Prolia Side Effects Ongoing (Page 4)

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.

REPLY

REPORT

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

REPLY

Was this helpful? 0

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

REPLY

Was this helpful? 0

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.

REPLY

Was this helpful? 0

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.

REPLY

Was this helpful? 0

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

REPLY

Was this helpful? 0

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~

REPLY

Was this helpful? 0

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.

REPLY

Was this helpful? 0

Thanks Poodle. I will see doctor to find out.

REPLY

Was this helpful? 0

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. :)

REPLY

Was this helpful? 0

Thanks Poodle, will see doctor again.

REPLY

Was this helpful? 0

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.

REPLY

Was this helpful? 0

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.

REPLY

Was this helpful? 0

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

REPLY

Was this helpful? 0

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

REPLY

Was this helpful? 0

I took Forteo for 22 months and while it did improve my bone mass a little bit; I would not go through that again. They don't tell you that the benefit from it starts going away the minute you stop. Now 4 years later and another bone density test I'm in terrible condition and they're wanting me to take Prolia now. The biophosphates caused me a lot of heartburn and reflux. After reading your post and many others I'm not going to succumb to their pressure on this. I'm 63 and yes, I would like to get into my 80's without breaking my hips, back(I've fractured 2 vertebrae), or wrists. But I'm already on a lot of pain medication and finally sleep well. I don't want to lose that and I'm so tired of drenching hot spells and IBS I sure don't want to add more problems.

REPLY

Was this helpful? 0

I also filed a report with NIH. This is a dangerous drug and should be taken off the market.

REPLY

Was this helpful? 1

Mari: The report you sent to National Inst. of Health, what address did you send the report? Do they have an online form? Did you report to the Food and Drug Admin also.? All I can do is encourage everyone to keep reporting.

REPLY

Was this helpful? 0

My mistake, I sent it to the FDA, not NIH. Everyone should report it. I can't find a legal case, so if anyone can give me specific info I'd appreciate it.

REPLY

Was this helpful? 0

Micky~Prolia is going to be your worst nightmare come true. You will get 90-99% of the listed side effects. Again, the same old problem, once you quit it, the bone built up disappears. With Prolia that's probably okay as it builds up brittle bone that fractures very easily, not healthy bone. There are a couple of more options if they fit your health, one is Evista which produces hormones so your bones go strong the way they did when you were young and the other is Salmon-Calcitonin -- slow but sure. Just found out in an error posted by Canadian that Prolia is in your bone marrow. Must be how it makes that thigh bone fracture. Read the posts by all of us and make up your mind. Be well~

REPLY

Was this helpful? 1

Daisy~that bone overgrowth around the eyes is Sjorgens(sp?) People here have usually gone to Mayo for it. If you have a super eye surgeon where you live, let him at it. It can put too much pressure on your eyes and your retinas will fall leaving you blind if you don't get them stitched back up. It's a very, very small time frame one has when this happens. The surgery has to be the same day. Praying for your best~Pood

REPLY

Was this helpful? 0

I would like to know of any side effects others may have experienced after receiving Prolia infusions. Up to now I have ...

3159 REPLIES

Would like to know if anyone had side effects from Prolia but they went away - and how long did it take for that to happ...

318 REPLIES

I developed a red burning itchy lumpy rash after one injection of Prolia. Mainly on face neck chest arms scalp. Anyone e...

34 REPLIES

I'm a 59 year old female, diagnosed with Behcet's Disease and I use Prednisone for treatment for my weekly flare...

7 REPLIES

I am 60 yrs old and suffer from osteoarthritis, osteoporosis, and myofascial pain syndrome. After discussing with my end...

85 REPLIES

I am 81 and had my first Prolia Shot May 7, 2015 and after three weeks I have developed a red rash looking sight UNDER t...

11 REPLIES

Aprox 2 weeks after the prolia injection I started to experience nausea and weight loss. Also, loss of appetite and a ke...

27 REPLIES

I am not going to have my next shot of Prolia due 11 June. I have already had two injections and lately have suffered ho...

128 REPLIES

I am a 57 year old female who has -2.5 bone density scores on hips and -3.4 in the spine. I used Forteo for 2 years, but...

15 REPLIES

What does the pharmaceutical people of Prolia advised regarding its side effects? ## Hello, Lala! How are you? They do w...

29 REPLIES