I've been on Actonel 35mg weekly for the past 18 months as a relay drug to discontinue Prolia without fracturing. Two weeks ago I woke up coughing violently at the end of a week in bed with bronchitis, and suddenly experienced a severe stabbing pain in my left rear pelvic bone (one of the two little bumps that you can feel on either side of your tailbone). An MRI showed a fractured sacral ala which is very uncommon. Only just over 5% of people experience this, usually athletes or the elderly. I'm wondering whether it has anything to do with the 3.5 years I've been on osteoporosis drugs. This article implies that there is a connection which is under-recognised by medical professionals: lanisimpson.com/blogs/news/...
Has anyone on this site had this type of fracture? I'm also wondering whether it's a rebound fracture after stopping Prolia. There is a lot of publicity given to multiple vertebral fractures, but maybe there are other types of fractures that fly under the radar.
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Arcadia10
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Yes, I’ve finally been diagnosed with a sacral insufficiency fracture. It took a long time, a huge amount of pain, a change of GP surgery - ‘no I couldn’t have an x-Ray (I only wanted a regular X-ray ) because there was a backlog and there were waiting lists’ , a change of physiotherapist - ‘my problem was probably referred pain from my lumbar area, roll down to let me see your back! ‘
Finally I tipped over backwards in the garden as I was trying to get up off the ground and I landed on my bottom, the pain was indescribable- I could barely stand let alone walk, I felt like someone had put my pelvic bones in a Tesco carrier bag and was giving them a good shake.
At that point I gave up on the former GP when I let the phone ring for thirty rings with no answer and went to A&E where the hospital GO I saw recognises my pain and thought sacroiliitis and prescribed Naproxen and physiotherapy- still no X-ray but at least I felt he was on the right track - that was back in June and I’ve not come to the top of the list yet.
I finally found an amazing private physio who sent me for a private MRI lumbar scan. Following on to that one I had another two MRIs one of the pelvis and one of the sacrum.
Sure enough I was unfortunately proved correct when I had told my former GP and physio that it felt as if someone had hit me over the sacrum with an iron bar and I felt as if I had a crack right down my sacrum.
There doesn’t seem to be much you can do about an SIF other than keep moving. I walk for at least half an hour every day - mainly on flat surfaces and I do three hour long Pilates sessions a week plus my good physio said to do exercises on the days I don’t have a class so I do a shorter routine morning and night on the days I don’t go to class.
I took AA for four months last year but it really didn’t agree with me and I had so many side effects I stopped taking it. I’m sure there is probably no connection but I have recently started to wonder if there might be but I’m sure it’s something that I will never find out.
Judging by the efforts I had to go to finally be diagnosed I suspect SIFs are probably a lot more common than people think particularly in the elderly where it is likely to be put down to old age or ‘a touch of osteoarthritis’ as the doctor who wouldn’t send me for an X-ray suggested.
Hi Liz - a lot has happened since we were last in contact. I'm flat on my back in hospital for a start! How life can change in the blink of an eye...
It's interesting that you've also experienced a SIF, and after being on a bisphosphonate too, although it was only for a very short time. I have come across one other person on this site who had the same sacral ala fracture a year into using Actonel to wean off Prolia, so very similar to my situation although she had underlying health conditions affecting her bones. I really suspect that 3.5 years on osteoporosis drugs has caused this fracture. I was hale and hearty until I started taking these drugs, no fragility fractures, etc.
It sounds as if just getting your diagnosis was a nightmare. Apart from your NHS moving at what I understand is glacial speed, I think the lack of early diagnosis was because this is an uncommon fracture, and most doctors would never come across one in the course of their medical careers. Thank heavens for your private physiotherapist! My GP didn't know why I was in so much sudden pain, and gave up after the immediate x-ray and CT scan he ordered showed nothing. Two days later and still in a huge amount of pain, I went down to Emergency at one of our large teaching hospitals. They misdiagnosed it as an inflamed muscle from all the coughing, and sent me away (on crutches, as I couldn't walk!). I knew there was something very wrong and asked my endocrinologist for a referral for a private MRI as the people in Emergency wouldn't do one. I was really lucky and got a cancellation the next day, a Saturday night. Once the sacral ala fracture had been diagnosed, 10 days from the day of fracture, I felt hugely relieved. Having to wait months in pain as you did, not knowing what was wrong, would have been horrible.
It's interesting that you have been told to keep moving, walking, Pilates, etc. The endocrinologist told me to cancel the physio appointment I had made at my GP's suggestion until I knew what the problem was as any movement might make things worse. Right now I can't walk without crutches as I feel that my lower back/buttock muscles won't support me. I can't sit up in bed nor stand up unsupported. I'm sure this will improve with time but, for now, I'm flat on my back until the ala starts to heal. I might take a leaf out of your book once it does and start doing Pilates!
Are you in hospital because of the SIF or because of the bronchitis?
Like you I felt very wobbly and unsteady on my feet. I could barely walk. I use my Nordic poles all the time when I’m out - or hang on to my husband but it is definitely getting better. I used to joke with my physio that I had given up jay walking but I can now cross a road quite easily.
The physio said to hold onto things - like the dining table when I stood up, the worktops if I was doing anything in the kitchen - at that point I couldn’t even lift my water just out of the fridge - and I was to move very slowly and carefully, to go downstairs one step at a time.
My other half still does the cooking because I find standing for a long time quite tiring. In fact a few weeks ago when this was all new, we met a friend when we were out walking and I stood for about half an hour talking and that really set me back so standing isn’t great for me.
I’d be very careful about exercises, you need someone who really knows about osteoporosis and will have seen your scan reports etc and who will treat you really carefully. I know though that without exercise I would be in real pain, it was when I stopped my Pilates when my teacher had a month off that this all started up, falling on my behind as I tried to stand up in the garden just finished me off.
I'm in hospital for pain control (on Endone) and also because I live alone in a double-storey house and couldn't really do anything involving being on my feet for too long without excruciating pain. At least in hospital I can lie flat on my back and meals are brought to me, as are the meds which have had to be tweaked a couple of times. I am very unsteady on my feet without the crutches so, if I fall in the bathroom, there is a nurse on hand to help. It was downright dangerous at home alone standing in a mostly glass shower cubicle on wobbly legs! Medical professionals like an orthopaedic surgeon and physio came to see me today for review. If I were at home, I would have to get myself to their private rooms on crutches which wouldn't be easy. This wonderful service comes at a cost - private health fund premiums for several decades, but worth every penny when needed.
Thanks for the links in your PM - most interesting. Still absorbing them and will get back to you once finished.
Glad you are in hospital and being looked after. So fortunate that you have health insurance. It would have been very difficult to manage in your own. I know exactly what you mean when you say you feel unsteady on your legs, it is a very strange feeling.
I don’t do a lot of cooking at the moment, we’ll I d9t do a lot of anything really, if I were on my own I think I’d be reduced to a Tesco delivery and having rice crispies and milk for every meal.
After standing for a while I still have to hold on to the worktop to hold myself up. Suddenly things you never thought about when you lifted them have become real heavy weights - I feel as if I need an action plan before I even fill my glass with water from the jug in the fridge. Like you say on your own every little thing becomes difficult.
In the 10 days before I was admitted to hospital, I was eating instant porridge (microwaveable), canned tuna and packet soup! Most other meals required too much preparation effort i.e. standing. Hopefully by the time I go home I will be in a lot less pain and feel more confident standing, so will be able to prepare meals.
I'm slightly concerned that you are still having balance and standing issues after what must be 5 months after your fracture. That's a long time to lose one's independence. The orthopaedic surgeon I saw yesterday said that I must start walking - no physio, just walking. I can hardly stand at this stage, so walking seems a step too far (pun intended!). It all feels like unchartered territory.
I haven’t posted before but have often read everyone s problems. I am 69 diagnosed in 2008 and had 3 spinal insufficiency fractures. Since then I have gone on to have 10 spinal,1 hip and 5 pelvic/ ala. I have been on many drugs but think as I came off Prolia after 3 years in 2015, that a lot of the others are rebound as I wasn’t given anything else for 6 months. At the time Prolia wasn’t a suspect drug. I have never fallen to cause fractures and I also had to take steroids with chemo treatment for nearly 3 years for Leukaemia so they wouldn’t have helped my bones. At the moment I m getting an X-ray on the other hip as I think it may have gone. My ortho surgeon is wonderful and has filled all fractures with cement which has stopped me stooping so much. I still take quite a few painkillers and up until last week was able to walk unaided. I have just found a personal trainer who seems really good as I ve wasted my muscles when I was unwell tho I always try and walk every day.
The hip department are dreadful and won’t see me for another year.
I just try and do what I can when able but it’s hard. Luckily I have a very supportive family
I'm so sorry to hear about your issues, Pam. You really have had a rough time and must be in a lot of pain. You must be very brave to cope with all of these problems but you obviously have a philosophical outlook on life. It's good to read that your ortho surgeon has been able to successfully fill the fractures with cement (vertebroplasty?) to stabilise your spine. So that's a plus in what sounds like a horrible time for you over many years.
So you were one of the unfortunate people to suffer Prolia rebound fractures before the medical profession understood and accepted the issues around stopping Prolia without transitioning to a relay drug, which was 2017. From what I've read, 6 months is far too long to wait to start another drug after stopping Prolia - it has to be an almost immediate transition to prevent the rebound fractures. That is so sad and I do feel for you (and all the others who have had their lives ruined by this drug). It is just so unfair. Did you have all 10 vertebral fractures after you stopped Prolia in 2015? Which drug are you on now - a bisphosphonate, presumably?
How dreadful that you are having hip problems and can't be seen by the hip specialists at your hospital for a year. I'm not familiar with the NHS (I'm in Australia) but understand it moves at glacial speed. Is there any way you can go privately for investigation/treatment?
Hello. Thanks for replying. The first 3 fractures were in 2008 tho I had had them probably for at least a year as I kept going to Acupuncture, physio and osteopaths. None of them noticed, it was my Gp who noticed a kink in my spine. I was also on hrt at the time as I had a bad menopause making it difficult to go to work. That drug was marvellous and I was eating a really healthy diet and walking after work each day but it didn’t protect my bones. I think I got the next 2 spinal in about 2013 and my hip in 2015. I was actually on Prolia by that time and asked if I could have Forsteo but the bone clinic said no. I couldn’t tolerate Prolia as I had loads of uti s. The doctor said if I couldn’t tolerate it he couldn’t do anything for me. It then took 6 months to get another bone clinic and as I was walking in I knew I had another fracture in my back. I was put on Zolendronic acid infusion then and I have since had 4. I rang the clinic in pain and distraught when I got the ala 5 holes and he still can’t see me for a couple of months. I have been told by the osteoporosis society nurses that I could have Forsteo at the same time which is what I am waiting to see him for. In answer to your Prolia questions I have sustained 5 vertebrae and one hip after Prolia and whilst on ZA. I don’t think that’s done anything. It was stopped for a year in the middle of chemo. I have been in remission for 17 months and had been hoping to really get on with my life but it’s been a dreadful year with fractures. Yes it is vertebroplasties that he has performed I have been to see a personal trainer this morning who was fantastic and my back held up quite well so I will be going on with that
From your posts I see you ve had a dreadful time and I wish you well
I am going to try and get to see a different hip surgeon now. As I m sure you ll know health problems take up a lot of time with constant phone calls and thinking ahead.
Hi Pam - I couldn't tolerate Prolia either and, like you, had a few UTI's, although they didn't show any infection as such, but were more like intense bladder pain and frequency. So I stopped Prolia 19 months ago and went straight onto Actonel as a relay drug, with another 5 months to go. I thought I was doing so well getting off Prolia safely until I had the sacral ala fracture. I suspect it's a rebound fracture despite being on a relay drug, but I'm not sure I'll ever get the answer to that one.
It appears from what you said that you started on Prolia in 2012 until 2015. Yet you had fractures in that period of time despite being on Prolia. Did you ever miss a Prolia injection, even by a few weeks? That might account for the fractures.
Zolendronic acid is far stronger than the oral bisphosphonates, from what I understand, but I don't know if it would have protected you from fractures as you had a 6-month gap between starting it and stopping Prolia. The usual course of treatment as I'm sure you now know is to go straight onto either the oral bisphosphonate or the IV drug, ZA. Still, to have had 4 fractures while on ZA sounds unusual, but then I don't have a medical background. Possibly your underlying health conditions and prior medical treatment, i.e. the chemo is the wild card in all of this. No matter - you're having a terrible time and I really do sympathise. Your situation is far worse than mine and I can only admire your strength of character in dealing with everything so calmly and trying to find solutions.
When you say you've had 5 ala holes, presumably you mean fractures. Looking at the anatomy of that area as I've been doing because of my own ala fracture, it doesn't appear to be a particularly large bone (one on each side), yet you've had 5 fractures. That is so unfortunate. It is apparently a very unusual bone to break, with the incidence being about 5.3%, from what I've read. It is mostly the elderly who have osteoporosis and younger perople who are athletes who fracture their alas. Yet you've had so many. Oh Pam, you've really been through the mill.
I agree - I would try to find another hip surgeon who can see you soon. You certainly can't wait another year. I do hope you get in to see someone soon. Keep pushing!
Hi VikkiI did have Actonel after HRT then my cousin died from cancer of the oesophagus and Prolia had just come out so I asked for it!! No I never missed any injections, but had always had UTI,s so I guess I was more susceptible. I definitely had my hip fracture whilst on Prolia and that was when I rang the nurse and she said should I carry on with it as I had just had a dexa scan that showed my hips as gone back to osteopeonic which was ridiculous as it fractured straight after. None of my history makes sense and I got the first fracture on ZA which I like I said I assumed was rebound as I hadn't been on anything for 6 months. My Leukaemia was actually picked up after I'd been to Casualty 3 times in 3 months with terrible back pain. This was eventually picked up after 2 fractures were found but for some reason, thankfully, they did a special blood test which saved my life.
In answer to your ala fractures, yes my back surgeon did MRI which showed up, he said pelvic/ala fractures and had to refer me to neuroradiologist who did the vertobroplasties and he described them as holes. I have to say I just go along with everything, which may have been wrong with some of the drugs, but the bone clinic in particular is supposed to be the best in the area.
I have had to put my trust in everyone just to hopefully carry on with a quality of life although this last year has been shocking.
I am seeing the bone clinic in November so let's just see what he says. He has been playing devils advocate, saying, I may have had more fractures were it not for the drugs!!! At the moment my daughter has just found me a personal trainer who I saw yesterday and for the first time in 2 years did very basic back exercises sitting on a chair. I couldn't lift my legs very well but I think I have no muscles left and must work whatever I can.
You must think it funny that I've never really questioned much, but like I say I just want to get on with it. I still do sometimes think to myself I can't believe what's happened, but there is only one way to go. I am also on a list to see a dietician who is supposed to be very good, so let's see!
I have a saying and I just keep saying No Stone Unturned. I just have to keep on, as do you and we have to play the cards we're dealt.
Thanks again for replying, as I say I have never posted before and sometimes I wonder if people would believe me!
Hi Pam - of course people believe you. You've been dealt a very bad hand of cards, to use your apt analogy, but there are many more on this site who've also had a terrible time through no fault of their own. There are many I've come across who, like you, were not put onto a relay drug when stopping Prolia, and are living with the consequences of multiple vertebral fractures caused by medical ignorance and Amgen not continuing the clinical trials for long enough to see what would happen when people ceased taking Prolia. There are so many stories like yours, except that in your case you've also had the leukaemia to contend with. In that regard, I'm surprised that blood tests weren't ordered sooner. Whenever I go to a GP here, the first thing they do is order a panel of blood tests. I probably lose about a litre a year to blood tests! So it sounds as if your leukaemia was diagnosed almost by accident - not good but at least you were diagnosed eventually.
It's interesting that you had Actonel before going on to Prolia as I read somewhere that being on a bisphosphonate before going on Prolia offers a level of protection from vertebral fractures after stopping Prolia without a relay drug. Obviously this unfortunately didn't happen in your case. As you say, your history doesn't make sense, even to the medical professionals. You've had so much happen to you and so many medications that it's probably difficult for doctors to unravel things and work out what caused what. So much with these meds is unknown, and I think a lot of what doctors advise is educated guesswork. Sometimes these drugs cause more harm than good and that appears to be the luck of the draw. There must be millions of people on Prolia and the bisphosphonates who take them without any side effects or adverse effects. We're all so different. I personally just want to be off these osteoporosis drugs for good which hopefully will happen in March 2022, the 2-year anniversary of my being on the relay drug (Actonel). I'm just crossing my fingers that I don't have any more fractures before then (or after). I didn't have any problems before being scared into having Prolia injections and 3.5 years of problems since I started! Nothing like yours, of course, but still annoying.
It's great that you've found a personal trainer as yes, the muscles do obviously get weak with the sacral ala fracturing (not sure about the other types of fractures) and of course lack of use makes things worse. Getting your muscle tone back is a great start and will make you feel more in control. I couldn't even sit up in bed unsupported or even stand up unassisted after the ala fracture which was very scary. I had to push myself up from my bedside table! It was almost as if my pelvic/lower back muscles had gone into shock and just packed up and refused to co-operate. Luckily in the hospital I was in one of these wonderful beds with an electric back and foot raise/lower mechanism as I couldn't sit up otherwise. Things got a lot better after a week and now that I'm at home I can sit up in bed on my own and stand up holding my thighs and wobble over to my crutches. I can hardly believe that a month ago I was walking 40 kms per week. As we say here, one day a rooster, the next a feather duster!
Keep me posted as to how things go at your bone clinic appointment in November. My advice would be to do a lot of reading around the recommendations before jumping into any course of treatment. It's best to be as informed as possible. I wasn't when I agreed to have Prolia injections and regret it now.
Have you been having regular DEXA scans over the years that you've been on these drugs and having fractures, Pam? You said your DEXA after your hip fracture showed that you were osteopenic which, as you say, doesn't make sense in light of the hip fracture. Have you had other scans since then and do you get given a copy of your results so that you can track what's happening?
Well I have only had one which was the first one when I was diagnosed, but since then the machine cannot read my spine because of the cement so have had wrist and hip scans which again never highlighted anything. My last hip scan and wrist was in August last year and showed nothing. I was even discharged after a scan in 2014 done in a local hospital saying didn’t need any more consultations as everything was fine! I saw my back surgeon yesterday who xrayed pelvis , spine and hip. Worryingly he had forgotten about all cement in my pelvis. He says he has never seen anyone with so much cement!! Anyway I guess I m still upright because of him. I owe him a lot. He s ringing again in 6 weeks. Meanwhile the pain persists. I am seeing bone man next week and am trying to see someone most days, it is a good distraction. Also doing excercises and seeing dietitian. Keep fighting!
Even though you only had your hip and wrist scanned last year, it's still a DEXA scan and can at least show part of the picture of your bone density. It might be useful if you asked for your T-scores figures. I've never heard of a DEXA scan "showing nothing" and being told that "everything is fine" - presumably they mean no fracture, but it's the T-scores which show the progression of your bone density that you need to know. I have had DEXA scans every year since 2012 when I was first diagnosed and have put all the results into an Excel spreadsheet so that I can easily track what's happening with my bone density. I think it's really important to know the exact figures so that you can make your own informed decisions about your treatment in conjunction with your doctors. If I was told I was osteopenic, I'd be delighted but, in your case, you still are having fractures, so something is not right. I wonder if they're misreading your DEXA scans?
Yes I know. Nothing about me makes sense. I haven’t had a reading since the first one 12 or 13 years ago. Also after I left the clinic who said he couldn’t help me if I couldn’t tolerate the Prolia, I have had hip and wrist scans on two more scanners at different hospitals. My surgeon has got me back to the first one now which is supposed to be the best and I m seeing him on Nov 1. I will ask him about not getting actual readings then. In the meantime I am keeping busy but only with admin type stuff as my hip is stopping me walking very far at all. I am most upset about this as I could always walk through everything after vertobroplasties. I am as you know doing my excercises too I am also being interviewed by the local press/ radio for Osteoporosis week next week!!
I'm getting better with each passing day, Pam. Thanks for inquiring. I can manage to walk around my kitchen without using crutches - as long as I'm near the counter top in case I feel wobbly. The excruciating pain has gone and I have a dull, sometimes increasing, ache in my lower buttock area. But that's ok. I don't want to take pain killers and the ache is reasonably low-level most of the time. I can drive which is a huge plus, so can get myself to the hairdresser and supermarket tomorrow. The groceries will get loaded into my car for me - Click and Collect .
I think it's terrible that you're walking around on what you think is a fractured hip and in so much pain. You mentioned getting an x-ray in earlier message - are you able to do that? Can you not get a GP to expedite an x-ray as, to me, a patient in that degree of pain and with your history of fractures would constitute swift action. I suppose the worse case scenario is waiting until you see your surgeon on 1 November and asking him to refer you for the necessary scans to make the diagnosis.
I was wondering about your exercise regimen with your personal trainer? Is that a good idea on a suspected fractured hip? Presuambly he knows about your concerns.
Wonderful to hear that you're going to be a spokesperson for Osteoporosis Week!
It’s great that you can drive. It’s awful when you lose your independence isn’t it and great to get your hair done for confidence and just to feel better I try to dress as nicely as I can to cheer me up. Not that it lasts long.
Yes when I saw the surgeon on Wednesday he did X-rays as obviously if it shows up straight away it’s much better for everyone but I think that with the pandemic it’s whatever is quicker and cheaper. Nothing showed up but it never ever has with me, not even my last hip
He said he would ring in 6 weeks to see how I am which is good of him as he has a two year waiting list. Unfortunately I had such a bad week my daughter took me to Casualty yesterday and no help as they said they could only X-ray and didn’t take bloods and said was it Siatica? As far as I m concerned, I ve ticked another box and am going to ring surgeons secretary again and ask to speak to him soon to get a scan. I believe they’re fairly backed up but am so desperate I ll say I ll pay for it. I could just get one at a private hospital anyway but I would rather he gave the instructions as to where to scan
Anyway after a dreadful few days we ve been out for coffee to my eldest daughter and then to a garden centre with the other one. Great distraction, just dreadful when you come back in. I ve just taken some oramorph which I have for breakthrough pain and am just hoping against hope I get something in a couple of weeks to show up
Yes the personal trainer, I did think about that but they are such baby excercises sitting on a chair, I ll see her on Tuesday so we ll see. She was aware of my concerns last time and these are basically to build up my hip muscles
Anyway I ll keep you informed and Well Done for driving and getting out
Oh dear, Pam - you're not having a good time at all, and to go down to Casualty and not get any diagnosis must leave you feeling quite helpless. I would push for a private MRI through your specialist if I were you. That's the gold standard diagnostic tool and will show many things that a plain x-ray won't. There might be something else happening in your hip which isn't quite a fracture, but is just as painful. You can't continue on like this.
Nice to hear you are keeping your chin up and get out to do some fun things with your daughters. That's really important - otherwise life just turns into pain and misery with no respite. The fun things enable us to carry on.
Keep us posted as to how things go with your specailist, both regarding getting an MRI and at your appointment in November.
Thanks Vikki will do. I have had MRI with every fracture but they like to do an X-ray first so I m just playing the game. I m going to ring him in a week or so and ask for one. The trouble is he s the nicest man and I have asked for a private one before and will usually say no I ll get you one, but it doesn’t register that waiting is still another 6 weeks, which in his mind is nothing but not good in mine. Anyway I am going to do that and am continuing doing one thing every day. Yesterday I did a little bit of ironing ( my husband wouldn’t let me do any more) and had a coffee with a friend and saw the personal trainer. I told her people were questioning whether I should be doing the excercises but she said to do what I can and never to push through pain. Mind you I was exhausted last night. I always feel hopeless at night but get up ready to do it all again!I hope you are continuing to get stronger every day. It’s the only way to go isn’t it?
Hi Vikki how are you? I just thought I d let you know after second hip man consultation. ( I saw his side kick who only did X-ray. Was very patronising and said mild arthritis. I was really upset. Luckily my lovely back surgeon could see some sort of uptake on my right hip, did ct scan and yes it’s definitely fractured. I m relieved but not at the thought of what’s ahead, another hip replacement but I ve only just been referred. Hopefully he might think kindly of me. I now cannot walk without help on both sides. We ve also paid for my 70 th birthday party in 10 days and i m gutted I won’t be able to stand then. To think I ve been telling them since October and had an awful Christmas tho much worse now!! I now have 17 fractures and I ve still to see the bone clinic the consultant is on long term leave who was seeing about teriperitide. I suppose I ve got fracture results in the end but what a struggle
Hello again, Pam. I'm so pleased to hear that you've finally got a diagnosis, even if it wasn't one you wanted just before your 70th birthday celebrations. The good thing is that at least you know what you're dealing with and can plan the way forward, your hip replacement. Even if you can't stand at your birthday party, you can look forward to your 71st birthday with a new hip and being able to stand without pain then. I just feel so sorry that this has been such a protracted and painful experience for you with what sounds like a degree of medical mismanagement, heel-dragging and unhelpful doctors. As you say, it's been such a struggle which is so unfortunate and so unfair in light of all your fractures. They really should be pulling out all the stops to help you and not leave you in pain to push things along to find answers. Do you have any idea how long it'll take for you to get in for the op?
Another good thing is that you're able to be upright after all the vertebroplasties. I've read in the last couple of months that a lot of them are unsuccessful and cause more fractures, but fortunately yours seem to have worked. You must have a very good neuroradiologist (who I think did your surgery)! Do you know when you'll be able to see the consultant at the bone clinic regarding teriparatide? Apparently that is great for building bone, but your case sounds very complex and I suppose a lot of things have to be taken into consideration. Anyway, fingers crossed they put you onto something to prevent more fractures and improve your bone density. It might be helpful if you pushed for another DEXA as well and got the figures to post here and compare with your previous ones. That's the only reliable way to track your osteoporosis.
Thanks for asking how things are with me. I thought they were fine until the physio recommended that I have an MRI so that she could confidently increase the intensity of my exercises. I was shocked when I got a phone call the same day as I had the MRI (10 December) from the endocrinologist who told me that I'd had two more fractures, this time the right sacral ala as well as my pelvis, and that the original fracture of the left sacral ala, instead of healing, had widened and lengthened! So all of a sudden there was a flurry of medical appointments with doctors and specialists all jumping around trying to work out what to do, all in the weeks before Christmas, so very stressful. I didn't send a single Christmas card! Ultimately it came down to my spending a lot of time at home resting which is anathema to me, and I've been limited to 3km walks only - very frustrating. I think the other fractures must have happened in October, shortly after the first one, as I kept telling people that my right side was hurting, and yet I'd broken my left sacral ala. I suppose there was so much pain that I just assumed it had something to do with the left fracture and was told by the physio and doctor that the right muscles were compensating for the left-side fracture. Well, they were wrong! Anyway, the good thing is that I haven't had any fractures further up the vertebral column (so far - touch wood!) and can do most things except lift anything heavy, like a vacuum cleaner, grocery bags, etc. In March it will be 24 months since I stopped the dreaded Prolia and I'm going to keep going on the Fosamax (I switched from Actonel in November) for another few months to be on the safe side before hopefully stopping that too.
I hope you have a wonderful 70th birthday, Pam, despite the pain and uncertainty. You are very brave to deal with all this so philosophically. Your family sound very supportive, so you are lucky there too. So celebrate all the good things, and once the second hip op is over, then you hopefully will be able to stand again without being in pain and be a lot more mobile.
Hi VickiThanks for getting back to me. It sounds like you ve been having a hard time too. It’s such a shame when we like to get out walking
I ve been out for only a few steps today with my husband. I can’t believe how much worse it’s got in a week
I m going to ring the hip surgeon s secretary this afternoon and see if the referral is there and try and start hassling. I think my vertebroplasties have kept my spine straighter and also it’s usually at least 6 months before it’s done and there’s never a sign of the fractures healing. The last dexa scan I had was rubbish they just said no risk of fractures!!! They don’t give scores when it’s done on your wrist. I definitely would blame Prolia for my first hip and most of the subsequent ones.
It’s hard to get distractions otherwise it’s an awfully long day and I lose at least 3/4 hours sleep every night and can’t take any more painkillers. I think the steroids probably made me fracture and also the cancer drug methotrexate which I had weekly for nearly 3 years. Anyway at least I m here to moan about it.
I m pleased you can do most things Vicki( sorry I ve been spelling your name wrong) and we ll both just keep on trucking ( when I ve had the replacement that is. Ugh)
Yes, phone the hip surgeon and keep pushing for the surgery, Pam. Once you have a date locked in, I'm sure you'll feel hugely relieved. It's awful about the pain, though. Could you ask your surgeon if there's anything he could recommend you take in the meantime until you have surgery? Perhaps that will also make him realise how bad things are for you.
Hi VickieI saw the hip surgeon s specialist nurse who said I had arthritis. I said to him did he want to look at the ct scan which showed acetabula fracture. He got the surgeon who seemed irritated and couldn’t understand how my hip fractured with no trauma. I told him just the same as the other one. He put me on the urgent list but he said that would be 3 months and wanted an MRI. He s now spoken to the first surgeon who did my other hip but doesn’t want anything to do with this one. He wants to see me on Wednesday but I don’t know why. It can’t be about a date as he would have written. I m really worried as I m not getting any fresh air and can hardly move. I asked my Gp if I should pay which would be £20k and she said if I had all the money in the world I should stay with the nhs as I am complex and if anything went wrong in the future I couldn’t get back on nhs. Also they’re giving me teriparatide soon which I definitely couldn’t afford. Mind you that only protects the spine I could have done with it 6 years ago when I asked
Anyway we ll see what he says on Wednesday my daughter is taking me
Thanks for the update, Pam - lovely to hear from you and also great that you're pushing things along and investigating options regarding your second hip replacement. It does sound as if staying with the NHS for surgery would be far better as your GP advises, not only because of the exorbitant cost of going private but also because of not being able to get back on the NHS again if you need to which sounds highly likely. Three months must seem like an eternity when you're in pain as you are, but the time will pass as you know, and the day will soon arrive, maybe sooner than expected if you're on the urgent list. Presumably the three-month time frame is the worst-case scenario. Just keep focussed on other enjoyable things in the meantime if you can, even the little things like going for a coffee or to the garden centre with your daughters or a friend. Hopefully when you see the surgeon on Wednesday, it will just be a formality to examine you and order an MRI and sign off on the surgery. Do let me know what happens.
Everything is OK at my end, thanks for asking. I got rather worried about three weeks ago as my right-side pelvis was painful, so I managed to have a telehealth consult with the orthopaedic surgeon and requested an MRI which he was happy to order. That showed "significant improvement" which was a huge relief! The orthopaedic man told me during the consult that a fractured pelvis can take up to 18 months to heal, so maybe that is why I have the residual pain. I'm still only walking about 3-4kms a day, trying not to cause any more issues. I'm speaking to the endocrinologist next week and hopefully she will say that I can increase my distance as it's very frustrating to be on a leash, so to speak, and I don't feel as if I'm getting enough exercise.
I had a DEXA scan last week and will have a CTx blood test tomorrow, so those two tests should give me a good idea of how my bones are doing after two years off Prolia. Once my bone turnover as shown by the CTx is stable, I intend to start weaning off the Fosamax but feel a bit nervous about it as I don't want to have any further fractures. It's all about getting the timing right, so the endocrinologist will have to guide me on that one.
I hope you enjoyed your 70th birthday, Pam, despite your concerns about not being able to stand. Hopefully once your hip has been operated on, things will improve for you. Have you managed to find anything which works more effectively for pain control?
Hi VickiHow great that you’re showing significant improvement and can walk a little. It’s still a good distance and you ll be able to improve on it gradually. All good!
Unfortunately I m going the other way. I forgot to mention I had to cancel my party as I was in no state to even go, let alone enjoy it. Seeing as I had paid the full amount the hotel let me move to the beginning of June but guess what - my bad luck has struck again and my appointment with surgeon was cancelled as he got Covid. Just heard on Monday from his secretary and she of course can’t say when it will be. Of course I don’t even know what he wants. I seem to have hit a wall, but I ll hit the phone again next week and see if I can get my next appointment
I ll keep you informed of my next instalment. Keep walking
I'm so sorry to hear that your appointment with the surgeon got cancelled at such short notice, Pam. How frustrating for you! Hopefully he'll get over his bout of COVID soon and be back at work with only a small backlog. I'm sure you'll get a phone call to reschedule shortly, once they know when he'll be able to see patients again.
I'm also sorry that your birthday party had to be cancelled - so disappointing, but it might have been for the best if you wouldn't have been able to stand or even sit without pain. Once you've had your hip op (which is probably why the surgeon wants to see you), you'll feel more enthusaiastic about rescheduling your party to a time when you can enjoy it.
Life can be a real trial at times, can't it, but you obviously have the perseverance to push things along for a good outcome. Good luck with everything and stay in touch.
Hi Vicki how are you doing?I just thought I d update you. I ve been to A and E again as I had been sick the morning before with taking my meds too early ( never happened before) but it really pulled my back and I was sure it was T 7 as that s the only t left but it was going into spasm every 15 mins. I couldn’t speak and my breathing was affected. Anyway after an X-ray which I told them wouldn’t show anything they said they would keep me in but I didn’t want to it was for pain control which I have anyway can’t have any more. I went home at midnight after 7 hours rang backman next day, he s done mri and it’s confirmed
He doesn’t really want to do vertebroplasty before hip. My hip man got Covid and my daughter then rang his secretary and got me appointment last week. I can barely walk now round the house. Never been so bad. Anyway hip man was very nice and apologised for my last visit as he thought I wanted someone else to do it. I was with him for 2 hours he was very thorough telling us everything he might do. He won’t know till he gets in to do replacement if my bones will hold. He says I ll probably have to recuperate for 6 months with no weight bearing on it. Crutches or zimmer. I ll do it if I have to. Of course I have to get him to look at the other replacement which is very painful but I couldn’t bring that up. Anyway because he has cost me a lot of painful time he has booked me in for 10 May and will take three quarters of a day. Anyway that’s progress Covid permitting. Sorry my tales are always War and Peace. I do hope you’re doing ok. Lots of love Pam xx
Hi Pam - I'm so sorry to hear that you're in so much pain and can't walk easily and now have fractured your T7 into the bargain. You must be feeling so upset and frustrated, to say nothing of the pain which must be excruciating. Are the pain meds you have at home taking the edge off it? It's great that you managed to have an MRI so quickly though and got confirmation of the issue. At least you know what you're dealing with, which must be a relief of sorts.
The good thing is that you have a date for your hip surgery at last - and have reconciled with the hip surgeon. It must be good to know that he's on side again. Yes, six months on crutches or a frame is a long time, but the benefits will be enormous. You should be able to walk easily and without support again when you come out the other side of the recuperation period. And 10 May is only four weeks away - that's fantastic! Once your hip has been done, then you can have your vertebroplasty, presumably - or are you going to try to get your other replacement seen to first? You do have a lot going on and it must just feel like one thing after the next, but you're managing the issues and working through them methodically, so hats off to you!
I'm doing well, thanks. The endocrinologist switched me from Fosamax to Actonel a month ago as I started getting stomach pains which she suspects could be an ulcer caused by the Fosamax. It does have a reputation for causing digestive tract issues as it's quite erosive, whereas the Actonel is enteric coated, so bypasses the stomach and is absorbed in the large intestine. My CTx is heading down which shows that the bone turnover is being suppressed as it should be, and my bone density results from my DEXA shows that my hip is still better than before I started Prolia, although my spine is a bit worse (but still only just borderline osteoporotic). By June, when I next speak to the endocrinologist, I should be able to start weaning off the meds. I'm still concerned about having more fractures, but the endo thinks that I'm just about beyond the Prolia rebound fracture danger period now as it's 24 months since my missed Prolia injection. As I'm sure you'll agree, having fractures really makes you feel very vulnerable and it's almost as if you're just waiting for it to happen again. Fingers crossed for both of us that we're over the worst now!
Please stay in touch and let me know how your op goes in May.
Hi Vicki I sent a reply but I m not sure if it went
Basically first of all how are you doing?
Secondly I had my op nearly 5 weeks ago which was awful but I am feeling and walking much better now and feel as tho I have been given my life back. I still have to have t7 done in about 3 weeks and my other leg isn’t great but I m going to rest a while and hopefully start driving in a few weeks
That’s being optimistic but I think we know it’s the only way. How can you tell I ve had a good day!! I was at Leukaemia clinic for a checkup which was good and saw a few old friends and even had a coffee at the hospital with my husband which was also nice as we haven’t been able to do that for months
I hope you get this one, I don’t know what I ve done wrong
Lovely to hear your good news, Pam! You do sound very chirpy and optimistic, so yes - definitely a good day for you! I'm so pleased to hear that your hip surgery of May has given you your mobility back. You had mentioned something in a previous message about the bones possibly not holding, so that obviously wasn't an issue. Now for the vertebroplasty on the T7! Are you still having pain in your other hip? Are you going to speak to the surgeon about that? Presumably you have another five months on crutches, but there is light at the end of the tunnel. You must be delighted!
Things are fine at my end, thanks. I spoke to my endocrinologist today via telehealth, and she has agreed that I can stop taking the Actonel as the rebound period post-Prolia should hopefully be over by now. I've been on the bisphosphonates for 27 months and had been having increasing side effects since early May, and just feeling quite unwell overall. So I was relieved that I didn't have a battle on my hands to convince her that I needed to stop, but there is always a risk that something unforeseen could happen, like another fracture. The medical fraternity just don't know enough about managing their patients off Prolia. You, of course, had your own bad experiences with it. So fingers crossed that all goes well. I celebrated my "freedom day" by going for a longer-than-usual walk in the winter sunshine! I still have to have monthly CTx blood tests for the next few months, starting tomorrow, and might have to reconsider a bisphosphonate if they start increasing too much, but hopefully not. So it's day by day here, as it is with you.
I hope that things continue to improve for you, Pam. Hopefully you'll be in a lot less pain soon and pain-free completely in the not-too-distant future!
Hi Vicki. I thought I d see how you were doing. My hip surgery turned out to be better than expected so I was able to weight bear on it. It has been a success date I say it. I had the last vertebroplasty for T 7 in August. I now have all L s and T s done apart from L 5. He says he’s only done that once. I am currently waiting to see him about the relentless pain in my left leg which Gp and hip man say is coming from my back. The poor man can’t get rid of me. I am at the moment more normal than I ve been for 5 years. I am in pain all over really as of course it’s getting cold and my bones don’t like it. I have been using teriparatide for 3 months so we ll see but of course it’s closing the stable door etc really. Anyway I just thought I d update you and see how you are
That's wonderful news about being able to weight bear on your new hip, Pam. You must be SO pleased! Also great to hear that the latest vertebroplasty op on your T7 has been a success. It's such a pity, though, about the ongoing pain coming from your back, but I'm sure you'll persevere and get to the bottom of that too and get it fixed. You certainly are a work in progress, and hats off to you for being so persistent and managing your own health care with such good outcomes. So you'll be able to celebrate your 71st birthday next year with a party and be on your feet dancing at it!
My news is that I'm off the Actonel now with fingers firmly crossed that I'm beyond the Prolia rebound period after 30 months. The endocrinologist said that there are no guarantees, but that she thinks I should be safe now. My fractures appear to have healed although I still have a slight twinge in my right-side pelvis if I do too much, like walk too far, sit for too long, or bend awkwardly like when gardening. I had it checked out with yet another MRI in June, and they couldn't see any issues. So I just have to be patient!
I hope that you get good results from the teriparatide and also that you manage to find the cause of your ongoing pain. Do keep me in the loop and let me know.
So sorry to hear of the pain you are having, have you been given something to help manage it??
I have found your post interesting as 3 years ago I had the same symtoms as you have described ( I still have problems now in that area but not consistent thank goodness)
I was never diagnosed like you and also Fruit and nutcase have been.
I got blank looks and sent away being told to take something for the pain!!
Unlike you I do have multiple fractures.
Last year I had 2 more fractures one in the Thoracic and one in the lumbar.
I had agreed to trying Prolia and had my first and only injection end of Feb 2019 I was told the effects would last until the November (9 months later) I did not follow up with a second injection because I had suffered many bad side effects.
Just under 6 months later ( last year) I had the the 1st of my 2 fractures the 2nd one followed 6 weeks later.
Although many seem to think Rebound Factures do not occur after only 1 injection I strongly disagree with this.
I think it is all down to the idividuals Bone condition.
My T scores at the time of the injection were _4.6 Spine and -4.2 Hip.
I discussed my concerns with the Specialist I am under, and I have to say he was entirely honest in that he said it is not usual to have rebound fractures after one injection but it can not be ruled out it is something we can not know for sure.
I wish you a speedy recovery, take very good care of yourself as unfortunately that is what the majority of us are left to do.
Thanks very much for your good wishes. I now know how awful it is to be incapacitated by a sudden fracture, so do sympathise even more with your situation. The pain alone was unbearable, but under control now with Endone which I will stop ASAP and switch to something more innocuous, like paracetamol.
It does sound as if your lumbar and thoracic fractures were rebound ones despite only one Prolia injection. There is so much about this drug which is unknown. That is why I suspect the hand of Prolia in my sacral ala fracture, especially as two other people on this site have fractured their sacral alas after being on either Prolia or a bisphosponate (or both).
You're right - we all have to take care of ourselves as, sadly, our medical professionals are not.
Have read so many horror stories on here feel so sorry for all your pain.After reading about Prolia,inc.bumf they sent me I refused it.The most common fracture as side effect of it seems to be femur!I also had a ridic time trying to get xray,told for 2 months it was kidney pain,it was from multiple vertebral fractures.Luckily got new GP who at least gave me enough pain meds.I do think that bones need rest to heal,keep stressing them could do more damage & take longer to mend.Hope you’re soon better & the pain eases.X
Thanks for your good wishes. You have obviously experienced a lot of pain yourself with your multiple vertebral fractures, especially as they took months to be diagnosed. How dreadful.
What drug were you on if they weren't caused by Prolia?
Not on owt except Adcal since fractures caused by OP they say.Had bad back inc.discs op. forever.Married,soon divorcing,Osteopath,kept me going all these years or did he make it worse??🤔😁Will never know…Hope things improve for you,mine only getting worse,shall end up a puddle of chalk soon 😂😂
No,just Adcal,chemist says has vit D in it.I have no follow up or med care,probably coz I refused Prolia they’ve just left me to it.Got a physio after 3 months but he was useless,made me worse,just tried to bully me into having Dexa which I can’t do re travel or lie flat,even doc agreed wasn’t worth causing further damage.It seems appalling so many women have OP,I also have M.E & there is so little research or help for either of them.It’s a diy situation.Hope yall can have good day whatever state you’re in! X
Hi. I've never taken medications, however.........The fall I had which resulted in two spinal compression fractures also cause me intense pain as you describe.....I was unable to sit for a few weeks and over the following months and could only tolerate sitting on high flat seats or surfaces. The hospital and my doctor shrugged their shoulders ...it seemed like they ignored it or put it down to the spinal fractures even though I said it was a different kind of pain.
The Occupational Therapist at the balance class did not ignore it and arranged for my bed, loo and furniture at home to be made higher. I find it interesting that others on this site also had difficulty with the medics not acknowledging this pain or checking it out.
My friend's husband had been a medic in the Airforce in his youth and suggested I try a "Sacroiliac Belt" to see if helped. I was a little cynical and had never heard of them. I bought one from the internet for around £10. It is simply a wide elasticated but strong belt. I wore it over my clothes, covered by another layer, over the area where the pain was. Relief was instant. I wore it for about 8 weeks and have never needed to since. (Now, over 2 years later I am able to sit for a short time on a normal height chair and don't have to carry a bolster seat everywhere I go)
Of course we cannot know if other's difficulties are akin to our own. I simply thought that others might benefit from what could be, a simple and cheap solution which could not do any harm to try.
I'm so sorry to learn of your difficulties, along with everyone else struggling with these issues. Positive thoughts being sent out to all of you. xx
It is awful isn’t it how doctors seem uninterested in that level of pain. Although saying that when I took myself to A&E the young GP I saw there realised that I was in terrible pain and got me sorted out with physio and painkillers - that was in June though - I wonder if he realised that it would be October and I’d still be waiting for NHS physio! I ended up paying privately.
I’m really not so sure it is as rare a condition as we are being led to believe, when you look at research it seems to be fairly common - especially in the elderly and in people with osteoporosis - it’s just not recognised.
Once I started to dig around I realised I had given a textbook description of a SIF - obviously my doctors either hadn’t read that textbook or had forgotten about it.
It’s also common in the military - there it is caused by carrying huge weights - two people hold a back pack for someone to put on - then once the person carrying it is strapped in they let it go and the poor soul has to carry it him or herself. Athletes also get SIFs. So it’s not something very rare. I just think it’s unrecognised - if granny has a bad back tough luck - what does she expect at that age!
When I fractured my wrist I remember talking to the radiographer about the pain and how us oldies were quite stoic about it and her telling me that she has known elderly ladies to walk in with fractured pelvis. I found that hard to believe but here I am walking about with a fracture in my pelvis.
There seems to be very little that can be done for that sort of fracture other than balancing rest with gentle exercise - and there’s a fine line there. I know I’ve got to keep moving - just not too much ☹️
My physio and physio trained Pilates teacher both say do nothing that causes pain of any sort - even if it something that they tell us to do and should in theory be safe! I’ve never had that problem but I’ve heard of people being told to do things that have caused great pain and I think that’s where you need to say you are not prepared to do anything causes pain - no matter who tells you to do it.
I never bought a sacroiliac belt but when I was first injured I used to walk (well hobble) around with my hands on my pelvis ‘holding myself together’ so I can imagine you got a lot of relief from it. I was very lucky that I’m able to sit down on pretty much any sort of chair - it’s standing up for any length of time that’s my problem. x
That's very interesting regarding the sacroiliac belt. Thanks for sharing. If the pain from my fractured ala doesn’t ease off when I go home and have to start being on my feet a lot, I'll look at getting one to support that area.
Thanks for the positive thoughts. We walking wounded need all we can get 😊
Yes, I have my bone turnover markers measured every 2 months. The CTx isn't as suppressed as it should be and in fact the last one had spiked by 50% as I had cut down on the relay drug. I've been using Actonel 35mg weekly which is, according to the literature, untested as a relay drug. The relay drug recommended is Fosamax. I've been in touch with someone on this site who used Fosamax successfully to wean off Prolia, and her CTx scores were far lower than mine for the duration.
I cut down the Actonel to fortnightly for 6 weeks after my bone turnover appeared to stabilise over 3 blood tests, but after the CTx spike in August reverted to taking it weekly. Maybe that spike in bone turnover was enough to cause the sacral ala fracture - who knows? Unfortunately my endocrinologist is on holiday and I can only speak to her about this in a month's time.
I know one thing immediately after starting taking prolia, my husband developed a fracture in the bone behind the knee let's say. Probably is a very bad drug
Yes, I've read about people having an assortment of unexplained medical events, even osteonecrosis of the jaw, after only one Prolia injection. In my opinion it is a dangerous drug in the hands of ill-informed GPs. Everyone reacts differently. I had 18 months' worth of "mystery" medical events on Prolia, all of which turned out to be listed side effects, none of which my then-GP knew anything about.
So sorry to hear about your husband's knee fracture. As you say, a very bad drug.
Had to add my story. Severe osteoporosis of the spine and 3 x spinal fractures. They have healed and dont cause anything like as much trouble as this new pain which develped18 x months ago. Knowing that exercise of the lower part of the body caused me trouble,
I tried to exercise the top half with waving arms in the air etc. and I guess it must have pulled on something, plus I had been walking on uneven field ground more regularly, I noticed a dull
ache over the sacro bone plus hooking pain in the hip (has anyone experienced the hooking
pain in the hip as well, and also pins and needles going down like a nerve along the coccyx.
18 months ago, got out of bed and severe pain shot across that sacro area and buckled my knees, one muscle spasm after another I sat shaking in the chair for half an hour.
Since then, I have had all the same as everyone else on here, it has improved but at the same
point of standing (around 10 minutes) the pain feels sore (is that how you would describe your pain (as sore pain) and I have to sit as it gets worse and worse at that point.
I have slept in a recliner chair for 18 months as I havent had those awful muscle spasms since
then.
I havent been out for a walk since and feel like I am now stuck in this recliner chair and my old life is over. I have had two X rays which showed up mild osteorarthitis and nothing else.
In March this year I had a PETscan for something else and asked them to look at it over that
area of the sacro and it showed up nothing. They are now calling me in for a face to face examination but I cannot see that is going to show anything other than I have pain when someone presses on the sacro joint. I find a belt more around my waist and a bit on the hips
helps sometimes, but hurts the hip when pressing on it if too tight.
Does anyone know what specialist you would see for this sort of problem?
I have not been on a bisphosponate at all (still sitting on the side of the table).
Anyone that has improved. How long does it take for this sort of problem to sort itself
out? Its been 18 months so far. (I also cannot lay flat on tables for examinations, eg
MRI and X ray (that was agony).
Are there any gentle ways of moving that help this problem? Exercises (very gentle)?
I'm sorry you've been in pain for 18 months. That is a very long time to not have a diagnosis. Having had a sacral ala fracture myself, I know how dreadful pain in that area can be.
Have you had an MRI of the sacro-ilial joint area? I know you said that it's painful to lie down for an MRI or x-ray but, if it helps you get a diagnosis, it's worth the short-term discomfort. I'm not saying it is a sacral ala fracture which is what I have, but mine wasn't diagnosed by either an x-ray or a CT sca. The MRI is the gold standard diagnostic tool. I'm not sure where a PET scan falls in the hierarchy. This type of fracture is largely not diagnosed by medical professionals as it is treated as generalised lower back pain. The vast majority of doctors would never encounter a patient with this fracture in their careers, so don't order the correct scan. I really had to push for an MRI.
Having said all of that, I understand that this type of fracture heals within 3-4 months and the pain should go by 6 months. So not sure why you're still in pain 18 months on. I'd still push for an MRI. You can't spend the rest of your life in pain.
I was actually very comfortable when I had my MRIs. The radiographer put nice soft pillows in various below me and I felt cocooned, it was all ok. I agree with you Arcadia it’s definitely worth pushing for an MRI. I was speaking to someone recently who said she had felt uncomfortable lying and she said the radiographer who did the scan told her she should have taken paracetamol or something before it so that’s an idea. Also don’t let them start cmon until you feel you are well enough padded out.
This article explains very clearly a sacral insufficiency fracture as a potential cause of lumbosacral pain: ncbi.nlm.nih.gov/pmc/articl... Do you think this could be the cause of your ongoing pain?
I find it really annoying that doctors talk about ‘diagnostic difficulties vague clinical symptoms and signs’. I honestly can’t see why early diagnosis is so difficult to make. In my own case my symptoms were certainly not vague, I described text book symptoms of an SIF.
The best diagnosis I got was from a GP based in my local hospital who said I had described sacroiliitis- it wasn’t that but at least he had a decent guess in the right direction and he prescribed physiotherapy and pain relief. I’d like to think that when I saw the physiotherapist, I might have been referred for some sort of X-ray or scan but I’m not sure that would have been the case.
Unfortunately that all happened in June and I still haven’t had a physio appointment from the NHS and my scans were all self funded.
I think it is because doctors don’t seem to believe their patients (especially women) are in such pain. That it could be an SIF doesn’t even seem to occur to them and it should when an elderly osteoporotic woman shows up in considerable pain. If they believed you and ordered an MRI or CT scan then I’m quite sure they would find the fracture. I know I sound exasperated and grumpy but I feel they just don’t want to look.
I quite agree with you. Doctors don't always seem to believe their patients these days for some strange reason and when they can't make a diagnosis, then it's the patient's fault - they're imagining the problem or have mental health issues. When I was having relentless unexplained side effects from Prolia (before anyone thought to connect the dots), I actually went to a new GP who suggested I see a clinical psychologist! I couldn't believe his attitude and never went back. Six weeks and many side effects later, another GP took one look at the swollen rash on my face and said "You're allergic to Prolia". At last I knew why I'd been so ill for 18 months!
I don't know why a SIF is so difficult to diagnose either. Possibly it's because of the reluctance to refer the patient for an MRI. Yes, they are expensive but, if they're going to diagnose the problem, then why not? When I limped into our large teaching hospital on crutches, the doctor sent my x-ray and CT scan for review by two other doctors. Of course those scans didn't show up the fracture, and I was sent away with a diagnosis of an inflamed muscle. They wouldn't do a MRI, even though I asked them to. I KNEW I had to have an MRI, so went privately - and that showed the fracture. Vindicated at last!
Isn’t it awful that it was suggested you see a clinical psychologist! What a nerve. Thank goodness you finally found someone who actually looked at you.
Like you I knew I needed an MRI - you just know there is s9mething very wrong don’t you.
I hobbled into A&E and couldn’t even get a basic X-ray which would probably have been useless anyway. I should have hauled out the extra pair of crutches I bought for my husband when he had his hip done. Or I should have said yes when asked if my bowels and bladder were affected. That might have got them jumping to action.
There we are both vindicated at last. It shouldn’t have to be like that - makes me mad when I think of all the drunks etc who pitch up at A&E, a friend was in hospital recently and there was a guy on his ward who punched a nurse - he had a nurse (they did two hours shifts and did paperwork) stationed next to him all the time he was on the ward. Yet genuine people are having to go through what we’ve been through.
Hi Arcadia...so sorry to hear about your fracture. I thought rebound drugs were suppose to prevent these fractures? I would think being on the rebound drug for so long you would not be getting a rebound fracture. Have you had your bone markers checked lately? Know I am thinking of you and hoping you heal quickly.
I've read in the past week that sacral insufficiency fractures (SIFs) can be caused by being on bisphosphonates which, while making one's bones look denser on a DEXA scan, actually cause microfractures in the bone, and so they eventually fracture. I've been on Actonel for the past 18 months to get off Prolia safely, so it might not be a rebound fracture. I will discuss with my endocrinologist in early November to get her opinion.
I've been having my bone turnover markers tested every 2 months and they're generally within acceptable limits apart from a sudden spike by 50% when I cut down on the Actonel to once every two weeks instead of each week.
I had it confirmed last week that my fracture was indeed a Prolia rebound fracture. Prof Lamy in Lausanne, Switzerland, who wrote the paper Stopping Denosumab said he knows of many women who have had this uncommon fracture after stopping Prolia. So clearly, in my case, either Actonel wasn’t potent enough to prevent rebound fractures or the 6-week period where I cut down on the Actonel which allowed my bone turnover to spike did the damage. My CTx was 930 at that stage - way too high.
My endo advised switching to Fosamax which I'll be doing with a degree of trepidation, starting tomorrow. I don't feel that I have a choice if I want to prevent any further fractures.
Hope your feeling better. I went to see the new endo on Friday. She was very nice but said I should also be put on Fosomaz come February as a rebound drug even though I only had one shot of Prolia. She was kind of pushing the Reclast but I said NO WAY..not to happy about going on Fosomax but she will be monitoring my bone markers every 3 months and as soon as I'm out of rebound I would like to go natural. She has been on 1200 mg of calcium and D3. I did like her better than the last endo...she was more sympathic but I did ask her if I had come to her with my bone density results what would she had advised me to do and she said she would of suggested Prolia also. Said she started 3 patients on Prolia on Friday. Don't get it....why are these doctors pushing Prolia...this a journey I can't wait to end. Please let me now how you do on Fosomax...any idea how long with need to rebound? Wishing you well. Stay in touch.!!
That's interesting that your new endo is, like your first endo, also advising Fosamax after only one injection of Prolia. Prof Lamy says in his paper Stopping Denosumabresearchgate.net/publicatio... "As far as it has been analyzed, the rebound does not appear after a single administration of denosumab, but after the second one [24, 25]". However, in the last week or so, I've come across someone on this site who posted that she had suffered a rebound fracture after only one shot of Prolia, so I suppose there are the exceptions. It's not an easy decision to make in your case. If you'd had two injections, going onto a relay drug is mandatory. So unfortunately you'll have to weigh up the pros and cons and decide. At least you can stop the tablet whenever you like if you have side effects, unlike with Prolia.
The recommended period on a relay bisphosphonate as per Prof Lamy's paper is 24 months. I was quite upset when I realised I had to undertake this lengthy journey after stopping Prolia, but the time has gone quickly. I just wish that I'd taken Fosamax from the beginning as it possibly would have been more efficacious in preventing the rebound fracture I've had. I switched to Fosamax yesterday and, so far, haven't had any noticeable side effects, probably because I've got used to being on a bisphosphonate after 20 months on Actonel. Some people don't appear to have any side effects on these drugs, and you might be one of them if you decide to take Fosamax. I did have several side effects when starting on Actonel, like dizziness, blurred vision, headaches, nausea, plus some digestive upset, but I do seem to have a bad reaction to most drugs. Like you, I'm not prepared to have the Reclast infusion as both the short-term and long-term side effects are apparently more severe.
Yes, why are doctors putting so many patients on Prolia? I think it's the easy option for elderly patients because of compliance issues. They might forget to take their bisphosphonate in tablet form once a week/month and having to remain upright for 30 minutes after taking it could be difficult for those who can't stand up for long. An injection once every six months gets around those issues. Prolia also produces spectacular increases in bone density in most people (but not all), more so than the bisphosphonates. I had an increase of 15% in my hip and 8% in my spine in the two years I was on Prolia (mostly lost now after almost two years off it). It's also seen as the new wonder drug and being heavily promoted by Amgen, from what I understand. However, I don't think that a lot of doctors are thinking through the consequences of some patients not being able to take it due to side effects, as you've experienced, and what they'll then have to do to get off it safely, especially if they can't take bisphosphonates. The more worrying issue is that patients like you who are mostly osteopenic and haven't had any fragility fractures are routinely being prescribed Prolia when, to my understanding, having a fragility fracture and being diagnosed with osteoporosis is the trigger to start on the drugs. Too many doctors are jumping the gun with their osteopenic patients which might partly be due to a lack of knowledge, but I suspect there is a degree on pushing on the part of the drug companies involved. It's a multi-billion dollar industry.
As you're mostly osteopenic, I was surprised that your first endo put you onto Prolia as a first-line drug - and now your new endo says she would have recommended the same. It's not for me to judge, but I'd be wary. For the future, make sure you're as informed as possible as doctors often don't have the time to read up on medical developments and new courses of action, and what is happening in the real world. That is why sites like HealthUnlocked are so good - patients report their personal experiences, and so many people are really well informed because they have a vested interest in their own health. We learn a lot from them. Keep reading and stay informed! Don't be pushed into doing anything that you feel confident is not going to be good for you.
So good luck with making your decision. At least you've got a couple of months to decide. Are you going to see a third doctor?
I was going to go see a third dr. but I did cancel it. When I left the new endo office on Friday and just sat in my car and cried....literally had a breakdown....because I didn't hear what I wanted to hear. I was so hoping to be able to go drug free but since there is a chance of rebound I feel like I have no choice but to go on a rebound drug. Thinking I only had one shot I was so hopeful to hear no more drugs but she is suggesting I do Fosomax. ( I also have read about some patients who had one shot rebounding) So if I do go and see third dr and she tells me the same thing I'm just setting myself up again for a big letdown. I am going for bloodwork in January and we'll see where my numbers are. The second endo told me this is a lifelong battle that we face. Osteoporosis will never go away only we could try to make our bones stronger so we prevent fractures. How are you doing on the Fosomax? Please stay in touch and keep me posted. Stay strong!!
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has anyone lost a tooth or teeth, without being on osteoporosis drugs?
Side affects of Prolia
Alendronic acid, Evacal D3 & teeth
