Bone Health

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Sunseaandsand profile image
22 Replies

I was just wondering how many others like myself, when discussing the side effects that a particular treatment is giving me.

Have heard the words, OH NO What you are experiencing will not be caused by the treatment!!

Then when we reply with, well it's written in the patient information leaflet that it causes these side effects, we get told well they are very rare and what you are describing does not sound like a side effect from the treatment you are on.

We are then given a horror story of what is going to happen if we do not stay on them.

We go away feeling pressured in to taking something we either do not need or want to continue with. Emotional blackmail perhaps.

I for one ALWAYS report any side effects and in the UK where I am from its very easy to do so.

For any of you who have experienced side effects and not reported them to the yellow card scheme then please do so. In doing this we are helping others to possibly avoid what we have had to suffer.If everyone of us took the time to report adverse effects from our medications it would sure result in some of these drugs being withdrawn.This of course goes for all medications.

22 Replies
Met00 profile image

Good for you, reporting side effects. I did the same with Risedronate, but unless others report the same side effects, it won't get noted as being of particular concern, so it's really important we should all report every side effect.

Sunseaandsand profile image
Sunseaandsand in reply to Met00

Great to hear you did that. I'm absolutely sure that if everyone reported the side effects they were having, or had to go through it would make a huge difference.

Who else are they going to collect data from, other than the patients themselves.

The one injection I have had of Prolia has had a terrible effect on my health.

antiP2219 profile image
antiP2219 in reply to Sunseaandsand

And the one and only injection of Prolia destroyed my health for over a year. It's still iffy in terms of muscle spasms, bone pain, and increased neuropathy in feet and shins. Horrible poisonous drug!

Sunseaandsand profile image
Sunseaandsand in reply to antiP2219

Thank you, it is so surprising what comes out of the replies to these posts.

In June I started to have terrible pains in my fee.I could hardly put my weight on them it was so bad. I thought It was because they had been swollen for 2 weeks before and I put it down to the heat. At that same time I had a follow up appointment at pain management clinic, the Sister at the hospital told me it was neuropathy!!!!

This was something I had not even heard of until she said the word.

I wish you all the best and hope you go on to make a full recovery from these horrendous side effects.

antiP2219 profile image
antiP2219 in reply to Sunseaandsand

Thanks for your good wishes. Same back to you! <3

veriterc profile image

report to the yellow card scheme, until one day I couldn't remember the exact sequence of something I had reported, phoned them, and was told I couldn't be told what I had reported because it was confidential! !

Sunseaandsand profile image
Sunseaandsand in reply to veriterc

The importance of this post is to get the message over to report all side effects which you did so well done!! As for the problem you had maybe you could do as I and I'm sure many others do and keep a diary of your symptoms that way you will always know the sequence of your symptoms. After all it helps doctors to make a diagnosis if we are able to give them this information

in reply to veriterc

e-mail is a great way to report anything - it never gets 'lost in the post' and you always have a record of what you have said and when. :-)

Sunseaandsand profile image
Sunseaandsand in reply to

Yes I agree, not sure if you are in the UK I always report to the yellow card by phone they confirm everything by letter and make contact in this way for all further information.

It can be difficult when experiencing bad side effects to feel like reporting, but it's always better late than never.

in reply to Sunseaandsand

good point about better late than never - I had amoxicillin early in the year - it made me so dizzy it was dangerous to rise from seated other than very, very slowly. Luckily I was in bed the first time it happened in the morning after a 10pm dose. The effect continued almost two weeks after I finished the one week course. I have rarely had antibiotics in my life, and then, mostly, amoxycillin. It had never happened on previous courses. It just proves that as our bodies change over time, so may our reaction to chemical substance. I will report it.

Sunseaandsand profile image
Sunseaandsand in reply to

It is good that you are going to report it, just like everything else they are always changing things and adding more things into these medication.

Rather than a change in your body it could quite easily have been a difference in the added ingredients that gave you that awfull experience. When things happen like that it can be frightening, and makes us nervous and anxious when having to take anything else in the future

in reply to Sunseaandsand

I felt guilty that I hadn't done so already. As you say, we'd be feeling quite poorly even to be taking them, and it's not the first thing you want to do in a brief window of respite following an add-on illness...

Sunseaandsand profile image
Sunseaandsand in reply to

Oh don't feel guilty, the important thing is that it's reported, its different for everyone when they do this.

I myself have done it whilst I have been on the treatments and medications, and also when I have felt a bit better.

We have to find ways to get the message over to people how important this is.

That is what I am trying to do raise others awareness, and the response so far has been very good.

Sometimes we just need a little push.

in reply to Sunseaandsand

Agreed - a little push, a little reminder, all very helpful for ourselves and everyone. I like reminders that help me form good habits. Good habits make life easier with less effort than otherwise.

Messyme17 profile image

I so agree with your sentiments. I was also pressured after having taken AA for five years then sustaining fractures but once they were healed I suddenly realised I had less aches and pains than I did when on the AA.!! I've now had a medication break but know I will get pressure again after my DEXA in December.

Sunseaandsand profile image
Sunseaandsand in reply to Messyme17

Hi thanks for responding.If you read through my posts you will find I have had many of the treatments and still sustained 5 vertebral fractures. At the end of this month my 1st and last injection of Prolia will be up.

NO amount of pressurising will have me continuing and it's already started!!

My only fear now is what happens next, will I be safe from any rebound fractures.

My fractures all happened without trauma.

Whilst on this injection amongst many other problems I possibly have a new fracture in my tail bone.

When you get time read through my posts I think you will find the replies interesting.

Wait to hear from you after next scan.

Messyme17 profile image
Messyme17 in reply to Sunseaandsand

Thank you, I will.

DebDenise profile image


Yes I was told it was not a side effect when I first went to my nurse practitioner when I told her I was having thigh & femur discomfort. She said I must have banged my leg & I told her I don’t remember doing that. She told me to come back in a month. The discomfort was worse, pain was shooting to my hip & I was losing my balance which was not like me. I started to do a lot of research on different sites & saw horror stories of people’s legs snapping. I knew this was possible as my moms femur snapped years before on fosamax.

I decided when I was going to see my osteoporosis doctor the following month that I was going off Prolia. My appointment was middle of November & my symptoms had all started mid August. When I told them I wanted off the drug they proceeded to tell me it was a great drug however if I really wanted off it then I would have to go on a bisphosphonate when stopping Prolia. They sent me for xrays & it came back I already had a fracture started in the right leg and issues going on the left leg. I was rushed in for surgery and two weeks later I had a rod from hip to knee to stabilize my leg. They decided to not put me on a bisphosphonate since I was on Actonel for several years & they were not sure if that had also played a role with the atypical fracture. I felt like my world was turned upside down. The fracture was considered a rare occurrence however when I happens to you it is very alarming. They seemed shocked that this had happened & repeatedly said how sorry they were that this was happening to me. I now refuse to go on any osteoporosis medications. I thought at the time I had asked all the right questions before I started Prolia. I was reassured it was a great drug & I needed to be on it. I was told not to be concerned about the side effects as they were rare. I truly feel they are more common than stated. I called Amgen myself when I got home from the hospital & I said I want this documented as I feel your statistics for fractures are probably much higher than what you have posted.

It has been 8 1/2 months since my surgery & I started working out in a gym 4 1/2 months ago on a regular basis. My son who is a nurse wanted me to go off the Actonel about 4 years ago as he felt then it was not helping & felt weight training would help me more. He had said to me even if it didn’t increase my bone density for some unknown reason it would still build muscle to protect my bones. I am now feeling so much better & wish I would have listened to Jesse years ago. I hope to find out in November when I have my bone density that there will be some improvement or at least stabilized.

The doctor wants me to try Forteo which upon doing research I read it caused bone cancer in the rats. I said no thanks as I did not want to be the human test rat. Again I was told about all the positive results people were having.

I pray I will be able to reverse some of the damage to my left leg.

Good luck to everyone else & please stand up for yourself if you have any concerns. I know it’s rare however not fun when the side effects happen to you....

Sunseaandsand profile image

Hi DebDenise, I can relate to what you have and are still mentally going through.

What you have said is an appalling case of negligence. I understand your predicament, I was on Forsteo for the 2years and lost 2years of my life owing to side effects for nothing at the end of it. In fact after 6 months they did a Dexa scan to see how I was responding the results were terrible I had lost a further 14% in the hips, and was told not to worry it sometimes happens at the beginning of treatment or it could be a false reading!!!

I put my faith in the doctors only to find at the end of treatment the hips had not returned to where they were before starting the treatment.The spine had increased slightly.

I then went on to having 2 lumbar fractures, I now have a total of 4 possibly 5 spinal fractures.One goes back to 2012 and they have been vague about it.

I had my 1st and last Prolia injection in February this year, how I wish I had refused I have been so ill my weights plummeted to below 6 stone and I am currently being treated for invasive thrush which I beleive has been caused by Prolia lowering my immunity this happened years ago when I was on ibandronate and again when I was put back on it in 2017. I am worried silly and seeing a counsellor for my anxiety all my fractures have happened without any trauma.

I am frightened of having more fractures after this treatment and being told I must eitherstay on it or go on something else.

Into my 3rd month of this I developed pain in my tailbone I have not been Xrayed but seen 2 doctors who both think it's fractured.

My life has changed completely I can only walk a little around the home and need aids to be able to manage that much.The rest of the time I am in a wheelchair. I have become irritable and angry.Having said that the people I have been in touch with here on Health unlocked has helped so much, I do not feel so alone with all the problems Osteoporosis has brought me.

If you go on and read my posts, you may draw some comfort from others replies I hope so.

Take care and keep in touch.

Nanaedake profile image

If the doctor told me they were not side effects of the treatment then I would what tests could confirm or exclude it then ask them to conduct those tests. This is because I don't want to miss a diagnosis by possibly incorrectly attributing it to side effects.

I have also stopped a drug and resumed it to see if the symptoms abate and vanish. If they restart when resuming a drug that is a reasonable indicator of a side effect.

If side effects are dangerous or diminish quality of life then its worth reporting. Some minor symptoms might be worth living with if the benefits are great enough though. Sometimes it's hard to decide but the ROS nurses are a good help and resource to talk things over.

I agree The Yellow Card system is important to maintain quality of human medicines.

Sunseaandsand profile image
Sunseaandsand in reply to Nanaedake

All side effects should be reported no matter how they effect us.

How else is the correct data going to be collected??

Now imagine how many people there must be around the world who have not reported side effects.

We don't have to imagine the devastating effect this has on giving out true statistics.

Then think about if everyone did report their side effects and how the rare side effects would jump up to become more common.

I note reading through your posts that you too have asked on several occasions about side effects. I am presuming, I believe correctly that you did not report the side effects you were having.

On a final note I don't think there is a GP that exists that would follow orders of a patient to do tests!!

If there is I would love to meet him.

Sunseaandsand profile image

At the end of the day it's up to each individual as to how they manage their side effects.

We all know our own bodies and also how we were before starting a new treatment.

From personal experience I for one have been given many of the treatments for osteoporosis and suffered miserably on them.

In fact when on Bisphosponates it was actually the consultants that told ME the Bisphoosphonates were the cause of my problems, some of which resulted in my having to have biopsies taken from fingers, legs and soft pallette.Yes the ROS nurses are very good and offer excellent advice BUT they are not experiencing our side effects we are. From what you say it appears that you have not been one to suffer side effects from medications as you speak of IF your doctor told you.

Or perhaps you have a very good doctor who agrees that what you are experiare side effects.

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