Nine years ago I had 3 years of Ibandronic acid 3 monthly injections.
Whilst on them I suffered with blood blistering of the soft palette and down the throat.
I also had reoccurring oral thrush. I was also diagnosed with thrush in the gullet.The bone specialist said it was nothing to do with the injections.
I was advised by a consultant dermatologist to stop the injections to see if there were any connection.
On stopping the treatment the symptoms cleared but I still did not connect the oral thrush with the injection.
After 2 years of Forsteo and trying Raloxofine (and 3 fractures later) I had 2 courses of Ibandronic acid and along with other side effects the Oral Thrush returned.
I again stopped the injections had treatment for the oral thrush and have been clear since.
I would be extremely interested to hear if anyone has had either of these two symptoms.
I have noted that Oral Thrush is now listed as a side effect of this treatment.
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Your message is so interesting.Due to osteoporosis I was on Alendronic tabs for 7 years. Result 2 fractured femurs and broken vertebrae. Now just finished 2 years of Teriparatide injections thankfully. No ill effects but a nuisance having to remember every day.
Have a very hoarse voice which is not nice. Could it be the injections or the inhaler for my asthma. I am always interested to hear other people’s opinions.
I had the Teriparatide and felt sick, like I was pregnant all day and had a lot of bone pain. I don't remember being hoarse but it is awhile since I was on it.I have experienced hoarsness and loss of voice on Prolia (I've only had one injection but have decided not to have another due to numerous side effects). I also have an inhaler, had it for years, and it's not made me hoarse.
How did the fractures in the femurs affect you?
Did they happen without trauma?
What treatment will you go on next? I'm just not sure what to do next myself.
I hope you made a good recovery from them.
I only found this forum a few days ago and it is nice to be in contact with others for some support.
The fracture in my left femur was only diagnosed by a new young woman doctor who joined the practice. She sent me to the bone specialist. For two years I had walked in extreme pain and underwent osteopathy, hydrotherapy, reflexology, podiatry etc as I was told the problem was muscular. A year after the operation to pin the first femur, the right one went but this time I recognised the symptoms and was operated on quickly. I would like to say I am pain free and walking easily but that is not the case. My lower back with the vertebrae trouble is a constant ache. I am prescribed painkillers but they on,y make me more sleepy than I already am.
However I am 85 and well looked after in my own home having bought rolators (one for indoors and one for out). a stairlift and numerous grip rails etc put up by my son. Keep smiling.
After reading your reply I can sympathise and relate to your experience with getting the right diagnosis.
When my first fracture occured I was told for 3 months by a gp that it was a muscular problem.
It was diagnosed as a fracture in T11 when I had my dexa scan.
I was also told by the same GP that oh it's not worth the time and expense of sending you for an x ray because if there is a fracture then we can not do anything for it.
When my second fracture occured I saw a lady GP who again told me it was a muscular problem.
I could hardly move at the time and my husband was at the appointment with me.
We ended up arguing with the GP as we were insisting that I be sent for an X ray.
I finally had the form pushed at me to go for the X ray.
Although it was a complete waste of time of which I will enlighten you with as to why further into my reply.
I had got a further 2 fractures in my lower spine.
The 4th fracture that occured in January 2019 resulted in my going to Accident and emergency this fracture is higher in the spine.
I was X rayed and as a result the doctor suspected that there was a new fracture.
He contacted the Radiologist who reported back that there was no fracture it was only wear and tear.
The doctor was not convinced but could not question the Radiologists diagnosis.
After all he was the expert!!!
As a result of this wrong diagnosis I was sent home without any help of any kind whatsoever and an apology from the doctor as he felt that there was a new fracture but was not able to do anything about it.
Unfortunately I have suffered extreme pain with my fractures and the newest one has been the worst I was unable to move even a fraction without being in total agony.
I referred to my X ray being a total waste of time.
I live in the UK and my local hospital have with all four of my fractures failed to pick up on them.
On the occasion I saw the lady doctor I had 2 new fractures that my hospital were that incompetent they could not even see them.
Yet the teaching hospital can see them quite easily and can not understand how they could possibly have been missed.
I have no faith in my local hospital whatsoever and this is not the only situation of which I have been let down by them.
I have to admit I do find things very difficult.The last 3 fractures have had a huge impact on my life and I now fear having the next one.
The last 3 occurred in the space of eighteen months.
I only wish there was some treatment to be had that came without the horrible side effects.
I like you are taking strong medications for the pain.
I am trying to reduce them because I have become tolerant to them and they just sleep me all the time.
The other reason I want to lower them is so that when I have another fracture I will be able to go back up.
I now don't feel quite as sleepy but not without the price of more pain.
Well now I have written chapter and verse I will leave you to get on with your day.
I have been following posts to learn from others, everyone has important stories from which we can all learn. I was sorry to read that you and Gillymar have had such difficult times.
I had 8-fractured vertebra, not picked up on the first X ray and like you the GP seemed convinced it was a minor muscle problem. After two week suggested I should go back to work as he felt it would take my mind of the pain, I went to see a private physio who would not treat me as she was convinced it was not muscle but something more serious and therefore not safe for her to treat me, she wrote to the GP suggesting pain killers, further investigation and sorted me out with crutches as I could barely walk using pole sticks. Two months later I saw a consultant at the local hospital who felt it worth a second X-ray as the first had only been taken a one angle front to back, he said by taking a set of X rays, front to back; back to front and side views was the only way to be sure. 4 fractures of approximately two months old showed up, in order to check and get a full picture I was sent for a CT scan. I had a lot of difficulties having this done was in a lot of pain everyone was very kind and I had as many pillows as possible but 40 minutes lying on my back was horrid BUT well worth it, as a result showed the full extent of the damage. I was referred to a larger teaching hospital as it was thought it might have been possible for me to have spinal surgery. This wasn’t the case, however I researched the Osteoporosis team at the hospital and found they had several Consultants and Specialist Nurses. Armed with this I went back to my GP surgery and have been transferred to this hospital. The first time I saw the Osteoporosis Consultant (a year later) she reviewed all my medication and asked lots of questions about the pain relief, then suggested that the dose of pain relief should be doubled, as it was quite clear from the scan that with 8 badly damaged vertebra I should try to see if this helps. Fantastic help making sleeping at night possible for 3-4 hours then after stretches and repositioning after 30-40 minutes I fall back to sleep. Pain levels dropped from 7-8 out of 10 to 4-5-6 out of 10; I still have pain but it is manageable.
By getting the CT Scan and to a hospital with more experience I was at least able to start to regain some quality of life and I feel confident that I’ll get good medical care. I do feel that GP’s don’t have the experience that’s needed, they are as stated general practitioners, it is not really fair on them nor on their patience’s. I am very grateful we have the NHS but the postcode lottery is very difficult!
It is lovely to hear you have good support from the hospital.
Do you know what your t scores are?
You say you have damage to 8 vertebrae in the thoracic region.
Research says it is possible to have these fractures and not know until they show up when investigating other problems.
Is it possible you already had some of them prior to the new ones and not be aware of them?
I have been in excrtiating pain with each of mine.
I have 2 broken in the lumbar region that I am told is the strongest part of the spine and usually only occurs with trauma such as a car accident.
I am also told because of having fractures in both the upper and lower spine it complicates things in that all the muscles and ligaments have to change to accomadate the change in the shape of the spine.
I now have curvature, as I should imagine you also have and this also brings added pain.
I have osteoarthritis with narrowing of the spinal canal which I have just had diagnosed by an MIR scan this does not help where the pain is concerned.
I do have now a team of nurses helping me with pain relief.
This is difficult for myself owing to now being of a very low body weight I can not increase.
I am told I have been on a massive dose for my weight and coming down off them is not nice as I have withdrawal effects.
I would like to ask how you would describe the pain you have experienced.
My lower fractures effect different parts of my body than my upper ones.
For example with the upper ones I have trouble raising my arms in fact for e months I could not hold my mobile phone.
I now have a very good new GP who understands the seriousness of my condition.
Also I have been told by the practice nurse to try to arrange a plan to be put I to place for when I have another fracture so I can either go directly to the teaching hospital or be transferred there apparently these plans can be made.
It would at the very least take one of my problems away and give me peace of mind.
I notice from one of your posts you have tried Spinomed brace I was also given this earlier in the year but it tends to hurt my back after about 10 minutes and I can't wait to get it off.
I was given a different brace for the lumbar region which I found more comfortable to wear.
The pain in my upper back is a deep burning pain and concerns me that more fractures are going to occur in that region.
Are you on treatment for your Osteoporosis and do you tolerate it well?
Also I wondered if you mind my asking your age as you have implied you are of working age.
I wish you well with everything, today the sun is shining so perhaps our vitamin D levels will receive a bit of a boost!! ××
The support I now have from the teaching hospital has been fantastic.
I'm pretty sure all the fractures I had were as a result of stopping Prolia with out being offered an alternative medication, rebound fractures, the spinal consultant confirmed they all happened at the one time. I used to run a mile in 9 minutes, did daily yoga had a very physical job and enjoyed camping, walking and cycling holidays I went to bed on the 30.10.17 feeling slightly under the weather and woke at 3 in the morning ‘in hell’! I had only had two small previous fractures as a result of a cycle accident. The results having had Prolia where good having gone from the Osteoporosis range to the Osteopenia range when checked with a hip dexta scan; however my spine is not that great this has only been checked post fractures and is defiantly in the Osteoporosis range hence no surgery is possible as the bolts and pins may come loose! I have the results somewhere but as they had some scary negative 3+’s I haven’t dwelt on them….
The Spinimed was very helpful but slipped upwards, I have instead got last week a corset, which I’m getting used to. It’s better than the Spinimed, this was measured and made ‘just for me’ I had to have just fittings it’s beautifully made mainly in white cotton. It is a little no pain no gain I’m learning what I can do and how to manage different situations, it’s a bit heavy with all the metal struts and it rubs under my arms (so I’m working on that!) The big plus is I can hold my arms away from my body and do things like pick up the kettle full of water and pour it into a tea pot with minimum pain. All these small steps are major mountains in the new world I know live in, going out for vitamin D is at least a plus!
How lovely to hear you have a new brace that is helping you to regain some independence.
You have certainly kept very fit and to run a mile in that time is an incredible achievement. I am struggling to accept the changes the last 3 fractures have made to my life.
The one I had in January has resulted in my being almost totally dependent on others.I feel so frustrated with it all. I have been attending a pain management clinic where everyone is lovely and this has been a great help.
Did you have your brace made through the hospital or privately?
The help they are giving you sounds fantastic, do you happen to be from the Southern part of England?
How long did you take Prolia for and for how long were you without further treatment?
If I’m honest I am also really struggling with the lack of independence, the life I had, the things I enjoyed etc. The only way I manage is to focus on ‘today’ and make a mental note at the end of each day on what I’ve achieved, this trick has taken me a long time to perfect as it is only too easy to fall into the what I haven’t gone or what I used to be able to do!
I’ll try and answer your questions, best way of learning from each other. The physio at the hospital referred me for the brace and as that first one helped but slipped upwards and I found it not really suitable to sit in it was suggested to have a spinal corset, I had thought that I might need to pay towards it, like glasses, prescriptions or aids to help at home, but no it was part of the NHS treatment plan for me. After a couple of months if it is really suitable I’ll be offered a second one.
I started Prolia in summer 2012 when we lived in London, we then moved to the South West in 2014 and my then new GP persuaded me that the local hospital had a good reputation for managing Osteoporosis patients!! Oh the wisdom of hindsight, why didn’t I ask to stay with the London hospital? In June 2017 it was planned I had a rest from the Prolia injections, the ‘problems’ all happened 4.5 months later at the end of October 2017. As ‘no one’ knew what was wrong until January / February ’18, I found myself going to a routine review at the Osteoporosis Clinic, my blood results showed some concerns re bone loss, no one noticed I’d lost 4” in height and even though the X-ray was re checked the fractures weren’t seen, I was given the Prolia injection just to be on the safe side and reassured that the problem was highly unlikely to have anything to do with Osteoporosis it was something else. Once the ‘problem’ was found when I had the second X-rays the spinal Consultant asked me if I had ever heard of Osteoporosis???? Said I was already under the hospital team etc.
In June 2018 I started the two-year course of Foresto (Teriparatide), daily injections. Calcium tablets (dose keeps changing with blood test results) Liquid & tablet Vitamins prescribed. (I also have patches to manage the pain). I transferred to the teaching hospital September 2018, I checked the various hospitals within a 20 mile radius and then made further general enquiries through the ROS helpline before choosing. Are you also in the South of England? I found it very easy to pick up through just reading the ROS information which hospitals have an extra interest / research grants etc. in Osteoporosis though I realise that with osteoarthritis you’ll be looking for slightly different things.
Hi Posy-White, it appears that you too like myself and so many others are not listened to during consultations and appointments.
I received a letter recently from Orthopeadics after a scan I had in March this year,it said they were referring me to pain management when if they had listened to me in clinic they would have known that I had been attending for a year already!!!
In 2017 I too was on the patches but they were causing a problem with my bowel (of which I am already on 2 medications for) and also I had some irritation on the skin.
I was taken off them too quickly and had horrible withdrawal effects.
This time I was put on Oxycodone which although is a very powerful medication it is also one you can become tolerant to very quickly, as in my case.
My body weight has now become extremely low and because of this I can not have the higher doses needed to control the pain that I am in.
It is now a case of when I have another fracture rather than if, so given that, I really do need to come down off them or I will not have adequate pain control when I fracture.
It sounds like you tolerate the treatments quite well which is a very good thing.
My husband and I are now questioning are the bone treatments too high for my body weight??
I feel at a total loss what to do next.
I have had fractures after my previous treatments but are told I will certainly fracture if I don't have them.
I get weary with it all.
Was you told it was ok to wear your brace for longer periods of time?
I have had conflicting advice.
The orthopaedic surgeon said only to wear till my fracture healed otherwise it will weaken the back muscles and cause more fractures
The physio told me likewise, yet the ROS said if it eases the pain then wear it.
I live in the Northern part of England and have always been under the same hospital.
I think you have done right to do the research of the hospitals and I sincerely hope they give you good care.
Let me know how you get on and of any news you come across.
Both management of pain and wearing a brace / corset seems very much a minefield! It seems that half of all medical staff are pro and the other half against, Okay so I say it with tongue in cheek.
I have had the spinal corset only for a few days but what I can do is amazing (given how disabled / dependent I had become) Of course if every minute of my day I had the corset on then yes I agree that I would be in danger of loosing muscle BUT having struggled for 20 months no matter what I do I cannot hold my upper arms away from my body, only with a brace can I do it. I would say I wear the corset for about 9 hours a day.
With the pain management before anyone realised just quite how damaged my spine was it never failed to surprise me how hard it was for ‘some’ professional to believe the level of pain I was experiencing. One said ‘people always inflate the pain they feel, you said you had pain at the highest level, what did that feel like?’ I was temped to say ‘Sorry I can no long kick you had enough to explain’, but did shut them up by saying ‘I had thought of the highest level of pain the times when I passed out’. Because I was desperate with the pain when someone told me about a local crystal healer I thought I’d try anything once….. I now go regularly I don’t care if it’s all in the mind but it works for me and a surprising number of other people I have also found they are helped by ‘alterative methods’
Hi Posy-White hope you are still finding new independence from you corset.
Yes I have to agree it would be easier if the professionals were agreeable on the use of the braces and corsets.
I think it's brilliant the help it is giving you and if used sensibly I'm sure it's going to be of huge benefit to you.
I have also found how insensitive some doctors can be.When I had my 2 fractures in 2017 I had a scan and on returning to clinic 2 month later was asked when I walked in on 2 crutches how I was.
When I replied I'm still in tremendous pain he asked WHY? at first I was lost for words then recovered and replied well I suppose its the 2 fractures he turned to me and said oh them they have healed!!
After that he made us wait 3 hours before he saw the consultant to ask what to do.I also can not hold my arms in front of me and for years I have been like this.
For instance I can not lift my own dinner plate.
I have been taking more notice of what heightens the pain as even conning my hair hurts.
Well keep on improving I am thinking of asking about corsets on my next app as the Spinomed hurts and I just can not wear it.
My other brace is for the fractures in my lumbar region.
Are you able to access Hydrotherapy? IF .... the water is warm and deep enough to support this is brilliant exercise.
I can not manage NHS local version as the water was too cool and the sessions between 4-5pm (I am usually too worn out by the afternoon!) I have found a private service, which I go when I can, finance / getting there etc.! The getting dressed/undressed is hard but having the freedom of 'more movment' and gentle exercise worth it.
Hi, I attended sessions at my local hospitals pool, like you I found the water only felt warm when you first got in.This owing to being subjected to a freezing cold shower beforehand!!
It was after I had the 2 lumbar fractures that I attended.
As it was it ended in disaster they pushed me too hard and I ended up being taken to A and E.
Luckily no long permanent damage was done.
I have looked like you for somewhere private but unfortunately the nearest one is miles away.
However there was one that is very close by which I was getting very excited about, until when I looked further into it I discovered it was for the Canine variety!!!
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