Hi again, if there is one thing we all agree on it is that we find it extremely beneficial to hear others experiences as sometimes we can relate to others in this way.
We who have been given Prolia all know it comes with a warning of fracture of the FEMUR.
The patient information leaflet tells us to contact our doctor if we experience new or unusual pain in hip groin or thigh.
I have 4 spinal fractures, osteoarthritis in the spine narrowing of the canal and multiple bulging discs to name a few.
One of my fractures has resulted in nerves been in contact with discs.
I am in constant pain as soon as I move, sitting is uncomfortable too.
I have different types of pain that come and go.
So how like many others how would I know what pain would be a WARNING that I was heading for a fracture of the femur
I am wondering as well what could be done, if anything, to stop this happening once you were feeling new pain. NOTHING I WOULD THINK NOTHING could be done to prevent it.
I think it would be so helpfull if the people out there with these fractures could share with us their experience of warning pain if they experienced it.
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Sunseaandsand
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Sunseaandsand,
I doubt that any one thing could stop a break happening because they occur for different reasons including spontaneously without trauma, and with trauma due to a fall triggered by so many possibilities. Mine was as a result of chemoradiation. I had a neck of hip fractures. Weight-bearing was almost intolerable when trying to stand from seated. I used the rise/recline chair. Walking was painful. Oncologist advised me to take paracetamol, not to use a stick, and walk as much as I could. 5 years on, there is still weakness there, and can be dull pain at times. My mother, who inherited osteoporosis and who died aged 96, never had ill health of any sort, never broke a bone from trauma, lost several inches in height over time and at times had excruciating pain. x-ray showed 5 broken vertebrae at one point and she had more after that. It was then that she took Alendronic Acid. I persuaded her to visit the doctor. I wish that I hadn't. It may be that AA caused her hiatus hernia, HH. It didn't prevent the advance of OP. She didn't know that she had HH, nor did I, until she was in hospital. I could not imagine how she managed to breathe when her rib cage seemed to be resting on her hips. But she had remained ambulant, walking even after several strokes until she was hospitalised after a stomach bleed from antibiotics taken for a urine infection weeks before she died. The best I, personally, can do is take pain as a warning that damage has occurred and remain as mobile as possible in spite of it. I don't know if this would be the best course for anyone else in any circumstances. I find it useful to hear about other peoples' experience. It helps me to be in contact with others whose lives are being severely impacted by OP because it is a lonely and scary experience when the people in our actual lives don't have this limitation, but find themselves impacted by our having it. This site can help to make us feel normal and whole again, and not "other".
Are you thinking that you will take another shot of Prolia, or have you already done so? Best wishes with whatever you decide(d). Do keep us informed.
Hi, Reading through your reply has brought to mind certain memories of my own Mother and thoughts I have had and had to deal with too.
I have got through this by telling myself my Mother passed away whilst having the ones who loved her by her side, she knew she was not alone, but above all she died knowing she was loved and had been taken care of.
It is quite obvious that was how it was between yourself and your mother, you had her best interests at heart , I have had a Hiatus Hernia since being relatively young I doubt very much that the AA would have caused it.
You are right pain is a warning that something is wrong with our bodies.
My personal opinion is not to ignore it.
If it is acute pain then do not push it, I did that very thing a month after my 2nd fracture and ended up with a 3rd one.
Despite being in total agony I pushed on and looking back see it was not the right thing to do.
We must give our bodies time to heal. It is difficult when you are used to being active.
Now I don't have a choice I can not push myself because the last fracture has put paid to that.
I have decided no more Prolia, the side effects are adding to a poor quality of life and I have to eliminate them.
Still don't know where to next, at the moment it's under discussion.
Sunseandsand - thank you for your reply. You mentioned in an earlier reply or post that Evenity had been turned down for licensing in Europe in June. Did you read why that is so? A pharmacist printed out some drug particulars in response to my question about a different drug I take for a different condition. The website was for professionals, but I was able to read a section under "recent updates" which gave details of an unresolved concern with rosozumab. The site was MedicinesComplete, the area was Martindale: The Complete Drug Reference. I don't know if this is of interest to you. Personally, I don't find many answers this way, but it raises questions! Not a bad way to proceed? Best wishes
I totally agree - both with your statement that this forum is extremely useful, and also with the fact it would be helpful to know more etc. I have written before that the NHS needs to be much more pro-active and copy rest of Europe when it comes to informing and treating us, especially as - like many - I developed osteoporosis as a side effect of cancer treatment. So I was delighted to read that Macmillan, along with other charities, had produced a report which highlighted there are 1.8 million cancer survivors in UK, 70% of whom have one or more long-term conditions as a result. Until I read the report, which used this fact to grab attention then doesn't say anything more about helping us to get better treatment! aftercancers.com/prehabilit...
Hi veriterc, first I have to say how sorry I am to hear that you are one of the many that have ended up with another illness as a result of treatment with drugs for an entirely different illness.
I sincerely hope at this time you are doing well.
It actually came to my attention years ago by a maxi oral facial surgeon that cancer patients lose bone as a result of the treatments they are given.I would not have known this had he not told me.At the time I was seeing him as a result of the side effects I was having from treatment with Bisphosponates!!!
I always ask questions at every appointment I attend, even though more often than not it is not received well. It's my body and it's my right to know what is going on with it, so many things are missed these days and I feel this is largely down to not listening to the patient.
Yes, it has taken the British medics some time to acknowledge that cancer drugs DO have side effects; some can be harsh. You read about patients refusing treatment because side effects can be worse than dealing with the cancer. I was treated at a British hospital that is supposed to be THE one - but they did not like it if something went wrong - I ended up being treated like a whistleblower. One top consultant tried to tell me that going blind in one eye was "due to your age", I had to have a 7-hour heart operation to correct what drugs did to my heart, and when I got osteoporosis their consultant told me "there's nothing you can do". People say bad things about the American health service, but ASCO, MD Anderson, Dana-Farber, Johns Hopkins etc. were incedibly helpful, and gave me free advice about what I should be doing to handle side effects. If anyone wants to use their evidence-based advice, I've mentioned their websites on aftercancers.com - and thank them enormously.
The side effects from the bone treatments just bring too many other problems for me.Yet with 4 spinal fractures already and bone density severely low I don't know which way to go.
Have you tried going on one of the American websites mentioned on aftercancers.com and see what they say about Prolia and side effects. I find their websites incredibly informative with text and even videos written by doctors, but in our language!
Hi Sun. I just noticed that you’ve been on Prolia. I hate that dirty son of a gun Amgen. I don’t know why that company cannot be stopped. They just keep destroying peoples lives. In reading this post, you have the same symptoms I have. It just takes you down and cause you to be bed ridden. I call it the devil drug. They have a statue of limitations of two years so they’re in it they never get caught. The people in the USA cannot seem to get together for a class action and we just keep getting more and more people taken down Buy this drug that has no business being on the market. I hope the FDA Suffer some sort of responsible consequences. They’ve been warned and warned and warned. This drug has destroyed my life. I was working out three times a week at a gym before I started the Prolia Shots. I’ve only had two but it doesn’t matter. One is enough. When I had mine there was no black box warning. They’ve been warned and warned and warned. This drug has destroyed my life. The MDs all know about this Drug! Trust me they all know how you’re going to end up. They’ve heard it over and over and over. But money is more important to doctors. I Will never ever trust an md again. It’s all about the money in the perks
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