Prolia treatment for osteoporosis: What is your experience?

I took oral osteoporosis medication and had groin and leg pain, along with periodic stomach pain. When the bone pain/cramps became so severe it was waking me up nights, I stopped taking it. I started taking medication again a few years later at the urging of my doctor, but pain returned. I have now been off all osteoporosis drugs for a number of years. No bone pain and feel 100% better not taking anything! I have no intentions of taking prescription meds again until there is something that doesn't cause these side-effects and shows that it gives long-term benefits for osteoporosis. Good luck and hope you will feel better soon.

I am making the decision today. Prolia or Reclast. I am concerned about the listed side effects. Please tell me your experiences with either. Thank you.

I’ve had a bad experience with Prolia. Severe joint pain, mouth ulcers, psoriasis. My Oncologist told me that this type of reaction is rare. I would make sure you are doing full research before having any injection. Also, Prolia is very expensive - good to know this depending on your insurance situation.

Good luck with your decision. I am struggling with that too. I’ve talked to several friends who are in Prolia and have had no problems at all. After doing research and having three docs and my PT advise me to go on the medication, I have decided to go ahead. My risk for a fracture is high. I will have the injection in a couple of weeks. I will say, I’m still apprehensive about it. I wish you the best.

Has anyone had experience of stopping Prolia and what happened after they did?

I am on Reclast ( one infusion) and have had no side effects that I can definitely say are from the Reclast. I will probably have to get on Prolia at some point in my life but am holding off until I feel it's unavoidable.

Please think and research these drugs. A very recent study of 7,800 women in Europe revealed these drugs “may” and “can” be very harmful to spine and thigh bones causing pain and fractures. I had two injections accompanied with every side effect possible. Then was told not the miracle drug it was hoped to be! The biggest ‘scary’ reality is what happens after the injections are no longer given? Can bones build up so quickly that they may fracture 18 months after your last injection? Look up London’s Medical recent research results. Read about CHO, Amgen and the lawsuites in the USA! Shocking! Ask if your medical team knows if there is anantidote? Listen very, very carefully to Prolia advertising warnings! Horrible but true!!!

Amen! Smart woman!!!

What drugs are you talking about?

@13ah_rkr : Here is an experience from a friend of mine. READ IT before you make any decisions:

It all started while visiting my Wife’s Doctor in January 2017, when she informed her the test she had 5 years back for bone density showed slight Osteoporosis. We were never told the results of that test, and assumed everything was OK. The Dr. immediately prescribed Fosamax, and within a week the reactions kicked in. Her Ankles swelled up like balloons, and her neck swelled up with inflammation like I’d never seen. The pain was unbearable in her knees and back. (We thought it was Osteoporosis onset, never related it to the drug.

We were then sent to a specialist and he advised us to get the Prolia shot. As it would replace the daily Fosamax and offer a more solid footing for the Osteo. Gave the usual waivers and got approval from Humana for the injection.

It was within days, of that injection (May 17 2017), my wife woke in the early hours crying in pain, could not get out of bed, so I carried her to the bathroom, then to the sofa where she withered in pain even with the two Tylenols given her. It took us a week of this before we called him and advised him of the issue. Not much sympathy, that’s when he said, ”she’ll be all right in 30 days” (WTF) was my response. She needs pain meds or something!

Her GP saw the situation, provided a prescription of Percocet and sent us on our way.

Kathy deteriorated from that day on to this day. She could not walk without a Cane, she lost her sense of smell, taste, appetite and regularity. Her skin dried up like alligator skin, her lips went numb. She lost #45 within those few months, down to less than #100. I flew our two boys to Denver as I thought she would not last till Christmas.

We saw a different Dr. in July 2017 and got an MRI and x-rays he said she had no cartilage damage to her knees, and had no idea why her ankles were so swollen. He believed it was something “systemic.”

One day in July 2017 she woke up with all the systems of a heart attack. I rushed to the ER just two blocks away we spent the day being tested. Negative heart attack, but the Dr. was very puzzled as all the systems even the vital signs were pointing to it, but the blood tests proved negative. “Very puzzling” he said

It wasn’t until 6 months after the injection, while watching TV, she got up, walked across the room to get a snack, when I almost fell thru my chair. “did you just see what you did”. “Shhhhh, don’t even say anything, but I feel NO pain at all” was her reply. “It could come back”. Well, it did with a vengeance the next morning. Now that’s when my analytics kicked in. This can’t be Osteo, this has to be the drug.

Then the vomiting of a thick fluid started in about 7 months into this, so thick she had to reach into her mouth and pull it out, along with disorientation, depression, and loss of equilibrium at times.

Nine months after the injection, she started not to use the Cane as much, but would rather just push the grocery cart as a replacement. Things after a year have improved since the first one and only shot.

This is now October 2018, and here is the latest update.

1. She no longer requires the Cane, but she does ask for my arm walking from and to the car.

2. Still in pain 24/7 and is on Percocet but now the pain specialist want to switch to Nucynta as it works better with the Biologics. (Fighting Humana for the switch)

3. She has gained 12# and muscle mass is returning to her left leg.

4. She still has days that will put her on the sofa for hours, but she is coming back albeit slowly as to her sense of taste and smell.