Prolia Side Effects Ongoing

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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Hello, Shirl! How are you? I'm so sorry about what you're going through.

Everything you've listed are typical side effects that people can experience with Prolia, as reported by both patients and the FDA. They also tend to linger for a month or two, before finally improving. It's caused a lot of people to refuse anymore treatments with it.

As wonderful as it for preventing fractures, it's hard to decide if it's worth the misery.

It can also cause bladder infections as a side effect.

Are you feeling any better, yet?

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No the side effects are still lingering. Sometimes I think the pain in my jaw is also from the Prolia. I only had one infusion and I will not be taking another! I had side effects from Forteo but I do believe the side effects of Prolia have been many times worse!!

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I took it 3 yrs ago and still have trouble walking and sleeping. I don't know why prolia is still on the market. I will never take another Shot for my bones of any kind. Dr tried to give me the new one but I refused. It seems it has the same side effects.

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No I'm not feeling any better from the Prolia side effects. I'm two months from the infusion. I sure wish this would let up soon. It is stealing so much out of my life. I don't why the FDA allows this to be on the market. I had side effects from Forteo but these have been a lot worse.

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Amgen states that the side effects of Prolia last well into 11 months after the first injection. Make sure you are getting 600 mg calcium with Vitamin D twice per day with food. That alone should stop the leg cramps as they are due to lack of calcium as my primary doc told me. I have been taking 1200, 1,000 twice a day and my diagnostics came in just a little bit high so do I believe Dr. or diagnostic results??? I'm also eating bananas for the potassium to help stop the leg cramps when I am able to keep food down, that is. Last night had a cup of yogurt and up it came with all my meds. Now awaiting results of blood work which were supposed to be ready today. I read the half life of Prolia is 26 days which I guess means the first 26 days are the worse???? I'm asking if plasma will help fight what Prolia deletes. Also need to see dentist for X-ray as jaw is really hurting. I recently got the wonderful Prolia red blisters too. The heart problems supposedly only hit less than 10% of us. Guess we are in the unlucky 10%. I have everything except seizures and death.

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You had yours about when I had mine. It has not lessened up any. I'm on real pain meds and have all kinds of meds for sleeping. I'm under the care of a cardiologist and a psychiatrist. I have basically no use of my right arm and the pain in my back and joints is beyond belief. I take Magnesium every night to keep the leg cramps down. I'm also having my blood checked every month and also my calcium levels. I take more than I'm supposed to of Calcium and Vitamin D and now that it's summer I go in the sun for a good 15 minutes to get real Vitamin D. I was supposed to have a total hip replacement last week followed by a total knee replacement. Those will most probably be postponed for 12 months after the 6th month of Prolia is up. You need some real pain relief. Not over the counter drugs! Also call AMGEN and tell their nurses every single problem you are having with Prolia. This is the only way they can know so they can modify it or delete it.

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I had my first and last Prolia injection on April 3rd. That same evening, severe problems with Sciatica from my buttocks down the right leg began. I've had steroid injection and 3 weeks of oral prednisone for inflammation, 6 weeks of physical therapy,MRI, and now pain management injections. I'm hoping this toxic formula will soon find it's way out of my system. I would rather deal with the "what ifs" of osteoporosis while living the normal life I was than taking these mess to prevent something that might occur. Does anyone have a positive story of the Prolia effects finally going away?

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The FDA wrote that even with the known side effects of Prolia, the end result is worth all the side effects. It's a fairly new drug to them so if people don't write or call them to complain they won't do anything. I was told if they get more like me, they will put stronger warning labels on it for Drs. to read, as if they really read that stuff???? I get more help from the nurses at AMGEN, the corporation that makes it. They have toll free numbers for US and Europe. AMGEN only followed people in the clinical trials for 11 months so who knows what happens after that. Seems more like 18 months from 1st injection from what I've read here and that's just helping getting the immune system functioning well again. I just hope we all live thru this nightmare. The bad news is when one quits Prolia, the bones immediately go back to the state before Prolia which equates to all this suffering for zero results.

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I went back to the rheumatologist that gave me the Prolia injection. She took one look at me and said what's the matter? You are so very, very skinny. I told her: You did this to me with your miserable Prolia. She apologized all over the place and said I know I pushed you into this. I'm so sorry. Yada, Yada, Yada. Anyway, she took more blood work and if it comes in as screwed up as I think it will, she works with an Immunologist in another city that can Rx me drugs to help my immune system. She wanted me to start eating 1500 calories/day. That's impossible! It either comes up one end or quickly out the other. She had never seen the 'Dear Patient' letter from Amgen I took to her. I also reminded her there was no blood work pre-Prolia nor any input from my dentist. I was just hung out on the clothes line to die. I'm calling the nurses at Amgen Monday and telling them they now have my permission to contact her regarding the way she administers Prolia. I won't have the results of my blood work until next Friday which is almost a week from today. I posted someplace on this site under one of their threads of Prolia that there is now a law firm in the USA looking for people with bad reactions to Prolia. I don't believe mine are sufficient yet but other people's are SchmidtLaw in Texas or Georgia is going after Amgen and looking for more victims. It's a free consult if you want to contact them. I just Googled legal cases in the USA regarding Prolia and they showed up. She also told me that after the 6 months are up, (Oct. 22) my body goes back to 100% normal and I told her that's another big fat LIE!! When are the MDs going to tell us the truth about Prolia???

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Not feeling too much better. Still having lots of trouble sleeping. Still experiencing a lot of leg pain and cramps. Had a bad jaw infection that took a lot of antibiotics to get rid of. The bad headaches have subsided, thank God! Trying to increase my calcium and Vit D intake but seem to make me sick even though I try to take them right after I eat. My appetite has been waning, I seem to get full quickly. I can't seem to eat the three meals of the day...I'm down to one now. It has been 5 months...Boy, what a trip. Yes I had talked to the Nurses and they claimed that only 2% of those taking the infusions have had problems. After reading on here, sure seems more than that. Hope all of you get to feeling better soon and your Primary doctor will get you past all the horrible things this med(drug) have caused you!

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New results of the blood work in month 4 of Prolia -- very low IgA which means Prolia gave me an autoimmune disease. Thank you so very much Amgen. I filled out the paperwork for the FDA and they have my permission to contact Amgen.

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Now in the fifth month and feeling 100% better as Amgen said I would. I am feeling confident enough to have big surgeries done after the 6th month. I'm trusting my body without the Prolia to come right back to itself as it was before Prolia. What did I gain from 6 months of H E double toothpicks, nothing! My bones will revert right back to where they were pre-Prolia. I will never have another injection. Hopefully, someone comes out with a new drug that doesn't destroy us or almost destroy us. Pood

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I fractured my spine lifting a 20 lb computer. So one year later I had my first Prolia infusion. Two months + I developed a pea-size lump on my right eye socket bone near my nose. The lump grew slowly. Six months later I had the next Prolia shot and the lump grew to the size of a lima bean. Radiologists could not see it in the CTscans but the drs could. I went to Mayo Clinic and they could not pinpoint the source of the tumor/lump but it is bone. The Prolia increased my bone density anywhere from 6 to 24% in various places in my body. Anything that strong... has to be out of control. It can deposit bone wherever it wants to. And it did. Oh yes... and I developed an auto-immune disease. Sjogrens. Not sure if I can pinpoint it to Prolia but the boney lump...definitely.

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I got an autoimmune disease from Prolia too but it's not as horrid as yours. Mine is Celiac Disease which is a gluten intolerance (wheat/barley,rye). Hoping it goes away when the Prolia mostly goes away which will probably be 11 months from injection. Any more comments on yours?

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I HAVE HAD MULTIPLE SIDE EFFECTS AND NO ONE WANTS TO LISTEN,
ACID REFLUX, ITCHING PAINS IN JOINTS, AND STIFFNESS IN JOINTS.
I AM DISCONTINUING prolia after one year use.

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Shirl- even in my 5th month and taking calcium and Vitamin D and magnesium at bed time I still get little leg cramps around my ankles so I go in and take a Magnesium tablet and they stop almost immediately. Last nite while watching TV I had one around the hip area which was a bad one and others on the ankle of the other leg. I'm upping my calcium AGAIN. Apparently, I cannot exist with just 600mg 2 times/day. Even tho I feel well, the Prolia is still messing with my muscles which means I am not getting sufficient calcium. Be well~Pood

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Hi Poodle, what brand of calcium/vitD/magnesium you are taken.

I am taking:

Omega Alpha Liquid - MultiMin Cal-Mag Plus cal 400/mag200/vitD500 Liquid twice a day (very difficult to eat)
+ Webber Naturals - Vit D 3 tablets 2000IU (1000IU per tablets)

Salt us - Cal Mag with zinc and Vitamin D 500 ml - is this is good or I have to add a tablets of magnesium 200 mg (Lorna
I feel my fingers, hands and toes numbness. spine and neck muscle stiff sometimes, is this connected to next of mag and vitamin D3
Thank you for your help.

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I take cheap WalMart store brands and others from a grocery store where I shop. It's just called "BONES". I don't go for the expensive stuff. Chewable calcium may be a better choice for people that have difficulty of swallowing a huge tablet and one can nibble on calcium all day. I don't think stiff muscles are from lack of calcium but I'm not a MD. From what I've read and studied about Prolia is that is has to have Calcium and Vit. D to build the bones. That's why we take the supplements and they are good for us even without Prolia. Prolia will rob your muscles to get the Calcium it needs. That means severe leg cramps. I'm sure the tingling is from Prolia but probably not from lack of Calcium. I'm taking 1200mg calcium twice/day with 1000IU's of Vit. D each. The magnesium is 500mg High Potency and says Promotes Bone and Muscle Health. Zinc is very good for colds although bones also need another mineral called Strontium and if I'm not mistaken, it is somewhat dangerous. Cannot remember for sure. When I back off to what my Dr. ordered, I get bad cramps and cannot lie, sleep and have to walk them off so it's obvious to me that the Prolia needs more calcium or it's going to get it from my muscles. Hope this helps a little. This is my body and we are not all the same although we do all get most of the same side effects from this chemo drug called Prolia. Also, my hair has stopped falling out at a fast rate like before. I'm still not willing to color it and I still wash it with great care. Be well~Pood

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I have only been on Prolia for 1 yr. Have had 3 shots total and was due for 4th,
came down with abcessed tooth that had oral surgeon to get out. Then itching,
2-3 different rashes off and on and then excema really bad on legs. I have
coughed since I began Prolia, Have finally got that under correction and have
developed acid reflux which I never had and now I have a small superficial
basal cell carcinoma. Many muscle pains in joints and I am quitting Prolia as of now. I will never take another shot of that medicine.

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Thanks very muchPoodle, I will look at this very carefully to pick up something that really suit for me.

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Re: Dawn (# 199)

Sending you hugs! At least I'm not the only one with this issue.
I might have sleep apnea, too. Not sure if that is Prolia related.

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Re: Nikki (# 192)

Thank you for this information. I must have missed it in my read. I too have asthma related COPD since Prolia. As I noted many times my asthma was controlled until I took my one and only injection of Prolia. I also still get the angioedema symptoms 3 years after that injection. My face gets red and ears especially my right side and at times I swear I have lupus but tests were negative up to now.

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Re: Dawn (# 197)

Hi Dawn,
Prolia does alter the immune system. I know that many people think they have Celiac when the proper testing hasn't been done or they have something that's inaccurate. I wanted people to know there is a difference between having Celiac and being gluten intolerant even though treatment wise it's the same.
Thank you for all the wonderful information you share. I appreciate it.

Nikki

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Re: Nikki (# 194)

You are correct it is an autoimmune disease but I can tell you from all the research I have done on Prolia which is almost 2 years worth of reading clinical papers etc it can alter you immune system. So if you have the Celiac gene and Prolia wakes the sleeping giant then it could be involved I a person at 70 all of a sudden getting Celiac. This Prolia is deadly for those that do not have cancer in the first place which is what it is really for.

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Re: Kazz (# 195)

I have lots of English, Scottish, and Irish blood. I thought for sure I had Celiac. It wasn't until I had the biopsy and the genetic test did I know for certain. Gluten free products are getting better, I just wish they weren't so expensive.

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Re: Nikki (# 192)

Understand what your saying and I must have had the gene for celiac but something has to trigger it....thee has been a large amount of ppl developing autoimmune diseases after having prolia. No one that we know of has in my family has celiac. I'm now 70 and of course I must have had the gene but its really odd that I get no symtoms what so ever but have had a blood test that shows I'm celiac....

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Re: Dawn (# 187)

Just a note to let people know you cannot get Celiac unless you have the gene markers for it. You cannot get it from a drug. Celiac is an auto-immune disease. It isn't a wheat allergy and it isn't the same as gluten sensitivity (but it's treated with the same gluten-free diet like Celiac.)
I happen to have gluten sensitivity and my body reacts to gluten like someone with Celiac, which is one of the reasons why a person needs to get the genetic test so they can be sure what they have.

I hope this information is helpful!

Nikki

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If you're in America go to the FDA website or TGA in Australia.

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Re: Poodle (# 9)

Update on the Schmidt Law firm: they are only taking cases of the bones that break while you are walking/stand up. No other side effects are being considered. I now have asthma-related COPD and they don't think a breathing disease you can die from is sufficient. Hopefully, they will take on other cases. This is 2020 when I checked with them.

Nikki

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Re: Shirl (# 2)

The pain in your jaw is definitely a side effect. I have had that as well as other similar aches in L and R thigh bones, UTIs and headaches. Unfortunately I allowed myself to be bullied into about 7 shots by 3 different medicos but never again. The last one was well over 2 years ago with no respite since.

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