Thought it best to get this off my chest and share asap. I am aware we are all different, I've had Lupus SLE long enough to know that one so the following is not to shock, just to share with you.
Last November I was diagnosed with multiple vertebral fractures. My last Prolia injection was in January 2019. This was the fourth injection. Low back and jaw pain caused me to stop. I like you have read enough to know I should have been placed on another drug to protect me from these possible fractures. Sadly as usual my hospital was too busy telling me I was suffering from anxiety. If anxiety is to blame for severe lumbar pain then ok. I have no words! You know the rest.
I asked to be transferred to the nearer hospital that diagnosed the fractures and which already keeps an eye on my APS.
My first appointment went well in early January, the second was awful - wrote mid week telling you about that and a rather arrogant chap who seriously needed some help with his attitude as he mocked my recent horrors, restless legs no sleep for three weeks, stomach dumping and anal bleeding. So much for feeling on the mend. I'd saved his brain by being honest about my three weeks of fun. This man was a Consultant Rheumatologist. Allegedly.
This morning I received my recent dexa scan results from 6th January 2020. In 2016 my lumbar spine was -4. Whoops I thought, not good. Calcium supplements taken daily for 14yrs, ideal body weight, always walking and not lazy, eat good diet etc etc. It was a hard slap and hard to believe.
Todays letter has left me doing an impression of a goldfish. Lumbar spine -5.7.
Seeing GP next Tuesday and requesting urgent referral to a specialist orthopaedic unit. Might as well cut out the osteoporosis bit. I'm not laughing this time. I only have an ill health pension so not huge, sadly became ill before made it to a full service pension, but have had the brain to be saving and cautious with spending. Time I put that cash to a good cause.
Don't feel sorry for me. My partner as I have mentioned previously is my senior by some years and has survived years of cancer treatment, surgeries and now looks after me has taken the news badly. He butted in during that appointment this week when the doctor was rude and will stand by me. This isn't fair on him either.
Take care and have a good weekend,x
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catno1
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Thank you for sharing this terrible story. Are you able to make a complaint to some authority or other who will make sure this becomes part of the record of Prolia adverse side effects?
I wish so much I could help you. You and your partner are both very brave, and you deserve support. Perhaps when the urgent medical appointments have been dealt with you or a family member or friend can call a relevant government official or even your representative. These people are public servants and are there to serve you.
Thanks for writing so soon! Was just telling my partner I'd been brave and posted my note online.
Yes, I will seek legal action/advice etc. Not something I need to be doing but enough is enough. I cannot be the only patient who has been damaged. It's a double twist because hospitals can say it wasn't the care that did this but why did they not monitor me! I had huge concerns after the fourth injection caused a flare in severe pain in shoulders, spine and hips just days after. I told my hospital and even asked for a scan to see if that Prolia was actually helping. Their answer was that I had to wait 5 to 9 years before they would do another dexa scan!
My partner would vouch for this and that I have often said this at home that I had a gut feeling that the medication was not doing me any good. Apart from the strange flare which like now felt like fibromyalgia having fun in me my only other problems had been three UTIs which were diagnosed by dmards tests and had not been noticed by me. Back, jaw pain and usual arthritis and yet blood tests showing all ok.
The recent dexa scan was requested by the renal ward doctors that were confused by my perfect blood tests until of course the mri shocked them back in November.
Departmental doctors/consultants have tunnel vision and a severe hearing deficiency at the best of times!
Both of these hospitals have bad press for years. Constantly seeing how their mistakes and poor care have caused life changing problems.
I sound like I'm ranting like that horrid doctor, sorry. Frustration is big.
This is a safe place to sound off, and your story is going to help others. ❤
few weeks ago I put a post up on how dangerous I hear Prolia is I work in a health facility with lots of osteoporosis cases with women who have gotten really sick from this drug I put what I had heard down and surprisingly a few women seemed to object to me telling women to watch out for these drugs so I still will repeat stick to natural ways to heal bones you can do it - diet and exercise vitamins help too but the drugs just say NO loose teeth loose you entire jaw and be disfigured for life you cn have so many bad things happen with the drugs for bone its shocking
I have since after reading your reply had a look at your post. I welcome your knowledge and thoughts. I understand both sides but sadly now know what the drugs do. Those of us with prior cronic conditions know how the diseases and strong drugs during bad times have left us with further problems to live with. I was started on alendronic acid three weeks ago. Last week, Wednesday, I should have taken the fourth. I didn't. Last night I had four hours continuous sleep until woken by fibro bouncing legs. That's the longest I have slept in four weeks! It can't be a coincidence that I have a sign of getting better after dropping the alendronic last Wednesday.
Just spoken to my partner about your post and he agrees, the drugs warning has been large enough with Prolia. Those three weeks were my last. I am concerned about further rebound fractures so will go on with caution. And try my very best to get appetite back, increase dairy and friut etc as you and others have advised.
The -5.7 is the machine advice which is scary but after the evil pain from fractures and lack of care I must screw my head on.
Thank you very much for sharing your knowledge of others suffering. Those that have suffered the jaw problem, their posts on here always show sadness and it has made me see how low in spirits they have become. I don't want to have to write myself of further problems in the future.
Please regardless of negativity you relaying your knowledge is welcome. I do understand you have to be careful but I respect your wish to do so.
if I were you I would try to wean myself off the drug Prolia Not sure if you can abruptly stop or if - as they say must taper off nd then stop but all these bone drugs are deadly and why women do not get together and do a class action suit is beyond me . the drugs not only cause deadly side effects but do NOT even really strengthen bone
they make bone to appear larger but the bone created by this drug is like fine crystal - if you just put pressure on it or tap it the bone can break ! but its never too o late to change and go natural to re do the damage the drug has done (in additon to you having osteoporosis)
so sorry that you were NOT given the correct or true info on the drugs . Good luck
It's too late with the Prolia sadly. My last jab was last January. The low back and jaw pain became unbearable. Three months after the July dose would have been due two ribs suffered compression fractures. Less than three weeks later I was found to have multiple spinal (vertebral) fractures, a slipped disc and nerve damage. My doctors were approached for support in September but were useless.
Recently I started Alendronic acid and after over three weeks of no sleep and huge tummy troubles I only made it to the third week of that.
I have been left on Prednisolone for fourteen years although for most of it the lowest dose of 5mg. I live with quite a few diseases, SLE, APS, Fibromyalgia etc etc and also need warfarin. Warfarin is like steroids a drug that makes bones less strong.
I know one thing I have had enough of osteoporosis medication. Time to learn from others and without harming any more of me try and get back to normal. What ever that is?!
To clarify what you've written: If a person has more than one Prolia injection they have to go on another bone med if they stop taking it. You don't have to wean off any of the bone meds, but in the case of Prolia (denosumab) you have to take another med if you stop because of the risk of "rebound osteoporosis" which is unrelated to the original condition and can be, as Catno1 has found to her sorrow, worse than what Prolia was prescribed for in the first place. Incidentally, I've read also that although there isn't the same "rebound" after finishing teriparatide (Forteo or Forsteo) another drug is recommended in order to maintain the new bone density.
I don't think there is the same problem with the bisphosphonates, although they come with their own suite of unwanted effects, because they stay in the bones indefinitely.
Hi Heron Ive spoken to many many women and health professionals and they alllll say that these drugs are basically the same . One older man I know of was put on one of the bone meds and he simply got up off his chair to walk across the room his long bone in his leg cracked in two hes now living the rest of his life in a wheelchair . Very sad now his problem is horrible m yes osteoporosis is tough but being in a wheelchair for the rest of ones life is worse. Not worth the risk to take the drugs which are all bad
Oh I didn't say there were no problems with the bisphosphonates - just not the rebound problem. What happens with them is that new bone is laid over an aging matrix which eventually becomes brittle, hence the spontaneous fractures like the one you describe. I would NEVER take any of these medications, but I do think we should be taught a lot more about our bones early in our lives, the same way as we are alerted to the risks of smoking, or the benefits of exercise, or the importance of a good diet. We should all be taught how to develop and maintain strong bones.
wouldnt it be nice if they let people know this before they pitch these drugs onto unsuspecting older people who do not know wht they are in for . this is criminal they should be told that the bone that the drugs create is like fine china very delicate so what is the difference btw having osteoporosis and then being put on a drug that compounds your problem? I would rather stick with osteoporosis than the possibility of loosing half of my Head
Actually I think fine china, or porcelain is very strong, so maybe not the best analogy (that's why it can be made so very thin). I'd say the brittle bones are more like over-dried wood!
ok so now your splitting hairs . if it were you believe me you would be really angry so plz save it these people now have serious deadly problems in addition to bone loss
Lighten up please. I didn't mean to offend. But I must say that likening one's bones to fine china was not a frightening thought, which is the only reason I mentioned it. Fine china or porcelain is beautiful and strong. Medication-damaged bones are not. I am indeed very sorry about what is being done to so many patients and that is why I keep in touch on these forums because I feel my experience could be helpful to those who want to avoid the medications the doctors are pushing on them. If you and the others would rather I went away, just tell me. I will go. You can likely ask the administrator to block me. It would save me a lot of time not being involved.
So sorry that you've had to go through all that. It's shocking how little so many of our medical professionals know about Prolia, in particular the risks of rebound fractures when stopping it. If you're in the UK, did you know you can report side effects under the Yellow Card system (yellowcard.mhra.gov.uk/)? You might also find it helpful to get in touch with PALS: nhs.uk/common-health-questi....
I spoke recently to a friend on Prolia she had really bad side effects she did not even know tht it ws from Prolia she ws loosing her previously very strong perfect teeth after she took the drug she ws sick to her stomach had pains etc she ws telling me things she was having so I told her that if she was on Prolia tht these are typical side effects - she was shocked and looked it up online got back to me she ws very angry as she was not informed of side effects
We are only told little. I complained of stomach problems and was sent to a gastro doctor who blamed everything but the prolia. Thankfully the jaw pain I had may have been from grinding when in pain elsewhere or fibromyalgia so I am grateful for that at least.
It is very important that people report these symptoms. What happens is you complain about something and you are told, well we haven't had any other complains of that nature. I find that happens with products. But later you find out this is just the company line and they have had complaints. Maybe that particular representative hasn't received that complaint before, or whatever, they try to shrug it off. But if the complaints keep coming in and at some point the relevant government agency gets involved, or a whistleblower alerts the media, then at least there is a portfolio of similar complaints on record, not just hundreds of people who thought it wasn't worth making the complaint because they weren't going to be helped. Reporting these Prolia problems may not help you but it WILL help many people down the road.
Thank you for your reply. Yes I am in the UK sadly surrounded by useless hospitals.
I hear you re the yellow card reporting and yes things like this cannot be ignored. Why did they allow Prolia in the first place! Time has showed us that the risks are much greater than they initially warned. After the fractures there is no going back. Whilst on the ward that I was diagnosed on one of the doctors said to me "you are a lttle young for this" he was being considerate but it is hard to forget his words.
Over on the American Bone Health forum people keep trying to figure out how to get a class action suit started against Amgen re Prolia. So far no firm has taken up the challenge as far as I know, but if eventually someone sees that there are indeed many people adversely affected by the drug then it will happen.
I just wish the doctors weren't living in their little silos. I noted my doctor, who is a lovely person, didn't have a clue about what the "real world" was like when I mentioned "the winter from hell" - which any other citizen of our fair community would know exactly what winter you were referring to, no question - she didn't know what I was talking about, she just remarked that she had someone come and keep her driveway clear, which must be why she hadn't noticed. Likewise, the doctors don't have time to read the popular press or listen to the radio, or check into forums like this, so most of them never hear the stories, and may only have a couple of patients on a certain med, neither of which seems to have problems which register on the doctor's radar. The lack of physician concern about the medications they prescribe is a huge obstacle. Are doctors greedy, as I think we can legitimately claim the manufacturers are, or are they simply too trusting because that's easier than doing reading of unbiased sources?
I've an appointment booked with my GP Tuesday but not sure if it's worth it. Here our Consultants bully them as well as patients. Our whole medical service will explode soon as it's overloaded with poor staff, drug advice and far too many people using it. When I first wrote after the fractures last year I had lots of replies but could not help by annoyed with those that had simple aches and pains yet obviously taking up medical time that some of us many years younger need. It's so typical here for people to reach a certain age and then cry wolf.
The ones with more money than sense complain when their private hospital discharges them. It's like they all want to be ill and get the attention that brings.
What I hear about the NHS makes me very glad, despite our own difficulties with physician and specialist shortages, that we never went with the double system in the UK. Here no doctor is allowed to practice privately. Well, there are certain procedures that aren't covered by public medicare but you can't, for example, arrange to see someone "privately". I think this is a bit of a safeguard against the kind of crumbling which appears to be occurring in the UK. One major problem in both our countries is of course the short memories of human beings, politicians, doctors and patients all, who forget what it was like in the old days before excellent public health systems and taxpayer-paid healthcare available to all.
Thoroughly agree. I said the same earlier to my partner. They seek attention and please I am a very caring person but I've had people moan about their problems and not been sure how I have not been rude. Our accident and emergency at our local hospital is full of people with minor complaints. A visit to a pharmacy would be enough to help them. It appears normal even on this site to read accounts of how people have sort private medical and got sneaked higher in queues for many types of medical care.
People like me only visit those hospitals when absolutely necessary. Believe me the only only thing good about them in my area is leaving them. Exit, car, drive, home quick. Hate the places. The biggest reason is the lack of care and this private practice that is now the norm.
I was considering private care myself, I wrote that this week. But why when all they want is my £. It's time I took control of my care and yet it is daunting. Just had an early bath before eating our evening meal. After the last three weeks of restless legs and dreadful pain from stomach I have zero energy and it hurt like hell lifting my pathetic 58kilo body out. Scary. People like you and your support have kept me going. My thanks is real.
And I have listened. Next to my is, and I have read about effect on INR and informed my blood unit, some vitamin D3 & K2 MK7. 75mg is a good start. My huge calcium supplements are ridiculous. I eat and drink enough so it's time to gently ease myself out of the poison they have fed me. Alendronic acid has given me a huge warning. I'm not strong enough for that. Rest, gentle exercise and keep facing forward.
Slowly back out of drugs that aren't necessary now. Painkillers, warfarin and maintenance dose Plaquenil is my long term aim. If I fracture further then I'll have no choice but to deal with it. Prolia made that lumber spine drop from -4 to -5.7 with added fractures, nerve damage on top. It will be hard but the pain last November produced was like a nightmare and has changed my life. Accept and gently move on.
I am truly shocked (but not surprised) by your recent experience. I know you must be feeling pretty awful but complaining about your treatment (or lack of it) is the thing to do. You have been through so much physically and then to have to put up with the arrogance and ignorance of so-called medical 'professionals' is not acceptable. My husband's recent experience at Hereford County Hospital was so appalling he has written to every head of department involved and the chairman. We need to remind these people they are not outside the law.
I hope you have some relief from your symptoms soon.
Regardless of my problems I am sorry to hear others stories. Stay strong.
It isn't just the medication aimed at us it is, as you know, the lack of care. These alleged professionals play on our concerns, make them worse and refuse to hear our thoughts.
I as a post earlier this week immediately concidered my three weeks of problems to be the changes in dose of my long term drugs. The years have left lots of history of bad times. Now, and to be honest, the dexa scan results which arrived yesterday have I truly believe made me see that I may have too keen in hoping the Alendronic acid as my saviour for further fractures. Maybe it's time to go with my experience as a warning to myself.
You and others over the last months have written a welcome reply to my problems. These have led to me reading many others experiences of drugs. So few other those have a happy safe ending. I really have had, excuse please this bad pun, had a gut full of doctors aggressive attitude towards patients whose want sound and safe advice.
I will be making complaints. Why give them the pleasure of their damage going unnoticed. They get away with murder because of the weakness the damage caused which is a disgrace.
Proceed with caution as you have been doing. The doctors scare us with test results and list of drugs they say we need.
Thankfully we have sites like these to read of others experiences. Recently it has become very obvious whilst resting and reading that others experiences after just one shot or tablet of these osteoporosis drugs have been. On long term medication for previous problems it is too easy, it happened to me, to ignore the new symptoms and soldier on regardless.
I had 2years self injecting for osteoporosis bone related problem. Now over, I do not feel any different than when I was first prescribed them. Not sure if prolia is the same thing. Sorry to be so vague, I am 86 and take each day as it comes.
It sound like you are keeping safe which is good. Prolia is one of the newer treatments with one injection every 6 months. Sadly like others prescribed it has huge risks. My experience and what others have written gives some proof to how evil these drugs can be. I am only 52yrs old. Younger people than me have suffered as well.
Those of us old enough to have, shall I call it, old fashioned respect for the medical profession still look up to our doctors and think of their vows of do no harm. Too many of our doctors are making up their wages with money they make by pushing these drugs into their patients prescriptions in this modern world.
Stay safe, enjoy good food and health. Hopefully our summer will be warm and make for a easier time to keep us fit.x
That would have been forsteo of forteo depending whether you are in the UK or US. Are you taking any other OP medication now as you have finished the 2 years of self injecting?
Hi so sorry to read your story. With -5.7 lubar dexa would be demanding to be put on Forteo Injections which are given by yourself nightly for maximum of 2 years. It's synthetic PTH para tyhroid hormone . Usually given to older patients but I was put on t after L1 and L2 back lumbar fractures.In Ireland it is covered by chemists once we pay 129 Euro monthly on drugs but unsure n UK.
Hi, nice to hear from you. It's amazing how so many of us have had such bad experiences. It sounds like you started around my age and brave to take the drugs for so long.
One of my problems is the drugs I have been left on. Prednisolone and warfarin. I'm starting to gradually lower the dose of the first in the hope that my body will cope without it but sadly I need warfarin for life. Warfarin is very damaging for bones.
Sounds stupid maybe but after fourteen years of a four page prescription for two chronic diseases I live with that are now quiet I'm considering the natural way. I have had good sound advice on here and my diet only needs small changes. It may sound wrong but I am too scared of more drug damage. All of them come with risks. Early days and time will tell. Caution physically and take each day as it comes. With five fractures some in thoracic and lumber my body feels very different and as well as pain since fracture the frustration of not being as pliable is taking its toll.
I have noted your treatment and are pleased you sound like you are doing well. We both know it's not easy behind closed doors but sharing experience and care advice takes that knife edge off.
My partner has suffered severe problems with cancer immunology drugs that are used instead of chemotherapy. This was all done at one of the top London Hospitals for cancer and yet he was left needing more surgery and now lives with type 1 diabetes induced by the drugs they used. Three rounds of sepsis during that and he still raided two supermarkets and came home with large bags filled to the brim today for us. The cancer appears to have gone - his Father came from Limerick and he has inherited his Irish humour thankfully to keep us on our toes. We have both had enough of drugs now.
Just forgot to say my Dexa were -2.5 and I took bisphosamates for ten years and was then put on Prolia six monthly injections for 3 years. Then I got an abcess on a tooth in my lower jaw and dentist refused to take out tooth due to risk of necrosis...death of jaw bone having been on Prolia injections. I followedhis adivse and did not get Prolia renewed that January.But 10 weeks later I developed severe back pain and after MRI showed up fractures in L1 and L2 lumbar spne.My consultant told metha the minute to stop using Prolia your body starts to eat up calcium in all your bones...called reasorbsion. I never fractured a bone in my entire 65 years until I sstopped Prolia.
Then I finally was put on Forteo and on it now for last 15 months injectingmyself nightly. So far so good and I am on it for a max of 2 years. They will most likely put me back on Fosamax or another bisphosamate...but I would refuse Prolia which is a very dangerous injection and NO GP OR CONSULTANT TOLD ME BEFORE I STARTED IT NEVER TO STOP TAKING IT OR I WOULD HAVE FRACTURES. It was Never Printed on the Prolia warning injection. I also blame Dentists for Not telling me what would happen if I stopped taking it and he never sought advice from my bone consultant or told me to consultthe bone consultant. I had to be off Prolia for 6 months beforfe he extracted the lower 5 jaw tooth.
You've been so vigilant with sticking to your osteoporosis treatment those fractures must have been a real slap in the face to you. It may have happened to me but it makes me angry to see how many of us have damage from Prolia. They do warn of Osteochronosis of the jaw and femur fracture risks just as the bisophosphate drugs do but this sudden stripping of all the alleged strengthening we are told it does for us is shocking. Many, I have already sought advice, are trying to get law suits together for this shocking damage.
Have a search online, many medical associations have started publishing reports regarding Prolia and the spontaneous vertebral fractures that appear very common when the drug is stopped. Our doctors need to start protecting us as well and pull their fingers out!
I had dreadful pain in my jaw whilst on Prolia. It ceased eight months after stopping it. X-rays by my dentist has thankfully shown no jaw disease but a couple of teeth that were healthy before Prolia will need extraction. With my dentists help I intend to wait as long as possible before this is done. People have written on the site about suffering from the jaw disease due to Prolia. How unfair for them.
Keep going and well. Thanks again for writing!
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what's the point of osteoporosis drugs 
full body brace for osteo/more fractures
denosumab injections
