Prolia Side Effects Ongoing (Page 7) (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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Canadian~short of breath? I think you need to get referred to a Cardiologist right now. Prolia causes heart problems so it's best with your symptoms to get that checked by a real professional. It's easy for them. They do an ultra sound of your heart and give you a little monitor to wear for X amount of time that keeps very good track of what your heart is doing. Prolia can cause an infection in the heart area. It's something called maybe something like endocronditis. You will probably have to have a referral from your current MD to see a Cardiologist. I have no idea how to spell it. You will see it listed as a side effect on Amgen's website. Pood

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Interesting today when I went to pick up a normal Rx. There was a notice from Amgen in my sack that I've over due for my next Prolia injection. There was a number to call to opt out of getting the reminders so I called it and my phone said: US Government so maybe the FDA is pushing Prolia even after all the calls I've made to them and forms I've filled out. Why else would I be getting reminders from our Government. The next injection of Prolia will be over my dead body. Geez!!!! Pood

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Hey all - pay attention to Wise Up Janey. Stop Prolia ASAP. The more you take the worse it gets and the longer it remains in your system. Even when Prolia goes "poof', the side effects do not. They linger and linger and linger. Be well all~

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The bone tumor on my eye socket continues to grow. A second one is developing over the other eye. The consensus (without any of the doctors putting their names to it) is that it is probably the result of the Prolia depositing bone matter wherever it felt like. In my case on my eye sockets. I will have a biopsy in January. Meantime the pain increases and my vision decreases. The bone tumor comes up in the ct-scans as growing. :(

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Daisy- sorry to hear that it has developed the bone tumors in your eye sockets. Hope you will get a speedy treatment for it. I had an eye pain, felt like the pain came from the eye socket, for 2 days and the pain is gone now leave the muscle around the eye swallow tightness. Also I saw your old posting here that you also had the Sjogren disease developed. What is the sympthom: dry mouth and Dry eye? Are you feeling better now for that disease. Thank you !

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Daisy- the Sjogren could cause hydroxychroni could cause eye retinal problem. I get this info from google web. Bless you!

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Daisy, you are now the third victim with Sjorns that I personally know of. One person had to go to Mayo for a 'proper' diagnosis. I got Celiac Disease from it which is also an autoimmune disease. The best I can tell you is that it will go away when the Prolia goes away. In the meantime, you will be having a lot of bone removed. As one of the previous victims with Sjorns wrote: "Anything that causes this has got to be out of control". I totally agree. Just be thankful it will disappear. I am so very, very sorry for you!! If appropriate, please call Amgen and the FDA and it would even be better if your Dr. did it for you. Be well~Pood

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Canadian~You may want your Doctor to test your immunoglobins too. They may lead to a reason for the nausea, etc. you are feeling. If anything is brewing in your body, this test will show it. If all comes back normal, be happy. If not, follow your Doctor's orders. Be well~Pood

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Thank you for all your comments. The Sjogrens I probably had almost all my life. The symptoms got worse as I got older. If it were only dry eyes and mouth that would be nothing. It is extreme exhaustion that comes on all of a sudden, so badly I can barely breathe. Very bad rashes. And glands in jaw that swell so painfully I can barely think. The swollen glands last for about 2-3 weeks and occur every 3-4 months. I have had every conceivable test. The diagnosis of Sjogrens came via a special blood test. The tumor on my eye socket is solid bone attached to the eye socket bone where your eyebrow would begin. After the first Prolia shot within 2 months the bone around my right eye got very soft and then a pea-sized lump of bone appeared. It did not come up on the X-rays. After the second Prolia shot the pain in the bone around my eye got worse and the lump grew to the size of a lima bean. It is now spreading to my left eye, duplicating was occurred on the right eye. My eye balls are okay but are starting to feel the pressure from the growing bone mass above my eye. No one doctor will say positively that it is the result of Prolia but to paraphrase all four specialists... It seems to be the only explanation for such a wild growth of bone matter would be Prolia out of control. I feel since my bone density increased as much as 24% in less than one year - after the 2 Prolia shots, it has to be the Prolia. Any medicine that makes that radical a change in your body- that fast, can't be good. Keep me in your thoughts and prayers. I am going to another specialist 4 hours from my home. He will be doing a bone biopsy...taking a slice of the bone-lump...and leaving a scar...guaranteed. I am getting bad headaches over my eyes, which did not occur before.

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Poodle- the dr already prescribed me the Mylan-lansoprazole 30mg for my stomach and Standardized Sennosides 8.6mg for my constipation 3 days ago. I had taken 1 mylan-lansoprazole, and calcium's, then next day I felt the stiffness in my body. Went to see doctor again, he said my blood tests were ok but asked me to stop taken the cal and vitamins for 2 weeks (would this be dangerous if I don't take the calcium) and see. Today I started to take 2 tablets of Standardized Sennosides and see would this help me. Test for my immunoglobulin, is this can be done by blood test. I am worry that he would think that I am challenging.

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Canadian~Yes, it is just a blood test that will give you and your Dr. more information about what is going on in your body. In no way should it threaten the Dr., only to give more information. The labs sends the results in a format that you, yourself, can read. If there is something very unusual in there, then your Dr. would have to contact an Immunologist to help him help you. Most of it is basic biology that any Doctor can figure out. She called me when she got the results in and also sent me a copy. That took care of one huge problem with Prolia as I knew exactly what to avoid. Be well~Pood

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Daisy - best to know for sure what you are up against and you can tell them that other people on Prolia had the same problem. The last one was on the nose so it is much easier to work on than bone above the eye. It started out like a small pea and ended up being a large lima bean. Just find the very best Opthomologist you can find. I wonder why you were lucky enough not to get the dry eyes and mouth….just Prolia gone crazy. Amgen states that if we don't get the next inj., the bone will start to reverse itself. I wonder, really wonder, if that includes where it is not supposed to be. Unfortunately, the others are not far enough along yet to know or I would ask. I am so very, very sorry for you. This is a horrific event. You can wear your scars as 'battle wounds' for all to know WHY. Scars do fade over time too so I wouldn't be very worried about having them at all. Baby oil and coconut oil do wonders for scars too. Hugs and be well~

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Are we providing too much "food" (calcium + vitamins) for this poison chemotherapy Prolia to live stranger and longer as to develop such uncontrolling severce side effects. What are you eating Daisy? My recent side effects, soar throat, right eye pain for 2 days, blood vessel broken in left eye last night, stomach reflux, constipation, light fever in day time and sweating sudden awaken at night.

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Thanks Poodle. I will see doctor to find out.

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I have 3 specialists working on it. They are all on top of it. I have had so many tests, I have albums of my copies of my records. You are reading my mind, today. Coincidence. I HAVE to take calcium as I fractured my spine in 5 places in 2013. I must have the calcium. And I have Sjogrens which brings it's own set of problems. BUT as the bone tumor grows and hurts so much today and since the Prolia remains in your system for 7-12 years, I starting thinking perhaps I am feeding the tumor with the calcium. It was an odd thought I had today. Since I will get the bone biopsy Jan.19th I might stop the calcium. The only thing with that is... I get bad leg and foot cramps when I don't take calcium. In response to what I eat. I only eat one meal day. I have 1/2 of an organic chicken breast and kale and cabbage salad. But now I find out that kale contains oxalates and blocks the calcium from being processed. No problems with kidneys or any other organs. Just the tumor(s) made of bone and growing as part of my eye socket bones. ??? Thanks for your comments. :)

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Thanks Poodle, will see doctor again.

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Poor Daisy, when taking the calcium, you must also take with magnesium, may be at least 2:1. The magnesium will help with the leg cramp and muscle spams. There were a few postings written in "other thread" topic from RM, he/she did a good research of it. Now the calcium that I am taking is with magnesium, it works for me. Anyway, I just wanted to share my experience with these poor victims here. Poodle is always been very helpful.

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I always take the proper amount of magnesium and boron, etc. Thank you. I have all the meds etc worked out. My blood work is perfect except for the calcium being low this last time when they did the 24 hr U/A. But I determined that was because I have been eating lots of kale and spinach. Both contain oxalates which prevent your body from processing calcium. Figures, right? Those are the veggies that contain calcium but they also take it from you. You can't win. The tumor continues to grow over both eyes. Very painful. I am pretty sure it is due to Prolia. It is the only thing that ties it all together.

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Hi Friends - just playing on the net tonite and I found a whole list of attorneys that are looking for Prolia sand Xgeva victims. Many of them were for just the thigh bone breakage but others were more broad. Do a search yourself and maybe give someone a call. It's free. I would if I still felt the way I did on Prolia.

Be well all~Pood

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Prolia is a nightmare. I reported it to the NIH.

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