Has anyone had sacral ala (pelvic) insufficien... - Bone Health

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Has anyone had sacral ala (pelvic) insufficiency fracture while on Prolia and/or a bisphosphonate?

Arcadia10 profile image

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.

43 Replies

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’ve sent you a PM.

Look after yourself 💐

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.

jozef123 profile image
jozef123 in reply to Arcadia10

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

Can’t see how to put my name on the top. It’s Pam

Arcadia10 profile image
Arcadia10 in reply to jozef123

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?

jozef123 profile image
jozef123 in reply to Arcadia10

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.

Arcadia10 profile image
Arcadia10 in reply to jozef123

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!

Take care

Vicki

jozef123 profile image
jozef123 in reply to Arcadia10

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!

Look after yourself

Pam

Arcadia10 profile image
Arcadia10 in reply to jozef123

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.

All the best

Vicki

Arcadia10 profile image
Arcadia10 in reply to jozef123

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?

jozef123 profile image
jozef123 in reply to Arcadia10

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!

Arcadia10 profile image
Arcadia10 in reply to jozef123

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?

jozef123 profile image
jozef123 in reply to Arcadia10

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!!

Are you getting around ok Vikki?

Arcadia10 profile image
Arcadia10 in reply to jozef123

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!

jozef123 profile image
jozef123 in reply to Arcadia10

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

Pam x

Hi Arcadia 10

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

Arcadia10 profile image
Arcadia10 in reply to fraid

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?

fraid profile image
fraid in reply to Arcadia10

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 😂😂

X

Arcadia10 profile image
Arcadia10 in reply to fraid

Are you taking Vitamin D3, K2 and boron? These are important vitamins which direct the calcium into the bones and away from the heart, arteries, etc.

fraid profile image
fraid in reply to Arcadia10

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

Thank you for your positive thoughts DeannaAlphi.

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 😊

Might be worth asking your physiotherapist about it and see what she/he says.

Will do.

It shouldn’t be a rebound fracture if your on a rebound drug…have you had your bone markers tested to see if your ready to get off rebound drug

Arcadia10 profile image
Arcadia10 in reply to Dmck009

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

Arcadia10 profile image
Arcadia10 in reply to rockinr_56

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)?

Arcadia10 profile image
Arcadia10 in reply to cmoc

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.

Arcadia10 profile image
Arcadia10 in reply to cmoc

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.

Arcadia10 profile image
Arcadia10 in reply to Dmck009

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.

Thanks for your good wishes 😊

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