years I have been taking medicine for it and that medicine causes bone density loss

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@Skittie~Celiac Disease is one thing and an allergy to wheat products is another. One can have one without the other. Prolia causes autoimmune diseases and they are no different from any other autoimmune disease. Does this make sense to you? Hugs~Pood

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After a miserable mess with Prolia, and then 17-18 mos. later being diagnosed with thyroid disease, and having just now come back from Tampa where I had minimally invasive surgery to remove tumors from Parathyroid and Thyroid, I have some good news perhaps for some people. The tumors have gone to labs for a check on cancer. But all are out - had a sistimibi scan right before surgery. I'm tired, long long drive, but feeling good - all pain from bones is GONE! And a lot of other pain. I'm on calcium for about two weeks until the remaining healthy parathryroid glands kick in, then I can cut dose way back. Most patients regain a good deal of bone density within two years I'm told. So I'm going to Primary, get scheduled for a DEXA with plans for another in two years. Have some strength to regain, and hope to be back in Gallery on duty in about 10 days or two weeks. So, I'm wondering - - did the Prolia cause the tumors? I may never know. I've got a feeling -some drugs that are made to treat cancer, could they possibly cause cancer? I think Prolia's cancer treating name is Denusumab - Poodle, do you know? All I know was when I took that Prolia everything in my body went crazy. In fact, the right hip that was not allowing me to walk after the shot, and was diagnosed as burstitis, and eventually allowed me to limp around, quit hurting totally, as did my upper arms, after the PT and thyroid surgery. So, I guess an overflow of the PTH from the parathyroid is what was wreaking havoc through my body. As I related my history the surgeon was just shaking her head. Is the nightmare coming to an end? I hope so.

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Hi Diana~I'm so happy to know that all went well. You have been in my prayers old friend. We have cancer cells in our bodies all the time. It is the job of our immune system (T-cells and T cell helpers) to seek and destroy what is not supposed to be in our bodies. As Prolia diminishes a lot of our immune system, it cannot do it's job correctly and cancer cells are allowed to stay and multiply. Thusly, we can easily get cancer. It reads as if you are now a totally renewed person from the one before the surgery. Unfortunately, MD's will not check our T-cells or T-cell helpers without a high suspicion of AIDS. We just have another one here that just got melanoma. Denusab is just a generic name from Prolia. It's twin is Xgiva that is used for cancer and has a lot more of the 'active ingredient' (Chinese hamster ovaries) in it than does Prolia. I 'think' Xgiva is for bone cancer only. You have just made my year by coming back so well!! Now that you are feeling well, find us an attorney! You could hardly even walk before. This is truly amazing. If people here knew what I know, they would say it's a miracle and it truly is. So very, very, very happy for you. Now back to art, gallery and life as it should be lived. I'm so happy you went with your better judgment to the best surgeons. Hugs~

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I hope your story of Prolia is ending in a heathy chapter...sounds like you are moving onto an exciting new chapter...my mom had whopping cough X-ray treatment as a kid which made the thyroid and parathyroid go crazy and grow tumors and make her so very suck. After her surgery it markedly improved. I brought it up to My docs but they said my thyroid was no connection to my Ostepoperoisis.... So glad you are feeling better!

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Hi Sheri~the anti-acids cause calcium to not be absorbed. For calcium to be absorbed we need an acid stomach. My Dr, had me taking calcium with any kind of Vitamin C as that is an acid so it would get absorbed. I was taking 600mg four times a day. When I just had my blood tested last week, calcium was a tiny bit high but not enough to worry about so I'm going to cut it down to 600 mg 3 times a day. My Dr. had a patient that was younger and her bones were falling apart and she had been taking the anti-acids for her stomach for years and years. I don't know which ones as I didn't ask but now I know the reason. There has to be something they can do for your tummy so that it is not overly acidic so your body can absorb the calcium you need and just drinking milk, yogurt, cheese, etc. is not sufficient. The testing should be painless as they spray it with a numbing spray so zero worries about that for you. Then, hopefully, they can figure out the reason for your current problem. I'm happy to know you are seeking out specialists. BE WELL!!!!! Diana is doing well now so I'll put you on my prayer list. Hugs~Mama Bear Pood

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Yes I know pood, I know a it all of them. I don't have an allergy. I either have celiac or I have gluten sensitivity which isn't an allergy and which causes similar problems as celiac such as inflammation which I have. I already have several autoimmune diseases unfortunately of which type1 is the worst. I also have been on acid blockers fur years but I don't believe they cause osteoporosis. My osteoporosis as I mentioned before happened in a 3 year period from 2009 when I went into full meno to 2012 when I had severe osteoporosis. And I was on hrt for 1:5 years of that time which helps prevent it. So something is very weird. No one goes from normal BD to bad O in 3 years. It has to be celiac, diabetes or primary hyperparathyroidism causing mine or all 3 or something else maybe. Wtf? I'm glad your feeling better Diana after your surgery at the Norman center. I just wonder if that is the case for me too. My muscle mass is waist get away and I've lost 14 lbs. Bg is high all the time or crashing. None of it makes sense. I feel like I'm starving to death. I'm excreting a lot of calcium in urine. I absolutely have to stay on ppi or my stomach etc. gets much worse, I can't eat and I end up in the hospital. I'm sure I'll get cancer if I go off those drugs. They told me to stay on my Meds after the biopsy results. Did you have a scan that showed tumors before the sestamibi? My endoscopy refuses to do one.

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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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