Prolia Side Effects Ongoing (Page 9) (Top voted first)

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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REPORT

If you are asking me... I wanted to see a rheumy at Mayo in Jax but their quota of Medicare patients if full in the rheumy dept. Makes no sense because if you are old enough for Medicare, you should be seeing rheumy. Because the bone tumor (it is attached to and growing from the bone around my eye socket) was eye related (not really) but that was the only dept at Mayo that hadn't used all its Medicare credits. I was willing to take it as there is a two year wait for a rheumy there and they will not start a waitlist. I figured if I got in the door, I might be worked into the system. Th ophthalmologist who saw me was recommended as knowing about bone tumors. Once I got there she said she knew nothing about them. She studied all my records and scans and decided that it was probably from the Prolia, but she would not enter that in my records. Since then I have been to two top specialists in eye socket bones. They both agree...the ONLY thing that would cause the lump to grow AND the timing of the lump showed that it had to be Prolia. But they won't sign for sure... as other than timing and no history of this in the past, they can swear to it being Prolia. Since then -after a 15 months off the Prolia, my density dropped back into the danger zone. A new rheumy frustrated with my history talked me into Forteo. I did 3 daily inj's, and the bone tumor began to throb and ache and press on my eye. I am looking into taking Strontium over the counter, now. I must do something and I am very angry at the drug companies.

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I will NEVER take Prolia shots again. (I have just posted a detailed report in a related thread.)

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Hi Daisy - hi everyone. I think I've got Sjorgens Syndrome too. Dry Eyes, numb toes, depression and fatigue. It has not been diagnosed but it adds up and guess I need to see a rheumatologist. Dread going back to my general practitioner as he now treats me like it's all in my head. Have also developed Dupytren's Contracture which is another connective tissue disease and now being considered as autoimmune. I have not been the same since I had my first and LAST Prolia shot in September, 2014. Bladder infections which now appear to have shifted to Interstatial Cystitus. I have had so many things go wrong too long to list. Prolia has wrecked my life and to make matters worse doctor's don't seem to believe or care. What on Earth can I do? I'm now talking nearly two years after first shot.

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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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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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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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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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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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Hi pood-
Can you tell me what kind if support or help to ask an immunologist for with respect to my ongoing Prolia side effects? I have read your notes for the past 8 months and am thinking and hoping I might get some support from an immunologist. I jtst don't know how to move forward. I reacted terrible to the Prolia- severe itching and rash was crazy in the beginning. Now it comes and goes. Pain in bones and muscle, sjogrens, uti, upper respiratory infections, rib pain, shallow breathing, gluten sensitivity, hair loss, weak muscles, gerd, cramps, tingling in hands and feet, ringing in ears...fatigue and sleeplessness... I had rapid weight gain of 35 lbs at first but that weight is coming off. Thank you! Jan

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So it is now March 2017-
Where do you stand in your healing from prolia status?

I am January 2016 prolia infusion. 15 months post prolia. I have your symptoms continuing now plus a few more. Sometimes they seem to cycle through periods of flare ups.
Recently I broke out in yet another rash that is going nuts. Have a dermatology appt in 2. Days.

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I totally agree with you. A medication that is supposed to help you gain bone density but at the same time destroys your calcium...what does it mean? A medication that supposedly “helps” your bones but at the same time causes osteonecrosis (bone death)... How can someone explain that? This medication should never be taken by someone who had cancer. It literally gets rid of he T-Killer cells, the frontline of protection that our immune system has against cancer!!!!! It may also cause cataracts, how do you like it?

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I have been on Forteo and have had no problems other that the aggravation of having to give myself shots everyday. I have been trying to decide if I want to take Prolia so I wont have to have an injection every day. My rheumatologist told me that she would prescribe it for me. Reading all the side effects and the percentage of probability of symptoms I am not sure this is a wise decision. Has anyone else taken Forteo and changed to Prolia? I have severe Osteoporosis and need treatment. Any advice would be greatly appreciated.

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Daisy, after reading about your tumor by your eyebrow where a prior injury existed, I also have that same type of lump coming up on my nose... for the 4th time. Years ago I broke my nose and had two surgeries to repair a deviated septum. I believe that prolia is depositing this fleshy substance to compensate for bone loss in my nose. My ENT physician believes the same.
As I mentioned in my previous post, I reported this and my side effects to Amgen.
Stay away from Prolia!

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Went to Dentisr yesterday. All bottom teeth has got to come out, All the bone is about gone so the teeth are lose. Have a Leason (Sore) on my bottom gums that want heal. Has been cut out once , now back neurosurgeon will cut out and send to Lab.

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Re: Poodle (# 6)

Had my injection on june 22017.Still have bad lower back pain and muscle spasms. Still on med for pain and now a med for the muscle pain. My hair has slowed down from falling out. Gastric problems ongoing.

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