Prolia Side Effects Ongoing (Page 3) (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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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~

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Yes, I remember. I posted it on another page of this site that was something to the effect of lawyers and settlements and the man I know in NC has the last name of Lamb. It's like reporting to the FDA. There's a little form you fill out and email to them and they will contact you. It seems they are looking for people with major problems from Prolia like ONJ, the broken femur, numerous hospital visits, etc. Remember that Prolia is basically a newbie and that Merck has $1 billion set aside for payments to people that suffered from their drugs. Our time will come. It's just a matter of time. Stay well~

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The itching started to abate after about 5 mos.
My friend is having problems with shortness of breath & had to go to the ER recently. Anyone else get breathing problems?
My 6 month period is almost up & some of my side effects seem to be easing up. I had my first shot a year ago, little did I know how much misery was to follow.
NEVER AGIN!!!!

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How do I contact AMGEN to report my side effects? I have also read that others contact the FDA and i would like to do that as well.

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Jan~Amgen.com. Find the drug Prolia and click on it. They have their phone number on that site somewhere even tho they have redone the website. Be well~

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Jan - I have a strange feeling the Sjogrens will be disappearing in the future. I would bet good money it's from messed up immunoglobulins from Prolia. It's an autoimmune disease and Prolia is very good at giving us these. Others have had Sjogrens from it and I got Celiac from it and it did eventually disappear. Glad to know you are on schedule and starting to feel better. Next month will even be better still. Hugs~Pood

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I was told that after you stop the Prolia the bone density gain drops, beginning at 6 months, which is why the shot is recommended every 6 months...so it's suggested one does something else to maintain the Prolia improvement...I was told that mist Prolia patients do not get the multitude of side effects that I did...but I know there are many of us who have reacted badly to it. They did strongly suggest I not do another Prolia injection. I won't. I also understand now that the Prolia is leaving at 6 months yet can linger up to 1-2 years...
Sigh...
Who did you see at Mayo clinic?

I'm sorry

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Pood-
Thank you for all your posts and support these last months.... I will keep my fingers crossed for continued slow and steady improvement and lessening of side effect symptoms. I feel an improvement from when i was at my worst and made my Mayo appoint. compared to now...now it's time to focus on change and the future...what a difference a few weeks has made.

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Diana~Prolia affects the immune system in every person, not just some of us. They don't know their UTI came from Prolia or the cold they caught, etc., etc., etc. Just part of life. Then there are those of us where it really messes us up. It's absolutely impossible to not get the immune system as it binds to RANKL.

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Shirl~pain in the jaw means you go immediately to the Maxofacial Specialists. They are a level higher than a DDS. One person who took very, very, very good care of her teeth ended up with hollow teeth. The dentist crowned them but still has to do root canals on them. When are our Docs going to learn!!!!! Even Amgen knows this isn't what it was supposed to be and is busy creating a different one. Do hope you are doing better~Pood

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had a shot two wks, ago (1st time), I have a high calcium level, so I'm now off calcium but I now have sciatica pain in my right buttock, and I'm concerned about dental work that I need

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My best suggestions are:
1. Stay proactive and advocate for your own health care.
2. Get your GP to support you and help you manage side effects.
3. Take it one day at a time
4. Keep a list of your side effects
5. If a doctor doesn't help you manage your side effects, find another doctor.

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Daisy~ can't you find someone to give you Calcitonin? It's slow, not a race horse like Prolia, but it does work. I'm 99.99999% sure it would not activate the bone growth in your eye. I finally found someone who would Rx it for me. I know other people take it as it is always in stock at the pharmacy.

If you have not had blood clots or cancer, go back to HRT. Premarin can be a wonderful thing and ever so good for those bones.

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I had my first prolia injection in March 2016....I had been using fosomax and switched to Atelvia for the past 10 years for osteoporosis. The doctor saw bone density loss in my arms and suggested the Prolia injection which she felt would help me immensely.
Three weeks after the injection my throat was very irritated. Seriously, it felt like I swallowed razor blades. I went to my doctor who said my throat was not red or irritated, tested me for strep, which proved negative, and told me to use ibuprophen for the pain. I could hardly swallow. Two days later I woke up with a swollen face. My nose was huge and my eyes were swollen shut. I went back to my physician and he gave me an antibiotic and told me I had an infection of some sort. I am a teacher so I am not linking these symptoms to Prolia....but thinking I picked up a "bug" from one of my students.
The swelling went down somewhat but I was left with a small lump on the side of my nose which has since grown to the size of a marble.
I had a series of patchy hives on my neck, shoulders, my ears become extremely itchy red and swollen.
This is when I started to link these conditions to Prolia. I went to an dermatologist who gave me cream for my hives, to an ENT physician who said that the lump on my nose is definitely not a cyst or tumor but cartilage growth. I was given prednisone to try to reduce the lump to no avail. I believe I will have to have surgery to remove this lump of cartilage that has distorted the shape of my nose!!!
When I reported my symptoms to the maker of prolia, the nurse to whom I spoke was very receptive.
I am due for another injection in October....will I get it? ABSOLUTELY NOT!

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Yea you, to decide on no more Prolia treatment. I would have been due for my second Prolia injected protocol tomorrow- but canceled the appointment months ago... I have been so sick with one side effect and then another- it has been a horrible, painful, embarrassing and sickly past 6 months. I am 58 and feel 108! I am celebrating 6 months post Prolia shot tomorrow and am looking forward to slow improvement over the next 6 months. I celebrate my common sense to say no more Prolia. I celebrate my strength to tell doctors no more Prolia and I celebrate my friends here who have supported me the last 6
Months of my Prolia misery, thank you everyone for listening to my side effects, my frustrations and offering suggestions, support and advice. You have helped me so much on my journey to feel better again-
Saying No to Prolia and looking forward to the future and saying yes to a stronger and healthier tomorrow...

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After my Prolia shot, my body turned against me...I went to mayo Clinic after I got a diagnosis of COPD at home-all my symptoms were more than I could take and I couldn't breath- Along with all my other symptoms. Over 9 days I was seen by pumologist, rheumatologist nephrologist and a endocrinologist. Oh, and a dietician. I had all my symptoms addressed. I know it was all related to the Prolia- gerd, nausea. Reflux, I b s-D , constipation on occasion, upper respiratory infections, hair loss, incontinance, cramps, muscle spasm, bone and muscle pain, dry mouth, dry and tearing eyes, uti, loose teeth, weak eye myscles, vaginal dryness, depression. Memory fog, headache.... The list goes on and continues...when I left, I had a game plan for my Osteoperosis, digestive system, and other side effects due to Prolia. I also recurred a dx of Sjogrens which explained a lot. COPD was only severe upper respiratory infection... And I returned home with more confidence and hope... No cure. Jyst have to wait it out, but Mayo surged it all out for me. They also gave a pain management program which I will go to if my symptoms continue to linger for mire than a year- I hear you and your frustration.... Getting it all sorted out and managed by a team rather than half a dozen docs on their own was helpful for me... Hugs to you-

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Elise, that lump has been the worst of my Prolia problems. I went to Mayo in Jax but they could not let me see anyone but a ophthalmologist as their quota of Medicare patients "was full for the next two years" ?? Anyway, I have seen four specialists in various persuasions... and they all agree that the only thing my bone-matter lump over my eye socket is Prolia related due to the timing. It began after my first shot and grew after the second. I have been off Prolia for 18 months. The lump has not grown outward but seems to be spreading along the eye socket bone. Numerous scans of all sorts... nuclear, ct, etc show it to be not malignant but it is so tender. I caution everyone to keep away from Prolia. As a side note, my new rheumy talked me into Forteo. After 3 daily shots, the lump grew so tender, I felt like my head was caving in. The bones meds are pure poison. My rheumy now recommended Reclast as "You have to have something." Reclast remains in your system for a year (at the least.) No thank you. I am looking into yoga if I can do it safely. If I think about it, I will get too angry. So... I'm off for now. Good luck!

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Thanks for your suggestion. I did take Calcitonin of one year. Then the rheumy determined that it did nothing and had no value. I did not see any improvement in density. A good friend in another state was on it for almost two years and her rheumy took her off of it saying it really made no difference in her density. Does anyone have their bone density numbers they could share? I would be most happy to go into my dr and ask again. It did seem the most natural way to deal with osteo. Thank you!

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Calcitonin~mine went up and my Mother never broke another bone in her life. It does work slowly -- not a race horse like Prolia but it does work. I'm expecting to see a .5 on the good side for up coming scan. Doctors don't like it. There is no money in it for them and they truly believe it's useless. Even my now deceased Specialist in Internal Medicine thought it was worthless until I proved to him how much it helped Mom. I do not discuss the subject with any MD except the one that Rx'd it for me and I have to put it down as a drug I'm taking before surgery. I've received zero nasty comments from the orthopedic surgeons about it. They are just happy I'm doing something about osteoporosis. I'm sorry our Docs are in a world of denial and pushing us to poison. Be well all~Pood

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My biggest regret is not finding this "chat room" prior to having the Prolia injection! Thank you all for sharing and opening my eyes to all the terrible side effects affecting so many!

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