Infusions of Osteoporosis Medication

[Musicl]

I have had a dexa scan which has shown up Osteoporosis and as I have had difficulties with Alendronic Acid tablets in the past, I think the endocrinologist intends to offer me some kind of infusions. I keep reading on here about reactions to them. Could someone please enlighten me about this treatment?

[Met00]

There's a Zoledronic Acid infusion, which is another bisphosphonate like AA, but which bypasses the digestive system, so can work for people who have side effects from AA linked to their digestion. You have it once a year, usually for 3 years. However, if the side effects are more general, having an infusion may produce the same side effects as AA tablets. There's also Prolia, which is a different drug, given as an injection every 6 months. However, if/when you stop taking Prolia, you have to go straight on to a bisphosphonate to reduce the risk of rebound fractures, so if you can't take bisphosphonates in any form, you'd be a great risk of fracture if you stopped Prolia without a follow-on medication! There are some other options too, see theros.org.uk/information-a...

[Musicl in reply to Met00]

ThanK you so much for he information, I was just worried about the side effects of these drugs.

[Met00 in reply to Musicl]

The info on the ROS website does mention possible side effects, if you click on the links to each medication. It's really hard, isn't it? Most people don't get side effects, but of course nobody can tell in advance who will be susceptible.

[t1gernidster]

You are right to think hard about side effects. I cannot take AA and contacted the ROS regarding alternatives. I was recommended a zolendronate infusion, contacted my GP and was referred to an endocrinologist who agreed it would be suitable. Shortly before it was due to happen I read on here of some of the side effects and put the procedure on hold. As things stand I am taking supplements and calcium in my diet and taking my chances. I may change my mind and go ahead with the infusion at some point but I am far from keen.

[Musicl in reply to t1gernidster]

Thank you for your reply, that's just the way I am feeling. I have had Osteopenia for a long time, and now it's developed into Osteoporosis, which I knew it would. I also have Osteoarthritis. I have been on Calcichew for years, but I am on heart meds so am restricted as to taking supplements. The thing that worries me most is that my mother suffered with Osteoporosis and Osteoarthritis and ended up being really bent over with an S shaped spine. She fractured her femur just from slumping down in a chair. I feel I have no choice but to take these drugs, but I really don't want to, but it will not be any time soon as I have a lot of dental work to be done first.

[Sunseaandsand]

Hi ChristineK,With any medications or treatments there are possible side effects.

What we seem.to forget is that side effects usually go away quickly when the cause is removed.

You say that the covid vaccine caused a reaction for yourself but I am presuming it passed quickly.

There are many people who will pass judgement on medications and treatments even without having tried them for themselves.

I myself do not tolerate medications well and have had side effects from the osteoporosis treatments, some of which were very bad.

I even went back on Ibandronate for a time taking the risks of side effects returning(which they did)

Yet I would never turn away from trying another treatment when offered it.

Why?? Because I am living with the results of 7 spinal fractures and osteoporosis so bad that I now struggle to feed myself.

My advice would be to try the infusion, that is the only way you will find out, this way you can form your own opinion.

These drugs have been tried and tested or years.

The covd vaccines have been rushed through in.weeks yet we take are chances because we know it is the main thing that is going to protect us from a terrible disease that can easily turn to death.

The osteoporosis treatments will not kill us, but multiple fractures do leave us in constant pain,disabled, immobile and dependant on others.

Good luck with what you decide to do.

[Pinklady45 in reply to Sunseaandsand]

So agree, stay strong.❤🌞❤

[Musicl in reply to Sunseaandsand]

Hi, Sunseaandsand,Thank you for your reply. I'm so very sorry to hear of your fractures, you poor thing.

So far, I have never suffered anything like that🙏.

My mother suffered from Osteoporosis and Osteoarthritis though, and I am going down the same route. In later life she fractured very easily, but she never had any spinal fractures, I am going to have to think this through very carefully. I do have a lot of dental work to be carried out, so I can't start any treatment yet.

I wish you luck and hope that things get easier for you soon. Again, thanks for your valued reply. x

x

[t1gernidster in reply to Sunseaandsand]

I respect your opinion but I maintain that we have a responsibility to ourselves to question every medication we are prescribed and to investigate side effects fully before committing ourselves to taking it. I was automatically prescribed Alendronic acid by a nurse during the phone call advising the results of my DEXA scan despite my suffering from stomach lymphoma and from hyperparathyroidism. This could have been catastrophic on 2 counts - the stomach issue is self evident but bone strengthening medication can actually make bones more brittle for parathyroidism sufferers and do no good whatsoever. These drugs are toxins, some of the side effects do not ‘go away quickly’ and people have to live with the consequences of taking them for the rest of their lives. I am certainly not advising against them but I do stress that all possible research should be done first and the risks evaluated.

[Musicl in reply to t1gernidster]

I am learning such a lot since I joined this forum, so many different viewpoints out there, and all very helpful. Thank you for your input.

[Sunseaandsand in reply to t1gernidster]

If you have time please look at my previous posts.This will give you an insight to the many problems and side effects (some of which were serious) that I myself have encountered over the past 17 years of living with osteoporosis.

I notice you were diagnosed 2 years ago and I can sympathise with your situation and am very pleased to hear that you did not have catastrophic results due to the imcompetence of the nurse.

I do understand very well how this would effect you as I was effected by medical negligence ( not osteoporosis related) which although took place years ago has scarred me mentally as well as physically.

I agree that everyone should do their own reasearch but on sites like this one you tend to get mainly negative responses.

As people who have had good experiences do not seek to write about them.

There is much information available about side effets of all drugs, for example look at paracetomol.

However it is much harder to find details of the serious debilitating effects of osteoporosis.

Despite having had some bad experiences I always try to promote a balanced view, ( unlike the anti drug and vaccine lobby that seems to be prevalent today)

[Pinklady45 in reply to Sunseaandsand]

Do so agree about only seeing the bad side of things here. It is a puzzle to work out what is best for oneself,but having seen my Mother struggle and in so much pain with her Osteoporosis I am willing to take maybe a bit more of a pragmatic view with myself as I do not want to end up in the pain she did before her release at the age of 90. Hope the sun shines for you today Sunseaandsand. ❤🌞❤

[Musicl in reply to Pinklady45]

My mother also died in pain just the day before her 90th birthday, she had been on morphine for years and I also don't want to end up like that. It's an awful decision to make about whether to go on one of these medications. I am awaiting replacement of both hips right now, so I have that to think about as well. Thank you for your input and take care. x

[Musicl in reply to Pinklady45]

Sorry, I meant my mother died just before her 91st birthday.

[Musicl in reply to Sunseaandsand]

Thank you for this, I will have a look at your previous posts. x

[t1gernidster in reply to Sunseaandsand]

You have been through some tough times, I am sorry.

Yes, you make a good point when you say that most responses on here are likely to be negative and we should perhaps not put as much store in them as we do but that’s human nature I guess.

I have a review next month with an endocrinologist, face to face no less, and will go with an open mind and lots of questions. Nothing is ruled out.

Thank you for your thoughts. I wish you all the best.

[Musicl in reply to t1gernidster]

You are very lucky, after having bloods checked and then spinal Xrays, I have been told that I will have a telephone appointment with the endocrinologist. I guess it depends on where you live. Good luck.

[LynneH-19]

I couldn’t tolerate AA and stopped taking it after 10 weeks. I was offered the infusion but at the time I was afraid to have it, thinking that if it didn’t agree with me, the drug would be in my system a lot longer than the weekly AA tablet, which you could just stop taking.You need to clarify this point with a medical person you trust.

I wanted some form of ‘proper’ treatment, because I had originally fallen on my butt indoors and broken by coccyx, but was refused a DEXA scan because I was under 50.

A few years later I then fell and broke both wrists, at the same time. I was afraid of following in my Mam and Nana’s footsteps and breaking my hip next.

I’ve been on Strontium Ranelate since 2011 with absolutely no problems, nor anymore broken bones.

Unfortunately it’s not prescribed to patients with a history of cardiac or circulatory problems, due to a slight risk of precipitating another of the above ‘events’.

I’m sorry this reply probably isn’t helpful, but I can only suggest you seek further advice from an unbiased medic, if you can find one!

Good luck

[Musicl in reply to LynneH-19]

Thank you so much for your reply, it's good to gather as much information as possible, I probably do need to seek medical advice. I will have to see what the endocrinologist suggests, I'm g!ad you have found the right drugs, and good luck to you too. x

[Jackietickle]

I too was prescribed AA by my GP who I trust but as usual read through the enclosed leaflet with a fine tooth comb. I spotted that it shouldn’t be taken if you have Barrett’s oesophagus which I do. I phoned the GP and he said “oh I forgot about your barretts!” It was then arranged that I have the infusion ( one a year for 3 years). I was nervous but went ahead. It was very straightforward, they keep a constant check on you throughout just to make sure no problems and it only took about 35-40 minutes. I was “unhooked” and went straight home and had no side effects whatsoever. I had the infusion twice and was due to get the third when COVID arrived so never had it. Not sure what that means in terms of my protection but will find out once we are back in the world.

I know we are all different but as others have said we just need to arm ourselves with all the info and weigh up our options.

Good luck

[Pinklady45 in reply to Jackietickle]

So agree, it is always in the end up to us and our responsibility to find out as much balanced information that we can about anything we do or take. We can only do our best. Stay strong and be happy.❤🌞❤

[Musicl in reply to Jackietickle]

That was very remiss of your GP, but I have the same problem with mine, especially where my heart meds are concerned. I have to ask them to check before prescribing any new drugs and even then they still get it wrong. I always read the leaflets. One GP at my surgery even said that it is not a good idea to read the leaflets! Which infusion did you have? I wish you the best of luck with the infusions and I am glad that they worked for you. x

[Musicl in reply to Jackietickle]

Hi Jackie,I have now heard from the endocrinologist re my infusions, do you mind me asking, which type of infusions you had? They have offered me Zolendronic Acid.

[Jackietickle in reply to Musicl]

Hi Christine

Yes it was zolendronic Acid infusions. Only had two though because of COVID

[Musicl in reply to Jackietickle]

Thank you Jackie