Prolia Denosumab and vetebral fractures - Bone Health

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Prolia Denosumab and vetebral fractures

catno1
catno1

Hi and a Happy Christmas to all.

Found myself in a rather horrible situation last month. Not sure what is worse at the moment the part leading to hospital admission and diagnosis five days after or the three attempts it took me to get anyone to listen prior to this. Ridiculous when you consider I could hardly walk, any movement, cough or deep breath especially when vertical causing both legs to violently move upwards my knees heading towards my chin causing extreme pain.

The biggest confusion was my primary disease is Lupus. All the medical staff could see was someone who must be having a bad renal flare. I now wonder just how many of us are overlooked or ignored because they cannot see beyond this to the list of other conditions that we find ourselves living with as the years move on. Sorry to all that I sound a little pathetic or even a little melancholy but it's happened to me before. On that occasion I was left to my own devices with acute pancreatitis diagnosed by mri during menopause. Believe me please because like all of the problems big and small we live with it's often made even worse by lack of care or understanding. Doctors, people in general often say they understand a disease but living with it is very different. Take care out there everyone and keep going. I mean it sincerely.

Less of that. Now to Prolia. Four doses and I found myself ten days after the fourth injection with spinal pain, pain across upper back and buttock area which lasted two weeks. Jaw pain had already started and became more severe in right side upper jaw. A nurse had panicked already when I needed a filling when I attended for the fourth shot and refused to inject me. This was completed the following month. By the time the fifth shot was due I had huge concerns as my dentist told me three previously healthy teeth needed extraction and was very concerned re the jaw pain. I was at that point concerned with what I had read already re prolia. A consultant's appointment was pulled forward to talk about my concerns. As expected he wasn't available when attended. My GP was unsure about making changes to my care without his advice and so two months later I found myself diagnosed with two compression fractures in my ribs and a month later five vetebral compression fractures in my spine with bilateral nerve damage. The jaw pain has ceased. Fingers crossed at mo on that subject.

It's good to listen to our doctors. Mine was brilliant at the start of my care many years ago. Sadly like many of us my recent horror has left me feeling like a specimen and not someone who rarely asks for support but when they do it would or could have made a huge difference.

I now never want anyone to mention the word prolia in the same room. The doctors who finally diagnosed me apologised for their confusion and looked after me very well. Their faces and that of an orthopaedic surgeon who I have seen since showed confusion. No falls, no trip-ups, no huge cough or sneeze as well as no past fractures. Simply rebound fractures from a drug that is promoted to many including those like me with low risk of fracture but a dexa scan result that led to it being pushed on me.

Please do not take offence at the following. My partner has had cancer for four years. But we wouldn't take a cancer drug before we were sure and full diagnosed risk factors completed would we? He's still under treatment and now is kindly helping me through this. He didn't need to making use of his little energy by helping me wash and dress as well as take over all the household chores. It's not just our diagnosis we live with it's the time, energy and frustrations surrounding.

Keep going you lot. And take care.

37 Replies
oldestnewest

I’m so sorry to hear this happened to you. They wanted to start me on Prolia with a phone call. I am putting it all off for a while. Thank you for posting. Your information can help all of us. Carol

catno1
catno1
in reply to Goldencbc

Hi and many thanks for your reply. It's with huge regret now that I consider how easily I said yes to Prolia. As I hope came across from my post was it isn't just the damage it's the whole picture surrounding it. I'm 52 and my partner is nearly twenty years my senior. The role reversal has been hard to watch. He had a two hour thirty minute cancer scan yesterday. When he attended an appointment which should have been before the scan he was told it had been changed to five hours later. He still came home and cooked my dinner. How I don't know! Some posts on here make my fractures minimal. People speaking of how their lives have changed have tugged at my heart. Use 'Prolia rebound fractures' as a search term and see how many posts there are. It's scary.

Whatever your future decisions. Keep safe and best wishes to you.

veriterc
veriterc
in reply to catno1

Was horrified to read your story. Do you live in UK?

catno1
catno1
in reply to veriterc

Hi there! Hope your day is going well.

Yes, I do live in the UK.

Next week hoping to make it my first rheumo appointment at the hospital I was looked after recently. My worry at the moment is they will insist I continue on Prolia. Whilst in hospital a specialist came to see me from my usual hospital. I was given a choice. Prolia, prolia or prolia. Not joking with you either. When I said no was told the other drugs used would cause worse damage. Even mentioned cancer. So not looking forward to seeking new help and support and finding myself with a doctor that isn't going to listen. My current medication is standard. Hydroxychloroquine, methotrexate, warfarin etc. Postmenopausal by six years and basically been in fairly good health considering Lupus is my primary disease. Stiffness and worrying about my INR have been my only problems and the odd tummy upset!

I've taken daily prescription calcium tablets for fourteen years. A dexa scan in 2016 showed lumber spine as -4. Please bear in mind even after having children I luckily remained the same size and weight since I was eighteen. Worked for the Police for sixteen years and so not exactly unfit or shy of a walk.

My partner's heath has been a weight on my mind as well as body at times but even so describe myself as someone who medically has always done as told. Don't drink, smoke and have a healthy diet, drink more water than coffee/tea etc. And now consider that some posts I've read on this and other sites have a point. Maybe some of us have always had smaller bones. Maybe that dexa scan is not quite right. I've never even fractured a toe before this.

I'll stop rambling. Sorry. Sure you understand the frustration. So you have a good day. Keep going. Don't be pushed into anything without making up your own mind. Please.

Appreciate your reply. Kind Regards,x

HeronNS
HeronNS
in reply to catno1

I believe there are actually different standards in different countries - a slight person from the subcontinent will, naturally, have lighter bones than a strapping Scandinavian, for example.

You may be interested in following the development of this, United States, but a beginning:

aboutlawsuits.com/prolia/

Truthfully I don't know why it's taking so long. In Canada they aren't really allowed to advertise meds like Prolia, but there is some sort of loophole, so I've seen an ad for Prolia which only shows a young girl growing up, going through life stages, and at the end, as she is depicted as a vigorous elder, it's implied taking Prolia will keep you young. I've submitted a formal complaint about this, as there is nothing in the ad to tell you it's for bone density, unless in the unreadable fine print which flashes by unnoticed! At least in the US all the side effects have to be read out as part of the ad. And as far as I know such advertising is entirely forbidden in the EU. Athough it doesn't seem to have stopped doctors from being taken in by the blandishments of big pharma.

I have no idea at this stage what can help you physically, but do try the various natural things many of us now use. They won't harm you and may have some positive influence on your recovery. Also, if it wasn't done before you were put on Prolia, you should be tested for what they call "secondary causes of osteoporosis.

americanbonehealth.org/bone...

My story is here.

healthunlocked.com/pmrgcauk...

catno1
catno1
in reply to HeronNS

Hi again and a very big thank you. I have seen your previous posts when searching but more than appreciate you giving me the links here!

The advert you describe sounds awful. All I can see is people being mislead into taking these awful drugs. Before I was diagnosed with Lupus I can honestly say to you I never considered even over the counter drugs basically because I never needed them. I can't achieve full remission with Lupus due to APS and warfarin which is bad enough. If I'm brutally honest I have had enough of this Osteoporosis scare we've had aimed at us and even would prefer not to beg for bisophosphates after as I've read the fracture risk could continue up to two years after the final shot left me. It all seems to point to carrying on with these drugs that don't necessarily decrease the risk. The reason they use, not helped by the dexa scan result, is that prednisolone has caused it. I very quickly, within eighteen months of diagnosis achieved control of both diseases. My dose was changed from 12.5mg to 5mg.

I very much appreciate what you suggest re checking for secondary causes. You have a point.

As I have mentioned in another reply calcium/vitD supplements have been taken from diagnosis. My blood is aways perfect and a good diet, walking and not simply driving everywhere are all normal for me.

Going to enjoy a hot drink and have a good read of what you have sent. Many thanks again as although tired and sore this is getting me through this bad time and I want to know as well as understand as much as possible.

Have a good evening,xx

Goldencbc
Goldencbc
in reply to catno1

I hope you are able to recover and feel better. There are lots of suggestions on this site to help us get stronger.

AzKK2019
AzKK2019
in reply to Goldencbc

Run!!!!! Don't take Prolia. Like many I too have now 7 compression fractures in my spine. Fractures that had to heal broken because surgery was not an option. So, no stay away from that drug.

This is a lot to deal with. I hope you have no more problems.i had issues after only 1 prolia injection. Specialist said prolia didn’t cause it , but GP said don’t get second shot unless we know for sure. All we really can go on is our own experiences!

catno1
catno1
in reply to 735eastgate

Hi and many thanks for your reply.

I've read many sites and no one appears to want to blame prolia. But do listen to your own doubts. Don't torture yourself with too much study on this but after now having serious problems myself have been having a good look online. There are so many reports now re people like me who have had spontaneous fracture it's scary. A bmj report studied 8 women with 35 spontaneous fractures. Another 9 women who presented with 50 vertebral fractures. The pages online go on and on. French Prescrire want it banned. My partner's oncologist told him this very week that prolia is going to be withdrawn but wouldn't go further.

I hope I've helped. Furious that allowed myself to be given the drug and very worried indeed that like others will fracture further before it stops withdrawing all it's what I see as false bone from my body. Every click, snap and strange feeling is, I admit, making me paranoid. The lack of sleep hasn't helped those worries.

Keep going your end but please keep safe.x

What a terrible experience. I do hope that at this late stage the doctors are able to help you recover a good quality of life. Please, eat well and nurture yourself as much as you can. It is good that your partner is able to help you despite his own illness.

Your experience needs to be reported somehow. We read how denosumab can lead to a condition worse than a patient had before, but it is shocking to understand exactly what those glib words mean. If your medical team is as supportive as they now appear to be perhaps they can help you make a complaint about this medication, although perhaps not until you are starting to feel a bit better?

Gentle hugs.

catno1
catno1
in reply to HeronNS

Hi and many thanks for your repy.

It's two months now and slowly seeing a change. Pain is more controlled. Partly due to acceptance and slowly getting strength back. Most of the frustration at home is trying simple chores in the kitchen and inability to keep personal hygiene like before. Washing hair, bathing etc has been impossible. Partner has helped me wash down at the basin. I can't even move both hands to wash them as back won't allow. All the things we ladies do like shaving legs/underarms has had to be left. Probably sounds pathetic. Forgive me but I'm keen to describe the realities of situations like mine.

Thanks again. Please if you have time do read my replies to others who have kindly written.

I am seeking advice re this horror but also worried if it will not help my future care. Bit of a catch 22 situation.

Have a good Christmas, keep well and please take care.x

My heart goes out to you both... Thankyou for sharing your experiences with us. I really hope the new year brings better news for you.. Sincere best wishes

catno1
catno1
in reply to Glengarry57

And the same to you for taking the time to say hello.

Best Wishes to you,xx

Thank you for sharing your story. I hope you recover fully and find real alternatives to counter the Prolia effects. Here in Canada I was pushed by my GP to have the shot after a BMD scan (was 63 at the time). After finding this site and the brave ladies who took the time to write down their experiences, I declined the 2nd shot. My GP was extremely angry and now will not send me for a follow-up BMD test. I truly believe that the Prolia manufacturer is giving him incentives to force this on to patients. Now I'm taking calcium, D3, K and small amounts of strontrium and stopped most of my exercising for fear of getting a fracture. Every time I get a twinge of pain in my back I get very worried because my Mom got compression fractures and ended up on a walker for life (but she was 88 and discontinued her Fosamax after a few months because they made her bones ache). With euthanasia and assisted suicide legal in Canada, I don't know what to do as there's no motivation from anyone to provide preventive care to seniors.

catno1
catno1
in reply to WorryProlia

Hello and thanks for your reply. I'm pleased you learnt more about Prolia before further injections. I, like you, believe we are in the main pushed into these drug. I'm not happy to hear your GP has been unhelpful. Is it possible for you to change to another GP? It's disgraceful the disrespect many must have suffered over this issue and similar but who is he to be angry. So many of our doctors in the UK also have private practices and this is reflected in our NHS. The whole issue appears to about money. Doctor are supposed to do no harm and not line their own pockets.

I'm sorry to hear about your mother and like my country the lack of care to seniors here is appalling. But am worried that you are scared of exercise. I promise as I sit here now typing away I'm very sore and stiff and looking forward to some sleep tonight and even putting off visiting the bathroom to avoid getting up that even in this mess I am concerned how scared you are. Walking is something I miss. Exercise is good and our bones need it to maintain strength as well as keep our circulation good. I take warfarin daily and also fear due to current problems I may suffer a clot. Please reconsider or at least read up on the good reasons to keep trying and maybe lessen your fear. I promise you I'm not being patronising or misunderstanding of your fear especially given my current problems. Is there a friend, a family member who would listen to your worries? Have at least a little giggle at me here - I have always been one of those people who park as far away from the supermarket as possible to make myself walk further even in bad weather when I've been busy at home for days.

I've written a reply earlier to another kind member who wrote that when I'm in bed especially any strange feeling, joint crack or ache has been making me paranoid of more fractures. It doesn't take much to cause these worries. They are normal in you, me and everyone.

You mention assisted suicide. Sometimes life has been extremely unkind to people and it is easy to have some understanding of why they want to say goodbye. In the UK it isn't legal. Suicide touched my life and left a memory that has made me feel guilty and now I'm older concerned that I may have been selfish and ignorant to his troubles. I was twenty-six when my own father took his own life. Nineteen months prior I had seen his face glowing with happiness as he met his first grandson. I was also my father's only child. A photo has played on my mind for years. It shows Dad with my son and obviously shows a huge weight loss which wasn't obvious to me at the time. Both his solicitors and friends all denied to me that Dad was ill. I'd give the world to put the clock back and know what the years since have taught me.

Keep in touch if you can. Sometimes even a problem written and shared takes some weight off our minds.

Keep warm and again thanks for sharing your story and worries.

Kind Regards,xx

HeronNS
HeronNS
in reply to WorryProlia

I'm sorry, the one thing you must NOT do is stop exercising. It's stressing the bones through safe exercise which keeps them strong and can even make them stronger. If you have insurance coverage please see a physiotherapist as soon as possible. Ask around and find someone who has some experience treating people with osteoporosis, not a person who is more interested in treating sports injuries! You may be able to get some advice from your local hospital. Ours runs a workshop about twice a year to give people lots of information on managing osteoporosis and I found the section on exercise the most helpful. You are given pointers on how to move to prevent injury, such as ways to reach to the floor without actually bending forward. Some of this information is on line but it's always best to learn from someone in person because then you can ask questions and they can let you know if you are doing it right.

The safest weighbearing exercise is walking, and if you are strong enough carrying a little extra weight, preferably with a weighted walking vest where you can very gradually increase weight over time will help even more.

As for the doctor's treatment of you after you refused any more Prolia I think you should complain to whatever organisation regulates physicians in your province. If you suspect he's being bribed to push the drugs then that needs to become public knowledge somehow, so without accusing a specific individual of anything the media could become involved. Something for the CBC, which lately seems to be very interested in uncovering problems with health care? I have recently seen tv ads for Prolia which make it sound like a wonder drug for keeping a person young, and never mention treating bones - I think they are not allowed to make health claims on Canadian media, but this is even worse than in the US where at least they have to say out loud a list of all the possible side effects of prescription meds that are being advertised.

Thank you for sharing your situation. You have a lot to deal with and you are doing so with steadfastness, grace and kindness. I am unclear from what you have said whether you were still following the Prolia injection protocol when you started having fractures or had you stopped. If you had stopped how many shots did you have before you stopped and how long after your last injection did you start having fractures?

I had four injections and my last one was September 2018. So I am in countdown for the rebound period. I have read that you can start counting the two years from your last shot and I've also read that you can start counting the two years from when your next shot would have been due--I don't know how to find out which is which. In my case the 5th injection would have been due March 2019. At any rate I have had no fractures so far but I know I am not home free. Also, even though I have not had an injection since Sep. 2018 I continue do have several side effects physically that I am certain are from the Prolia. Some of those sides effects have continue to worsen even though I have stopped taking the Prolia injections.

After the 2nd injection I started having left shoulder pain and muscle pain that came and went throughout my body and my PC doctor said those were not side effects from Prolia. So trusting this long time physician of mine I continued on with the injections. By the 4th injection when I told him about the pains and said that they were worse and now also affecting my right shoulder he agreed that those could be side effects from Prolia. - LOL, not - The muscle pains feel like when you have had a really heavy workout that has made you very sore. In the last 6 months or so those pains have worsened and affect my left shoulder a lot, my right shoulder some and both of my legs increasingly as of this writing. None of what has been happening was there before I started on Prolia.

I had five previously trusted physicians recommend me to that I start Prolia and at the last I finally did so because two of my most trusted ones assured me it was the best thing to do--my first injection was in Dec. 2016.

As an aside I was one of the first patients back in the mid to late 90's that got hooked into the Dexa Scan, Bone Drug (Fosamax), Hormone therapy, 10 year protocol. Fortunately, I only did Fosamax for about three years--back then I only had Osteopenia. Then in 2013, at age 73 years old, when a Dexa Scan showed Osteoporosis I was referred to an Endocrinologist, who did a through exam and was the first of my doctors to recommend that I start on Prolia.

Thank you in advance for your answer. Wishing you all the best, xxx

foxysharon
foxysharon
in reply to Me_oww

Having bisphosphonates before prolia,may prevent rebound fractures.

HeronNS
HeronNS
in reply to foxysharon

That is a very interesting statement. Can you find a reference for that as it could help a lot of people - prevention before the Prolia rather than after?

foxysharon
foxysharon
in reply to HeronNS

just google it,there are a few papers that allude to this.MAY prevent,not will prevent.I think if you dig around,people who do avoid rebound,always seem to have been on bisphosphonates first.

Me_oww
Me_oww
in reply to foxysharon

Thank you for taking time to write and for passing that information along. If you can recall where that information came from and provide a reference it would be helpful. It is a helpful thought at the least. Best wishes!

foxysharon
foxysharon
in reply to Me_oww

google it,there are a few papers on this.

Me_oww
Me_oww
in reply to foxysharon

Thank you!

HeronNS
HeronNS
in reply to foxysharon
Me_oww
Me_oww
in reply to HeronNS

Thank you for the link, it was very helpful. I had not previously run across this information. It is helpful to know. Thank you by the way for all that you share. Best to you!

catno1
catno1
in reply to Me_oww

Hi there & thanks for your note. Had two sleepless nights so a bit slow today so sorry it's taken a while to write back.

Like you I had four injections. The first three injections were six months apart but the fourth was delayed by a month by a nurse who panicked due to me needing a filling replaced. A wasted journey led to me phoning rheumatology the next day to ask what now. They were unhappy because nothing intrusive was happening. It was a small filling that was replaced without any drilling or anesthetic and replaced withing 48hrs. The fourth injection was finally administered the following month

It was ten days after the fourth shot that side effects were huge. I had already started having jaw pain and eating was affecting this. My diet is good so it didn't cause many problems but the pain was harsh. I woke ten days after with my neck locked to one side, and found as I finally managed to stand that severe pain was present across my shoulders, down my spine and from one side of my buttock area to the other. This compromised my life for two weeks. It left me with upper back pain and was noticed by friends that I was constantly leaning on furniture or when shopping onto counter tops.

I described it to my GP when I had recovered from those two harsh weeks as similar to fibromyalgia pain. The pain would increase to such a severe point that I had to change position or lean on things constantly. I did ask her thoughts and after having a look at her med books that yes it could be prolia. She had read that skeletal pain could be a symptom.

I already live with fibromyalgia but had never suffered the pain in these areas before. Mine normally rears it's ugly head in my knees, neck, shoulders and hips. I also live with arthritis and have had symptoms since I was sixteen. Osteoarthritis is also a problem in my feet. Probably not helped by my job once. And also pain can become harsh during even the less violent flares from Lupus and APS that menopause has led to. So to be honest it's hard for somebody wth Lupus to be sure if they side-effects from a drug because the symptoms of Lupus are very similar.

Lupus is extremely violent and even though I've now had it over fourteen years and are aware of signs of problems, how to deal with them etc are easier I am constantly aching. Poor sleep is something I have to ignore. With what I was told on diagnosis that I had an appropriate 5% immune system capable of working properly the rest busy trying to cause problems in me like upsetting major organs. So how could I even worry about immune damage from a drug!

The recent fractures have been a shock. I've taken strong calcium/vitD supplements since diagnosis and diet and exercise have always been good. My last injection should have been in July. I fractured initially in early October, rear ribs, and suffered multiple vertebral fractures at the start of November.

I've read some horrible articles and studies. Mostly the opinion sways to the fracture risk period is from six months after the last injection. And that the risk continues for up to two years. Taking bisphosphates as soon as stopping prolia they also say can decrease your risk of fracture. But, let's be honest the picture is a complete mess at the moment. What we need, people like yourself who are concerned and those already damaged by fractures like myself need answers. I just hope this happens.

My partner wasn't monitored when having immunotherapy for metatastic melanoma. He now also lives with diabetes type 1 due to this lack of care. The primary diseases some of live with are enough without added horrors to live with. He has had good health throughout his life. But this has been hard to watch.

Keep safe your end. It isn't easy. I'm pretty strong minded but this is something I did not need. I do hope support and understanding is coming soon to help support those that have been compromised by injuries that have changed their lives and those with genuine concern. I said in an earlier reply my partner's oncologist mentioned prolia was being withdrawn but would not or possibly could not say more. He had asked how I was and my partner had explained my problems. I hope this is true and was glad to hear the consultant told my partner to contact him if he needed. Support is everything.

Again thanks,x

Me_oww
Me_oww
in reply to catno1

Thank you so much for taking time to clarify. I did not previously know that the two years counted from the last Prolia injection, that is definitely encouraging to me since my last one was as I said September 2018. Even though my body is dealing with issues still that I am certain are related to Prolia it will of course be huge if I can get through this without new fractures. I've already had two fractures in my life with resulting issues. I try to stay positive that the Prolia rebound will not cause more. With all that you are dealing with I can't imagine how much worse it has been for you with the fracturing. You are an amazing person. You and your partner are an inspiration for others. I wish you well and hope for the best outcome for both of you. Best of luck in the coming New Year of 2020, hope it is a most healing one with many, many more to follow in improved health. Take care, x

catno1
catno1
in reply to Me_oww

And the very Best Wishes for you. You are doing well. I'd sincerely want it to stay that way for you and others.

Some of my replies and initial report may seem harsh and rather blunt but it is too easy to forget that our troubles are also increased by the issues surrounding us. Daily life as well as relationships as well as the side-effects new problems bring. I finally have had some sleep yet it's only 3.54am in the UK and just crept out of the bedroom to grab some pain killers. It already appears from his side table out here my partner has already done the same as his mug is close by. What would I have done if the cancer that was diagnosed in him four years ago as well as diabetes and three scary sepsis scares he has had had finished his life! Not sure how he made it through the 2nd let alone is planning a shopping trip tomorrow with half a leg missing, a full neck resection plus other operations, as well as radiotherapy damage already in just four years!

I use the fact that there is always a worse story than our own to kick myself into reality when down.

Hoping to get some more sleep so I'll stop reflecting and hope that 2020 is a better year.

Stay strong & let's hope the we all keep strong and gain some strength where we can.

Kind Regards to you,x

I am so very sorry to read your story and can empathise just a little with what you are going through. Although my situation isn't comparable as I had no other underlying health issues, just osteoporosis diagnosed 1999. When Protelos (strontium ranelate)was suddenly withdrawn in 2014, the doctors recommended Denosumab (Prolia) so I had 6 injections over 3 years without any side effects. The final injection was September 2017 and DEXA results were (apparently) good so the hospital ill-advisedly decided to put me on a drug holiday. I went on to suffer 8 spontaneous rebound vertebral fractures August-November 2018. Underwent 2 vertebroplasty/kyphoplasty procedures to repair the worst of the fractures, and since then it's been a daily battle against back pain, and adjusting to deal with kyphosis (hump in back) changed body shape, loss of height, and general inability to do things I previously enjoyed like dancing. My poor husband has been a saint. For nearly a year he dealt singlehandedly with cooking, shopping, laundry & general household chores. I'm now able to do some light tasks but it's still difficult as I can't lift cooking pots and vacuuming is impossible. I qualified for Teriparatide (Forteo) injections on the NHS and have had that medication since May. I try to exercise daily, do (modified) Pilates for core strength & balance and take calcium, K2, D3 and boron supplements. I wish you well and may things only improve for you both in the New Year.

catno1
catno1
in reply to 8fractures

Thanks for your reply.

Eight. That sounds awful. I have five plus a slipped disc that has indented the thecal sac as well as bilateral nerve roots. Ouch doesn't even come close. Frightened to cough, pass wind, get up too fast etc etc. So please with full respect yours sounds awful. I'm so pleased your husband has supported you but can see from your note this has been hard work for both of you.

The confusion that has caused drug holidays is unfair and it's hard to believe prolia was released with so little information to the medical profession and us.

Yes, I did have medical problems enough already as you very kindly mentioned but this is different. The unnecessary damage has changed our lives. My vertebral alignment is maintained. I am lucky. But I feel for you with your changes even though I could have more damage to come.

Taking away joys, you mentioned dancing, is unfair. Please keep your toes tapping to your favourite music. Don't let it take that away.

Keep going, take care and stay strong.x

Hello Catno1

I've been reading your messages ....... I'm a 'Prolia follower'

Sorry to read about the tough time your having.

I had 8 rebound spinal fractures three months after stopping Prolia, no one knew what the problem was etc. etc. (You know the sort of story!)

I found I needed to get pain management sorted, the Butec patches 10 micrograms/hour was the only thing that gave me some control over pain (took 5 months before I got there) and able to sleep more than two hour at night. I understand that your medical concerns are complex, but life does look so much better when the pain is more controlled! Once pain was more under control I could start doing a bit of weight bearing and walking (with crutches) etc.

I hope your hospital appointment helped.

Best Wishes

Posy White

catno1
catno1
in reply to Posy-White

Thanks for writing. Eight isn't good. Sorry to hear that. As you know the pain is hell. So glad you found something useful.

I genuinely found pain relief from taking full dose of my usual Co-dydramol 20/500. Sounds strange but Oromorph, Oxynorm etc had no effect on me. Gabapentin helped slightly with nerve pain. Thankfully that's starting to relax. Sadly sitting in my armchair after giving up trying to sleep after an hour of twitching in bed!

Had first appointment at my nearest hospital today. Felt safer than I have for years. Hoping it will stay that way, fingers crossed.

If you have a mo tell me more about changes you noticed after the fractures and how you've managed over the months. I would genuinely be interested. I'm not doing bad but the frustration at not being able to do every day things is very hard. It's early days I know but even attending an appointment today has brought back huge stiffness that I was getting over.

Again thanks,x

I am looking through past posts on Prolia and found yours. Could you let me know how many injections you had? I have had one, and only recently discovered there were any problems with Prolia...none of the medics mentioned any problems..I was just given the injection.

I am now wondering whether to stop...I am borderline osteoporotic but taking high steroid doses. I am now going to talk to my doc...but it would be interesting to know if you got rebound fractures after a single dose.

I understand that if someone has 'just had' Prolia and no other previous osteoposis medication the risk of rebound fractures is slightly higher.

I also understand that just one injection again puts you in the lower risk bracket.

I had 5 years of treatment start in June 2012 ending June 2017 (10 injections)- so I'm of no real help to you.

If you are concerned best to take action 'now' the sooner the better to give yourself as much time as possible to make the right choice for you.

Good Luck

Posy White

Hi there!

I had four injections. When you say osteoporatic tell me what you mean, have you had a dexa scan or have doctors used your age. Forgive my blunt questions. I'm 52 big the way. Not sure if they have diagnosed you with osteopenia this end, dexa result of 0 to -2.5. I was -4 when I started Prolia and a dexa scan recently said my lumbar spine is now -5.7. After stopping Prolia is works by violently stripping away any good it has done. In my case it has taken off more.

It's alleged that one injection does not cause the rebound fractures if you don't have the second injection.

I have lived with two autoimmune diseases, Lupus and APS, for fourteen years and so eat well, kept myself fit and apart from those that knew me I would look as fit as trim as I did twenty years ago before this. I was on maintenance dose prednisolone for both diseases when the fractures occurred. Post menopausal by six years with a partner twenty years my senior who has survived cancer surgeries, treatments and three rounds of sepsis. This, the fractures, has been a life changer. To someone like me who has always previously followed medical advice this has caused even the way I see my other care. I use the term 'care' loosely. GPs and Consultants alike make money from these drugs that damage, ruin in fact our lives. Just when partner and I thought we were getting stronger it has been a very bad time.

Please if the above has any bearing on you or you would like more answers write to me on the one to one message system on the site. My fractures started in ribs mid October last year and on the 31st my five fractures plus slipped disc and resulting nerve damage hit me like a ton of bricks. I would NOT want anyone to suffer this hell. I'm ex-plod, Met, and will be the first to try and keep people's chins up but after reading how much Prolia is changing lives like my own I want people like yourself to know the truth.

Thanks for writing. Either by answering more of your questions or directing you to evidence of it's damaging effect I will help if you need.

You take care. xx

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