Prolia

[Mbaloo]

I am 64 years old. I have been off calcium for about 5 years due to chronic kidney stones. My dexa scores have declined more and I am now at -3.7 in spine and -3.3 in hips. Doctors are telling me to start injections which I assume are prolia. I am to meet with a specialist soon to discuss next steps. Has anyone had good results with prolia?

[Nannie-C]

Had two doses prolia, seemed ok with first but awful with second. Had to insist on relay drug (actonel) but sadly had to stop after 18 weeks again due to side effects. Now at least another year of worry if I’ll be one that’s gets rebound spinal fractures from stopping it. My advice is to read up on all osteoporosis and it’s drugs as all have potential side effects but some can have life changing ones (like prolia) .

Dr also needs to check your bloods for secondary causes of osteoporosis as some will need to be treated before any drugs.

Look also at natural routes like improved diet, vitd3, magnesium, vitk2 mk4&7 supplements and your calcium from diet. Increasing various types of exercise are increasingly encouraged. So lots to look at before starting drugs. Good luck.

[DebDenise]

Hi I am now 65 and my tscore is the same as yours in my spine. I had a bad side effect due to taking Prolia for osteoporosis. I had my second injection June 1st 2018 and a few months after noticed my right thigh was hurting. I went to my nurse practitioner in September & asked her if it could be a side effect due to Prolia. She felt it was not a side effect and stated I must have hit it which I didn’t recall doing, she told me if it was still hurting in a month then to come back. I was still experiencing discomfort but I knew my appointment with the osteoporosis clinic was coming up November 14th, 2018 so thought I would speak to them about it. In the mean time I did extensive research on Prolia through a web site called my Osteoteam. I was alarmed to find out the number of women who experienced a femur break, pelvic fractures and spinal compression fractures due to Prolia and even Actonel which I was on for several years as well previous to Prolia. I noticed some commented after their second injection they experienced a fracture.

I went to my osteoporosis clinic appointment determined to get off this drug. The osteoporosis team were very concerned however still encouraging about this drug stating that what I read was true about rebound fractures but it only happens to 1% however I truly feel is probably higher.

After being sent for at least 4 xrays I unfortunately was now one of the 1% to suffer from an atypical femur fracture to my right leg. My left femur is showing damage as well but no fractures. My life was just turned upside down. I was fortunate that they moved quickly with an MRI and an appointment with the orthopaedic surgeon & was scheduled for surgery November 28th, 2018. A rod was put in my leg from my hip to knee to stabilize my leg. I of course have nothing good to say about Prolia.

Last week I was called to take Forteo because my bone density showed my spine was now -3.7. I declined. I decided to continue a strict workout of low weights, walking and eating as healthy as I can.

My mom is 83 and the osteoporosis meds have never helped her. She was on fosamax which she had a bad reaction from. Her leg snapped while standing in the kitchen. She actually has a rod in each femur now. She took two Prolia injections and then declined her third after what happened to me. My mom does not really eat healthy nor exercise however she is still in her own apartment so I have hope that I will still be able to cope on my own at that age especially when I am trying everything I can to improve my bone health.

Do your research on natural ways to help your bones. I wish you the best to better bone health. 😊

[Arcadia10 in reply to DebDenise]

I'm so sorry that you've experienced an atypical femoral fracture and now have to live with a rod in your leg (and likewise your poor mother with rods in both legs). You must be really angry to have had your life turned upside down through no fault of your own. Like you, I have nothing good to say about Prolia after having had side effects on and off for 18 months, most severely after my 4th (last) injection. I have been on Actonel for the past year as a relay drug to get off Prolia safely. I am really annoyed to find myself in this situation as I am having side effects from the Actonel but, of course, am grateful that nothing has broken yet.

At present, I too am having pain in my mid right thigh which came on about 4 months ago out of the blue. My GP sent me for an x-ray and CT scan and I'm due to have an ultrasound later this week. Nothing has shown up so far. I'm concerned about this pain being the prodrome for an atypical femoral fracture, so wondered if you could tell me whether your x-rays showed anything sinister and why you had an MRI? My symptoms are a tingling sensation along the mid outer thigh and at the same time a feeling of pain if I even touch the area very lightly. When doing the CT scan, the radiologist couldn't even press the marking tape to my leg without my wincing in pain! I walk about 35kms per week and am still able to do that without any real pain. It's more when I lie on my right leg at night or press into it, so pressure, that makes it hurt.

The incidence of rebound vertebral fractures is actually 10-15%, from what I've read, not 1% but conversely, on the positive side, 85% of people who don't follow with a relay bisphosphonate should be OK. I just wasn't prepared to take the risk, so now have to put up with the side effects from Actonel for a couple of years. As it's now 2 years on from when this happened to you and you stopped Prolia, you appear to have been one of the lucky ones to have not experienced rebound vertebral fractures.

[Mbaloo]

Thank you for the replies. I do not want to take this drug but I may have to. I decided today to try working with Dr. Susan Brown of Better Bones.com. I purchased her Bone Builder basic supplement today and will start taking them as soon as possible. I am going to attend her live webinar on 2/16/21 and ask her further questions. I am stongly considering paying for her 1 on 1 consultation and program. I just feel that I need to get another opinion from someone who embraces a natural response to osteoporosis. If I take prolia now it will probably stop my bone loss but I am afraid it will kill any future chances of me ever growing any bone back. I went to the KU Spine Center here in Kansas yesterday to check on a vetebral fracture I suffered back in Sept 2020 when I fell over from a stooped position pulling weeds. I pulled on a weed that was not attached to the ground and forcibly fell backwards into a reverse somersault. I am sure it was that injury that caused the T7 fracture. The doctor said it is healed and wants me to go on Prolia. He was very positive on Prolia. He said he has many patients that have done great on the medication. He has operated on many patients and said it made their bones strong. He said whenever anyone needs spinal surgery they put them on prolia for 3 months so they can operate. It is so hard to know who to believe!

[rockinr_56 in reply to Mbaloo]

It's all about big Pharma! The doctors are being paid 2 prescribe you that medicine in hopes that you will take it so they will get their huge kick back! He is so full of it.

[HeronNS]

You can read this for some ideas although my t-score was never actually in OP range. I suggest even people who take the meds should also do all the natural stuff.

healthunlocked.com/pmrgcauk...

[rockinr_56]

OMG please don't take that injection not even once. My husband was taking calcium and the doctor talked him into taking a once every 6 months injection of Prolia. Thought it would be more convenient for my husband right? Wrong!! My husband went from 45% kidney usage to 4% within 6 months was an immediate dialysis three times a week had a massive all system failure. It was awful I'll be more than happy to discuss any of this with you it ruined my husband's life to be honest.

He's 70 years old. He also caught a very rare and deadly disease 2 months after starting dialysis, which is called Calciphylaxis! It's the worst and many people do not survive! Not saying that you'll catch it I think you should really give that injection a second thought at least a second and third.

Good luck! I would beg anybody not to take it !

God bless you

[rockinr_56]

Also my husband had a fracture in his femur close to the knee. So it just totally annihilate everything that it stands for by the side effects. Bad drug in my book

[Hidden]

I had my first shot of Prolia last year November, I had asked all my Dr because I was very reluctant because of the side effects. I got convinced that it was the best course for me. Never ever again. The side effects are brutal, I have all of them , the pain is overwhelming. But what really got to me, after talking to all my Dr and asked them individually , nobody , nobody told me that it is almost unlikely and extremely difficult to ever stop Prolia. Because the increase in spinal fractures. I am so angry, that there are no warning about that at all. I personally will stop and not continue, the side effects are brutal. To me not worth it , there must be a better way.