Just an update.
My clinic appointment to see consultant and have dexa scan and x-rays has been cancelled. I have been given a telephone appointment instead.
Not sure of the reason for this as the clinic has now reopened although less patients are being seen in a day.
So now I just wait for the call in 2 weeks time.
That’s all you need isn’t it! Very disappointing. Hopefully you will get there in two weeks then.
Thank you, when I spoke to the receptionist she told me the consultant had looked at his list of patients and the ones he thought were to be stable he was not going to see them in clinic, and would do the appointment over the phone.
I would not have thought that 2 new fractures in a space of 9 weeks would put a patient at being stable.
I am looking forward to asking a good few questions on the coming call.
That's so frustrating. I hope the time flies by for you. x
Yes it's very frustrating, it's just another example of how little the clinic has done for me over the many years I have been going.
Of course their main object is to give you a dexa then frighten you into having the treatments.
As soon as you are out the door you are on your own, and as for any side effects well of course it has to be caused by something else because oh no no!! the treatment does not cause those side effects.
I will let you know how the call goes.
I couldn’t agree more with you about ‘frightening you into having treatment’ in my case with alendronic acid. So it was you’re in plaster, in agony from a nasty break, a DEXA scan, lousy results, very scary talk, alendronic or if that doesn’t agree Risedronate and ‘if patient genuinely can’t tolerate that then infusions’ then and we’ll see you in five years.
Not taking their bisphosphonates sounded pretty much like a death sentence.
Good luck with the call - are you still taking the medication?
Thank you for sharing that with me.
I am currently not having any treatment, last year I had the one injection of Prolia that gave me so many problems that I decided I could not possibly have another.
I had been told that if I tolerated it well I would have been on it for the rest of my life.
Given my side effects, and knowing if I were on it for such an extended period of time I would then be at great risk of atypical fractures of the femur plus the higher risk of onj It was an easy decision to make.
I had had my injection in February but was told the effects would last till the end of November (6months later I have had 2 more fractures) I was due to go for an injection of AA in January of this year but had been taken to hospital with chest pains on two occasions, and was told my troponin levels were raised.
Tests were done, and others arranged which have not all been completed as a result of the covid19 situation.
I cancelled my injection of AA because I thought if I had side effects it could complicate things further.
Covid19 has added to the difficulties.
I really do not know what can be acheived by a telephone call, and the way the number of covid cases are climbing makes me wonder when will I ever have the dexa scan and xrays I am needing.
Yes, I know what you mean. I had two wedge compression fractures in 2004 T4 & T5 in between my shoulder blades which was due to a high impact fall. They found out that I had osteoporosis from the Xrays but the fractures were not down to the fall. I was still told I would have to go on to bisphosphonates and was given Pamidronate three monthly intravenous infusions and one of Zolendronic Acid over eight years. I was terrified all that time as my hair was thinning and I had and still have a fear of dental extractions. I stopped it all eight years ago but if I knew then what I know now, I would never have agreed to any of it. I would have made changes to my diet and tried to combat it in that way. I had some horrible side effects including my hair thinning and also, no-one told me that bisphosphonates rob bone from one area and lay it down in another. After having the one ZA infusion and then having a DEXA scan some time later, I was told that I had osteoporosis in my femur neck. Prior to that the only place I had osteoporosis according to my consultant, was in my lumbar spine.
I am really sorry to hear you had such a fall it must have been a very traumatic experience for you.
Actually in 2004 I was put on 3 monthly injections of Ibandronate I had terrible side effects and hair loss and thinning was one of them.
The most serious were blood blistering of the soft palate and down the throat.
Trips to hospital, A &E and numerous biopsies were taken from my soft palate, and finally it was suggested that the Ibandronate was the cause.
The consultants who were giving me this treatment insisted that was not the case but a leading dermatologist wanted me off the treatment.
It was finally agreed that I would be taken off it. The blistering in the throat and palate ceased to happen (it always occured worse in the few days after the injection.)
I still had blood blistering in the fingers for a number of years proving that bisphosponates can leak out of the bones for years.
The list of problems I had on that treatment was a very long one. The worst thing about it was the bone consultants telling me the Bisphosponates were not causing those side effects.
At one time I felt I was going crazy because of it.
Then in 2017 I had 2 more fractures a month apart, in May and June I was becoming more and more disabled and was so frightened after being told my whole back could go, that I agreed to have Ibandronate injections again.
I must have not been in my right mind to agree to such a thing.
One was given in August and the second in the November.
ALL the side effects reapeared and I refused to have any more injections.
What really surprised me was the fact that whilst having the ibandronate I had medical issues that even I had not linked to the bisphosponates. Yet once I began treatment again these long gone problems started up again.
Not a coincidence, definitely the Ibandronate.
I have realized one thing over the long years of treatment with the bone medications, and that is they ALL cause horrible side effects and the worrying thing is, we as patients don't always know it because our symtoms are blamed on other things.
I as so do many others share your fear of tooth extraction.
I was told by a maxi oral facial surgeon who I was seeing whilst on the ibandronate not to take it as it causes huge problems for them, his words to myself and my husband was Where can we take good bone from to rebuild a patients jaw??
Good question. More recentley I was told only have the absolute minimum of work keep having a tooth refilled as long as you can.
As for AA the more I hear the less I like the sound of it.
Take care and thank you so much for reply and allowing me to let of a little steam.
My problem is they can't refill mine as the gum has receded badly there and bleeds from time to time even though there is no infection and I have bad sensitivity there too. I am really worried about it. I hope things work out well for you. All the best. x
Yes, it is a worry and with something like that it is hard to get it off your mind.
One of my double teeth has a big old filling in it. A couple of years ago it broke right off on the inner side my dentist wanted to start mesding about with caps and root canal treatment ect. I declined immediately and asked for a filling to be put on. She agreed and said it was temporary, she actually did a good job because it ladted up until 2 months ago when came off.
I am left with only a tiny bit of tooth on one side and nothing on the other with an old filling stuck to the remainding bit of tooth it has quite a sharp piece on it.
I have to admit I broke out in a sweat and panicked because of being on Bisphosponates and also prolia.
I called the dentist and he calmed me down as I was so worried not knowing if it was ok to even clean it!!
We decided in the end to leave it for now owing to Covid-19 situation .
He did not want me to leave it more than 3 months though.
I do have it on my mind each day as it is sharp and a constant reminder it is there.
I am sure you are doing everything you can to avoid any infection as am I. I find that duraphat toothpaste is very good for sensitive gums and teeth.
Take care and please stay in touch.
Shocking. What good is a telephone call? Honestly, I think a lot of these doctors and consultants have been twiddling their thumbs these past few months, making a few phone calls and ticking us off a list. I hope you can get everything rescheduled asap.
I feel for you, I had a VC from Rheumatologist then left with information about last chance treatment emailed, & being told that if I break anything again then I'll be critical what happened to being proactive about health rather than reactive, dexa scan was cancelled too, another has come through so keeping my fingers crossed as until I know the results I'm not keen to start further treatment (which will be be the last I can have, glad of ROS helpline that explained the treatment to me)so I'm in limbo at the moment. Take care and I hope you get appointment soon.
Hi Charlie50,
Sounds like you are in a similar position to myself.
I hope you get your dexa scan as arranged, yes I too want to know exactly where my new fractures are and what is going on with my bones, I have also requested an mri as soon as is possible as I suspect there is now more nerve impingment, how long will I have to wait for that I wonder, and how many more fractures I may have whilst waiting.
Well how long is a piece of string??
I believe these tests are extremely important to us, it is not just about getting us onto treatments.
You mention that your next treatment will be your last, why is that?
How many fractures do you have and why do they say you will end up critical if you fracture again?
To be told these things by email is terrible, talk about putting the frighteners on us.
On one occasion when a consultant was trying to push me to have bone treatment she pointed to my spine on the dexa scan and said well how you going to feel when this lot goes.
Needless to say I went ahead that very morning and had the treatment, and ended up with months of terrible side effects and more fractures into the bargain.
I really hope things are resolved for you very soon.
Take care.
The tests are as for me going to help me decide my next step or if I can defer for a couple of years, I'm in my late 50s I'm unable to tolerate tablets or Infusions (really bad reaction) I've been offered parathyroid hormone treatment for 18mths then a course of prolia for limited time. With the potential side effects and I'm not great with medication this is something I need like others do to have update on bone condition prior to treatment. So I entirely agree with you we need monitoring through tests to give us some baseline & at times confidence in treatment whatever treatment it is.
Keep taking care...
Oh no, what a blow. How can they possibly do a full assessment without a DEXA scan? Even if they've decided, on the basis of recent fractures, that you're definitely at high risk of further fracture, you still need a DEXA scan to give a baseline before any treatment starts.
Yes there is so much I need to know, because of all the delays and no further treatment it is most probable that my bone density will have taken another dive.
I just can not see what good a phone call is going to do me. I am not agreeing to any further treatment till I know exactly what is going on in my spine and pelvic area.
I had my appointment cancelled back in November last year for My appointment this Year in June
I finished forteo in May after 18 months
I have 3 fractures and 2 compression fractures which I had kyphoplasty on
I was being pushed into taking prolia next but I said I wanted to know my other options first
I was told I was going to have a telephone appointment which I never got
Tried ringing to sort this out but ended up getting no where
So thank god I never did start prolia as if it hadn’t agreed with me or when my next 6 months prolia Injection was due would I be able to get a appointment
My GP is no help
I agree, it sounds like a good thing you didn’t start on Prolia. What did it feel like having kyphoplasty? Did it work? I’ve only just heard of it.
Hi
I had 5 done at the same time as I was in a lot of pain with the fractures anyway fo me it was the right thing
I had to stay in hospital over night which I hated but once home I was a back at home I felt better
Yes it was painful recovery but only needed to take painkillers for a couple of days
I haven’t lost any height which I am grateful for
I have definitely put weight on taking forteo especially around my middle area lol
But I am glad I had kyphoplasty
Take care
Thank you for that Nemone that is really interesting. I wonder if many people have it done, funnily enough I only read about it yesterday then along you come and you’ve had it done. So glad it all worked out for you. Are you in the U.K.?
Yes I am in the uk
I am not sure how many people have kyphoplasty on the day of my procedure another older lady was having kyphoplasty on one of her fractures but because her other fractures in her spine had already healed they couldn’t have kyphoplasty on them
I think I was very lucky as I hadn’t heard about kyphoplasty before
I didn’t know I had osteoporosis I was helping lifting a washing machine and the other person let go of it so I took all of the weight
I was in so much pain I went to doctors who told me it was muscular and would only give me pain killers
I was still in so much pain weeks later but my doctor still would not let me have X-ray on my back
Instead sent me to physio omg big mistake he made me bend touch my toes etc I had to lay on couch and he pressed all along my spine I ended up in tears and still got told it was muscular
I had two physio appointment couldn’t take anymore and still couldn’t get mri or X-ray
So we payed to go private to see a consultant he was brilliant arranged a mri which I had to pay for
That’s when I found out I had these fractures in my spine
The consultant wrote a letter to my GP to say how could I have been left so long without a mri
My GP then referred me then for dexa scan
I was lucky as my consultant was going all over the world training up other doctors in the produce of kyphoplasty
The consultant explained the procedure to me and referred me back on the NHS So he could do the kyphoplasty he didn’t see why I should have to pay private Thank god
It’s been 2 years since kyphoplasty surgery and I do think it’s worked for me
So I am hoping that it stays the way only time will tell but it has given me my life back for now
You poor soul, what an nightmare experience. Bending forward like that is about the worst thing you can do and then to pound your spine! Thank goodness you found the consultant you did, he sounds wonderful. Best wishes for the future.
Thank you Let’s hope my rheumatologist is more understanding when I eventually get my appointment
Best wishes hope everything works out for you stay strong
I am so happy to hear of something positive in that the surgery has worked well for you.
It does help to get better results if we pay private and if already under the NHS then it is possible to have procedures done on the NHS.
I sympathise with the problems you had getting there though.
I too was told by a gp my fracture was a muscular problem and it was not till 3 months later I had a dexa that confirmed the fracture.
When I had 2 more fractures the same thing happened again, it was a lady gp who was insisting I had muscular problems even though I had already had 1 fracture.
I haf to insist on having an xray done, when the results came back they told me I did not having any new fractures!!
Again this was confirmed by having a dexa scan.
When these fractures occured I would have probably been a candidate for surgery by kyphoplasty but as I understand time is an important factor and the procedure is best carried out within 2 months of the fracture taking place.
Once the fracture has healed it can not be carried out.
For me now it is too late as I have previously said by bones are too weak to withstand the procedures.
Good with your next appointment.
Take care x
It’s a shame that nobody takes us seriously when we go to our go I appreciate mri are expensive but if you were able to have one sooner then in the long term perhaps we wouldn’t need to require so many appointments at hospitals plus those horrible meds for osteoporosis plus pain killers etc
I know it’s not the answer for everyone and I am not sure what the future holds
but I do feel we are left to get on with it until we require more help etc as in time I guess the next step could be wheel chair etc
I do feel for you and hope your not in to much pain
Stay strong
Hi, You certainly had a lucky escape from the Prolia, what a relief that must be for you.
All the appointments being cancelled cause such frustration, and having to chase things up ourselves on the phone is exhausting I know exactly what you mean.
Forsteo is usually a 2 year course, and can not be repeated in anyones lifetime. I am surprised you only received it for 18 months.
I would be very interested to hear about the kyphoplasty you have had done.
You do not need to reply to both myself and Fruit and nutcase as I will be able to see your reply.
I was told several years ago that I would not be a candidate for either that or Vertebroplasty owing to my bone density being so low, they said It would be a risk as the vertebrae either side of the fractures could also fracture.
It is too late for me to have any treatment like that now which really saddens me.
I have found that the GPs can not help because once we are under the hospital they believe we are being well looked after.
How very wrong they are!!
Hello Sunseaandsand
Only just back on line so sorry to read about you phone appointment instead of scan and face-to face. I'll have my fingers crossed that in two week and the phone appointmet you'll be able to get something more suitable sorted.
Best Wishes
Posy White
Hello Posy White,
I hope you are keeping well.
Thank you for your message, I too hope I will be able to get something sorted out quickly.
Take care.
Advice needed re good bone unit
missed you guys. prolia new boxed warning for kidneys jan 2024
