IV infusion: Hi all, well I’ve been on... - Bone Health

Bone Health

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IV infusion

Madmax100 profile image
Madmax100

Hi all, well I’ve been on Alendronic Acid for osteoporosis for 4 months now and overall have tolerated it well with the odd few side effects, the most annoying being itchy skin but not half as bad as I thought it would be.

However, my consultant has recently informed me that it’s not being absorbed as well as she’d like and I now have to have the IV infusion annually (zolendronic acid). I’m a little worried about it and wondered what people’s experience of it is? Thanks

18 Replies

I'm intrigued to know how your consultant knows that it isn't being absorbed well? I thought the only way they could tell is by a DEXA scan in a couple of years' time? Is there another test that shows this?

Hi

I had a blood test which determines whether the meds are working - she told me something like 40% of people have no effect from AA

Met00 profile image
Met00 in reply to Madmax100

Wow, that's really useful to know. I didn't have one when I took risedronate, and haven't heard of this before. Are you in the UK?

Madmax100 profile image
Madmax100 in reply to Met00

Yes I’m in the UK, I’d never heard of it either!

That sounds quite weird - how can she tell especially after such a short time and without another DEXA scan?

I also thought you only had the annual infusion if you has gut problems.

Hi

I had a blood test today that shows how well it is absorbed. Also I have coeliac disease so that’s maybe why

Could very likely be something to do with that. Wonder what the blood test measured? Still sounds unusual or maybe someone else will pop up and say they’ve had that done too.

I think it measures absorption rates in the bloodstream - my figure was 47 and it should be about 35 apparently that indicates it’s working. I can’t remember what the measurements were though

Sounds interesting. I’ve got a friend who has annual infusions of AA - she has gut problems. She says it doesn’t take long and she seems f8ne with it. Good luck with it all.

Oh that’s good 😌 thank you so much

I wonder if your consultant was measuring your bone turnover? That is an instantaneous way of telling whether OP drugs are doing their job. I am on Actonel (risedronate) to get off Prolia without risking multiple vertebral fractures, and have the bone turnover tests done every few months to see what is happening. If your numbers go up steadily, then the bisphosphonate is not keeping the turnover under control - and that's its aim. The DEXA scan shows the end result.

There are two tests to measure bone turnover. One is a serum (blood) CTx test, and the other is an NTx test (urine). Your numbers appear to indicate that your consultant is using the urine test if this is indeed the test you're having. In post-menopausal women, the NTx should ideally be below 50 and CTx should be below 800. Are you submitting a urine sample at the same time as your blood sample? Perhaps your consultant is using the urine sample to measure bone turnover, not the blood sample.

I live in Australia and have been having a full metabolic bone study done annually just before my DEXA since I was diagnosed with OP in 2012. This routinely tested the NTx , but when I needed to have more frequent tests done post-Prolia, my consultant switched me to the CTx as it's more accurate, apparently, and the gold standard in most countries.

I don’t want to put you off but please do your research into the zolendronate infusion before you agree to having it. Your endocrinologist should flag up the risks but they tend to ‘overlook’ these. If you search back my posts you will see I asked on here re side effects and received some informative replies.

Also please ensure that you have had a test to make sure your parathyroid gland is working correctly and isn’t causing your continued bone loss. A simple blood test showing raised calcium levels in the blood stream can indicate this. If you do suffer from hyperparathyroidism then no medication will stop the deterioration in your bones until you have the appropriate surgery. It’s a common cause of osteoporosis and often overlooked.

I had my first zoledronate infusion on Friday. It took about 40 minutes to drip in via a canula on the back of my right hand. Over the weekend I had a mild headache and slight temperature. Nothing more than that. The plan is for me to have the infusion each year for 5 years. In the consultation I had prior to the infusion I was told that very little of the oral medications is absorbed, most is excreted straight out. I was told that the infusion should half my risk of further fractures, and after 3 spinal fractures over 3 years I'm happy to take that. I held off long enough but now I'm glad I've taken the plunge. Time will tell.

Hi,If you have been tolerating AA without any real problems that put's you in a much better place for trying the infusion.

It's a very personal choice and some will have side effects from the treatments ( myself included) but on the other side of the coin fractures can lead to permanent disability.

People who have tried the treatments and had side effects but never experienced what a spinal fracture is like are going to be the ones to be telling you to stay clear.

If I could turn back time I would have listened more to my specialist and not had drug holidays in between treatments.

I agree with Arcadia 10's reply, I have always had blood tests done on each visit to the Clinic ( for the past

As I understand it, the way it works is that bisphosponates slow down the cells that break down old bone but allow the cells that build bone to continue, thus giving an overall increase in bone density.

The blood test monitor's the amount of bone that is being broken down, thus indicating how well the treatments are working.

Good luck for the future.

Hi Sunseaandsand, I am tolerating AA well, but I am still waiting for a DEXA scan to determine whether I have osteoporosis. I was at low risk for my age last time I had one but last year I got three spinal compression fractures, adding to the one I already had without knowing it was a fracture. Apart from the excruciating pain of the fractures, what permanent disability could arise from not taking AA? I had to put up with the pain for six months before they gave me an MRI scan.

Hi MaggieSylvie,As you will be aware the central nervous system runs through the spine.

Spinal fractures can for some people have serious implications.

Not just pain.

Incontinence,mobility issues, breathing problems and problems with the internal organs, and in the worst case even paralysis.

The list is endless.

If you have 4 spinal fratures yourself then you will know all about the loss of height and the change in the shape of the spine resulting in kyphosis, and of course the bulging stomach.

My fractures have all happened spontaneously, going to bed ok and waking up in the early hours and not being able to move or even speak cry or sniff that is one example of what these fractures do.

More and more people are joining health unlocked feeling scared about the treatment, only to have other members adding to their fears, with words like Evil and Horrible drugs!!

THE most upsetting thing about this is that in most cases the ones who are labelling all the treatments as nasty and evil are the ones who have never tried them for themselves.

Perhaps the message we should be giving to the newcomers on this site would be to at least give the treatments a good try before ruling them out.

We should be reassuring people not pushing them into treatments but certainly not frightening them off them.

Oh gosh! I know I've lost two inches and I am still having some mobility problems but I didn't realise that my bulging, heavy stomach was the result of the fractures, (apart from the prolonged sitting down) nor the strange (as in unaccustomed) feeling when I pass water. I have blood cancer so when I am asked about my symptoms I don't know what to say as usually if I mention a symptom I'm told it's not related. I appear out of breath after activity and it could be caused by my haemoglobin being insufficient. But from what you say, it might be the fractures. I am due to talk to my haematologist on Thursday but I'm not due to see anyone about my back. Thank you for educating me. I agree that people should give medications a chance and not discourage others from taking them. We are not all the same but we should all give meds a chance until we are sure they aren't helping.

I was told I had osteopenia in the lumbar spine but even if they had said I had osteoporosis I wouldn't have started any of those hard core drugs. I believe it's all a big scam by Big Pharma and a travesty against women. I did my own research online and now know about the complexity of bone chemistry and have taken responsibility for my own bone health at the age of 65. It's a lifelong journey and isn't just about density but about quality and strength. I am changing my diet and do targeted exercises. There is a wealth of research out there. I don't believe everything doctors tell me. There is so much out there to help yourself and a massive gap in the NHS for people who don't want to rely on drugs and suffer side effects, leading to more drugs.

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