Prolia Side Effects Ongoing (Page 7)

I had my infusion Mar 4 2015. I have experienced severe stomach pains, leg pains that wake me up at night, a horrible dry cough, near migraine type headaches, very severe weakness, trouble walking, constipation, had to have dental work that I usually have great teeth, some trouble sleeping. My rheumatologist did nothing to try to help me with the symptoms but my primary doctor gave me medication that help with the stomach pains, take Excedrin for Migraines and enteric aspirin for back and body, and other meds to try and find some comfort. I'm somewhat better than the few weeks after the infusion but still have a lot of problems. Hopefully this doesn't last for 6 months.

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Hi Poodle and fellow travellers,

Was wondering Poodle if you meant the Sjorgens went away or Celiac? Can Sjorgens go away or am I stuck with it?

My best to all. I so wish I had never had that first shot but my doctor was so convincing. Never again.

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Im sorry also
I had discussed PROLIA with my doctor. and had no problems during past years
(5 years). Then on 4/25/16 -WHAM. im still taking tests re edema. I'm not sure that I will ever recover.

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Denise~My Celiac is gone or as my Dr. calls it: in remission. How can it be in remission when it was caused by Prolia and when the Prolia was up so was it. Numerous people have Sjorgrens from Prolia. It seems to be much more common than mine was. I can only hope that it goes 'into remission' for you when your Prolia goes 'poof'. My Rheumy was the one that found it and apologized all over the place for making me take Prolia even tho I didn't want it. She says I have every reason to hate her but what good would that do - just cause me more harm! Once we are free of Prolia, I firmly believe our immune systems will recover and be 'normal' again. Some people take longer than others but it always reminds me of some good advice I got from a previous Veterinarian: "That which doesn't kill us only makes us stronger'. and to that I would add smarter because we know now we cannot trust our Doctors. Pood

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Oh, Poodle and all my fellow travellers,

How I wish the Sjorgens will go away over time but I'm not holding my breath. I think when you've got it, you've got it. IDK, and don't think the "professionals" do either. We were sold a lemon alright.

I'm hanging onto your hope (mine too) that once our immune systems recover (do they?) all will return to "normal". I've also developed Dupytren's Contracture which latest research indicates is also autoimmune.

Get this for a conspiracy theory. Prolia was developed by a bunch of male women haters haha not funny I know. Just so angry.

My hair is still falling out by the brush load and am so fatigued and brain foggy. So many things are going wrong. Now stuck with Interstatial Cystitus.

I'm too scared to take any Osteo meds now and don't know what to do outside of standard weight bearing exercise and good diet. But this doesn't add mass...what do we do?

My heart goes out to everyone. I had Osteo but now I'm a walking wreck...

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Hi Poodle, you seem to have some good knowledge but don't want to bother you but do you know if rapid heart beat is part of this nightmare. Two years now. Anyone know if any legals are going on? They should not be allowed to get away with this. I've got bumps on my gums too. Aaarrrggghh!

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Hi again Denise~I don't mind being bothered at all. When I first took Prolia my heart was very erratic and my primary sent me to the heart docs. I wore a monitor for 24 hours and it didn't act up at all. I also had an echo cardiogram. With me, it was a temporary thing but I do know that Amgen has written that Prolia causes heart problems -- probably by going after a muscle in there as it LOVES to attack our muscles as that is the only place in our bodies we can store any calcium or it could cause an infection in there too. Go back to Amgen's website and check the heart issue. It's a medical word that I'm not recalling at the present -- it begins with an e. Be well~Pood

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Denise~I just checked and yes Prolia does cause that. I would suggest your Primary sends you to the Cardiac Specialists so they can keep a check on that. That is one area of the body that should be monitored by specialists in my opinion to just be safe. It is listed now as a common side effect. Pood

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And, Denise, to date we have not found any legals willing to go against Amgen. We also have to remember there is a statute of limitations in every state and each state may be different. Where I live, it is 5 years from when the problem was first diagnosed. Diana was working on it but she ended up with cancer and is having surgery soon to remove it. I'm going in for more joint replacement so I won't be available either. I believe that Prolia is so new that it just isn't on their radar yet although we know it has killed up to 5,000 people. Hopefully, this answers your questions on where we currently stand. Pood

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Thank you so much Poodle. They were my suspicions too, that is that Prolia is so new it is still under the radar.....and it is not about money...just so angry. No money in the world would have me/us go through this. Is your knee surgery connected to Prolia? doctors are useless. The first symptoms I had were crushing rib pain, bruising and rash. The rib pain grew worse with time and my i**** doctor said I must have injured them. I said that I had not and that even if I had the rib pain would be decreasing with time, not increasing. He looked at me blankly and moved from the topic. Do you know Poodle if numbness in toes is connected? I may have asked this question previously but am unfamiliar with sites such as this and trying to muddle myself around. How do we know that 2,000 people have died? In general, how are you coping? I am so depressed and fatigued. I hope you are doing OK, likewise all of us. This is just so terrible.

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Thank you so much poodle for researching my concerns about rapid heart rate that was so kind of you. I don't know if I've got Sjorgens or not but suddenly out of the blue my eyes completely dried up and am incredibly fatigued. I don't even know who makes the diagnosis - ophthalmologist? We have a good health care system here, but not THAT good and seeing multiple specialists is costing big time. I have rarely seen a specialist in my life of 68 years.

I've also got really itchy feet, itch all over and these little red blisters that pop up on my body. I look like I've aged about 10 years overnight. So angry but trying not to be.

I hope I'm posting properly am trying to work out how this board works just want to check in as you guys are the only ones who get what I'm talking about. I am so sick of it, so tired and depressed. Thanks for answer on legals too poodle. Wonder how I might launch my own action haha sure....me vs big pharma's. I know what the outcome would be.

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I now have a fractured right leg femur bone since Jan of this year. After seeing three doctors they all agree it's from Prolia. I'm also badly constipated, have a frequent urge to urinate, headaches. I went through a lot of testing before the final conclusion. During this testing they found a growth on my right lung which leaves me short of breath. I have no idea if Prolia contributed to this. But now I need major surgery to have it removed by my Thoracic surgeon. I have had several biopsies done, none were definitive for cancer including the PET scan. Has anyone else had these symptoms? I've been using a walker since Jan now I still in some pain after eights months. Can't drive or do much. I'm going crazy. I'm filing a report with the FDA. Should I sue on my own or file with a legal suit?

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Not sure this is actually a reply - I'm hurried with everything between resting. Next week - surgery on parathyroid and thyroid in Tampa. Prolia? Maybe. At least a rapid worsening IF it were pre-existing. Thing is the doctor was still trying to push Prolia on me, now Reclast. Which I believe is Prolia's evil cousin, having even higher percentage of death per thousand patients. Both these drugs under another name are being used to treat cancer. So, next week I will be in surgery for parathyroid and thyroid. Writing this to caution those of us who have been on Prolia, please research the symptoms of parathyroid tumors and also thyroid nodules. One of the nodules on my thyroid looks like "malignancy." I'm not scared, too battle scarred for that, BUT - all these symptoms came after Prolia. Personally, (not substantiated) I believe that Prolia exacerbated any condition that may have been slow or dormant, waiting for the right conditions to blow. So I have been sidetracked from searching for Attorneys, litigation, or otherwise. Will post again a while after surgery. One thing I am sure of, anyone with pre-existing autoimmune issues should NOT take Prolia! Many of the symptoms we were told would be fixed by Prolia (and Reclast) are those of tumors on the parathyroid which are messing with our hormones and body chemistry, and these are any easy fix. Very rare for the parathyroid to be cancer. However, the tumors and overload they cause on the system can create cancer and will if one doesn't die first of hyperglycemia. Have learned a lot on this journey. So, over and out, and may all find healing and relief from the awful thing! I believe Poodle has more info on tumors, etc.....from Prolia. AND if your doctor won't listen, don't give up, keep researching and find a supportive doctor!!! Or even better, doctors!!!

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So sorry. My repercussions not as sever as yours, but don't think I'll ever be as well as before the last PROLIA SHOT IN April. I've wondered about litigation also; but don't know where to turn. Now I am seeing a cardiologist (referred to by my primary doctor regarding Prolia).

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My bone density report showed that the bone loss in my hip was not good. My spine is fine the report also stated that in 10 years my risk is 20%. My family dr didn't think it was serious but my gyno did. I did research and saw very bad side effects but somehow I was pressured into taking the inj. Sept 13/16 was my first and LAST shot. I have general body aches. Numb feeling in arm and legs. I'm wondering if these side effects last 6 months. I'm angry with myself because my gut feeling was to keep away. Only after I received the inj. did I read the patient stories. My doctors both told me most people have no side effects. I think prolia is the devil in disguise. Also I take 10,000 ui vitamin D once weekly. I'm very sensitive to some meds so I won't be taking the other osteo meds on the market. Now if I could only turn back time!

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Sjogrens can be diagnosed by a simple blood test ordered by your GP. I was run under CT scan after CT scan for 9 years trying to determine why my right paroid gland swelled and grew very tender every 3-4 months. Pain and swelling would last for 3 weeks. Finally one dr though to run the blood test for Sjogrens. Yes... it can give you red itchy feet but also SS will bring on Raynauds which is related. All this really got worse after 2 Prolia inj's. No more Prolia. You can control both SS and Raynauds with diet and no meds. Stay away from the meds. Good luck.

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Well said and well written. Your response should resonate with many people!

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Denise~There is a new legal advertising on TV. I think I might give them a call and ask if they could possibly be interested in a legal suit against Amgen. Like you, it's not the money. Money cannot pay for what Prolia does to us. You should also be on oral Prednisone for your rash. I know - bad for the bones but with Prolia one has to fight the devil with a different devil. It's not going to hurt your bones now that you are on Prolia. It can only give you relief from the rash. Someone some where should be giving you real pain meds. Do you have any Pain Specialists Doctors where you live? You need to get in ASAP if you do. You need a referral from another Dr. Ask around and find out if there is one near you and then ask for a referral. Some of Prolia gets better in the 5th month. Other parts do not. I am still on meds for my back as when I try to lie down in bed my spine feels as if it is breaking. Prolia has zero to do with my knee replacement which has not occurred yet. That is strictly osteoarthritis that eats of cartilage so my knee is bone on bone now. Soon, that will be changed and I'll have a nice new one. I don't know about other people here but my hair is still falling out. I check it well and it is healthy hair that is falling out because it has it's follicle attached to it. My Dr. just tested my thyroid gland and it was perfect as is my blood so it just has to still be Prolia in me. Prolia is biological which means it has half lives and half lives last into infinity. I'll be happy to see the day when only one molecule of it is left in my body if I live that long. Others in the back pages have written about the numbness and tingling in the hands and feet. One of them was a man called RM and I don't remember who the lady was. It's back about a year ago or so. These pages are full of problems and information if you have the strength to go back and read more. Eye problems are supposedly only cataracts that Amgen is admitting to. I got that too. The Celiac is back again for some reason. I don't understand this at all. My Dr. tested my IGA and it came back fine but told me there is a 10% chance of error so I told him he had just found one of the 10%'s. I don't want to eat more gluten so they can do further testing. I know what happens when I do.

Go find some Docs that will give you what you need now. You really should be feeling 100% better in the 5th month but we are not all cookie cutter people. We are all different. I don't know for sure if your autoimmune will stay in remission. It may be like mine just did and come and go at will. I thought for 100% sure I had that one beat but here it is again. Sorry for the bad news but please get into specialists. Is there an cataract surgeon near you or a retina specialist. They know much more about eyes than anyone else would. Are your cardiologists happy with all your test results? Please bother me any time I can be of assistance to anyone here. Been there. Done that and still have problems 18 months post 6 months of supposed Prolia inj. You can take Calcitonin when the Prolia is up. It's quite safe. A very small percentage of women get basal cell carcinoma from it, but that is easily taken care of and it's slow but sure. I just fell a few weeks ago and hurt nothing so I know it is working and my Mother took it until she was 96 and finally died from her heart. She never broke another bone in her life and she was 70 when they put her on it. Docs don't like it because there is no money in it. It's old. Mine actually told me I was too old to have it again so I got it from another Dr. And, again like you, I was pushed into Prolia against my better judgment but she swore up and down she had never had a problem with it. Well, here's the problem and it's a big one. She is very much afraid I will sue her but what good would that do me? NONE! I firmly believe that Prolia should be taken off the market in ALL countries. Even Amgen knows it is not what they thought and are busy cooking up another one. (NY Times). Make sure you take 500mg minimum of Magnesium every night when you go to bed. If possible, double it to 1000mg. You may want to stop at the pharmacy and pick up a bottle of salt tablets too. Only take one for 5-7 days and then stop. See if that helps a little with the numbness. They are kept behind the counter so you have to ask for them. Be well~

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First and ONLY shot September 2014. Never again.

Things that have stopped:
Crushing rib pain
Bruising
Unusual bleeding
Rash
Red spots/blisters

Things remaining:
Recurring UTI's that have now produced complications with urethra. Might have to self catheterise if no improvement.
Sjorgens Syndrome
Cataract (just removed)
Weight loss
Hair loss
Tingling in legs
Neuritis in my toes (lessening)
Depression

Doctors still do not accept that it is Prolia. I had NONE of these problems pre Prolia with ALL of them occurring directly following my first injection.

My 92 year old mother has SEVERE osteoporosis and is just about bound to her chair and can barely walk. The "hump" on her back is enormous, and I do not want to end up like this but don't know what else to do. My "appearance" is much more aged.

Can only think of diet, exercise, Calcium and Vitamin D. and all of the natural ways in improving bone health. Any suggestions fellow travellers?

This is over two years now and am so tired of it. I don't think the bladder problems and Sjorgens will "go away" with time. Think that when you get them you are stuck with them?

Am so depressed.

My best to all.

Denise

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I have a similar list of lingering symptoms from Prolia. My single shot was January 2016 and I am approaching my 1 year post Prolia benchmark. I have come down with IBS with diareah, copd which is now improved, sjogrens, muscle and bone pain, muscle weakness, chronic fatigue, mouth sores and skin, hair & nail issues. Approaching year 1 I am feeling better than months 1-6. I too, find it hard to believe everything will go away... I'm exhausted and hardly recognize my life... worst thing I ever did- with support and confidence of 2 doctors - was Prolia.

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Arlee~your body can only handle 600mg of calcium at a time. Doing a large amount weekly is just wasting it and your money together with any help you get from it. You can take it three times/day with something acidic in your diet like a small glass of OJ. That gives you a daily total of 1800mg. The Vitamin D is measured in iu's not calcium. What country do you live in? This should be standard for the US, Europe and Australia. My current calcium has 800 iu of Vitamin D3 in it and taking that 3 times a day is a good amount since it is basically winter where I live I don't get any of the 'natural' from the sun. Also, when a person is very constipated the bladder has a very difficult time emptying itself and that could be some of the cause of your problem plus the fact that your immune system is highly compromised. Also, check the net to see if Sjorgrens is from DNA or if it is from the Prolia. If you have any tiny defect in your DNA, Prolia will take it and turn it into an autoimmune disease that can go into remission and return whenever it darn well pleases. Stop being depressed. All you really need is a real Immunologist. The problem is finding one. Hugs and be well~Pood

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