canceling zoledronic acid infusion because of ppi use.

[Radars]

hi,I think I will be canceling my zoledronic acid infusion because of increased fracture with my use of lansoprazole 30mgs and not absorbing calcium with ppi, has anyone safely had a infusion while taking ppis,

[t1gernidster]

I’m certainly not saying you should have it but if your fracture risk has been increased by PPIs is that not a reason why you should go ahead? I don’t follow your thinking here.

[MyStar86 in reply to t1gernidster]

I totally agree 👏!! Radars you have been questioning this infusion for months and talked yourself out of it many times I think you need to make a decision and stick with it.

[Seasid in reply to MyStar86]

And what's about increased atypical fracture risk of the femur with zoledronic acid? Is it also true?

My endocrinologist said that the most important is exercise. I see members here who are claiming that despite being on bone medication their score didn't improve.

I am in similar situation. Low testosterone as a result of ADT.

[Radars in reply to t1gernidster]

what I'm saying is ppis and zoledronic acid infusion together increases fracture risk.

[t1gernidster in reply to Radars]

Is that a proven fact? Isn’t the infusion meant to decrease the fracture risk?

[Radars in reply to t1gernidster]

what seaside has said that people on here despite been on bone medication there numbers did not improve,

[t1gernidster in reply to Radars]

I still think your best option would be to arrange a REMS scan if possible. It might help to put your mind at rest before making any decisions regarding any future treatment. There is quite a discrepancy with your T scores which could indicate inaccuracies with the original DEXA.

[Radars in reply to t1gernidster]

what do you mean, my scores are -2.5 the lowest t score is-4.1measured in the lumbar spine.the bmd at the femoral neck is 0.593.we understand that the patient will has not suffered a previous known insufficiency fracture, however, vfa shows superior end-plate deformity at t12 suspicious for an insufficiency fracture, is that severe osteoporosis, can't understand it really.

[t1gernidster in reply to Radars]

there is quite a discrepancy in your T scores as you have just indicated. This is unusual and has been pointed out to you before.

[Radars in reply to t1gernidster]

what do you mean discrepancy, good or bad.

[t1gernidster in reply to Radars]

There’s quite a difference in them. It’s unusual and might point to inaccuracy in your DEXA. It could be better than you have been advised.

[Rowan7 in reply to Radars]

Hello, your scores should be similar. They are not similar. You don't appear to have been given an explaination for that. Can you book in for a more reliable REMS scan ?

[Radars in reply to Rowan7]

thanks ,when I go for my zoledronic infusion and show them, but they should know on the 25th

[Kaarina in reply to Radars]

I would not rely on the medics on the day of your infusion pointing out to you that there may be an inaccuracy with your DEXA scores. It would appear no medics have mentioned this to you so far (and I am not at all surprised at that)except other members of this forum. REMS scans are much more reliable to my way of thinking and I am no longer interested in having an NHS DEXA. I feel it is my money well spent paying privately for a REMS scan. I am having my second REMS scan later this year, the last one being in 2021. It is already paid for as there is a waiting list where I wish to attend so I booked it in plenty of time so it coincided roughly the same time as my last REMS.

[Radars in reply to Kaarina]

I will have to get in touch with gp or go to the nuffield hospital where I had it done

[Kaarina in reply to Radars]

What do you think the GP will say? I doubt he will know. He referred you more than likely for a DEXA as it is out of his remit that is why you would have been referred. It is all down to how you are positioned when having a DEXA and also how reliable and knowledgeable the radiologist is when going through your results. It is a long training to become a radiologist and there is a shortage of radiologists as there is a shortage for all medics. I trust the REMS 100% more and you get the results and speak with the guy there and then. It is done by ultrasound. The results are also sent to you via email. It costs around £200+. One has to put one's trust in someone in the medical profession! The NHS do not accept the validity of REMS scan yet. I do though and a good few members on here too.

osteoscanuk.com/

[Radars in reply to Kaarina]

what can I do now then will going to the hospital where I had it help,it is a private hospital helping the nhs nuffield hospital.

[Kaarina in reply to Radars]

You can try if you can get an appointment before the 25th or Tuesday before you have the bloodtests. Or arrange a phone appointment. It is all a bit late now perhaps if by now you have not made your mind up. Where did you have the DEXA done privately or on the NHS?

[Radars in reply to Kaarina]

I had it done at a private hospital nuffield they were helping the nhs ,I am going for my blood test on Tuesday prior to the infusion, would it do any good to go to the nuffield hospital and querying my dexa results. or just go ahead and have the infusion.

[Kaarina in reply to Radars]

By all means query your DEXA with the Nuffield. I only hope someone is available to do this for you at such short notice if you decide to do this. Youshould only go ahead with the infusion if you are happy to do so without answers for all the many questions you are suddenly asking us about. We are not medics but we have learned a lot from each other on this forum. We can respond to you saying how WE would deal with certain situations if it was us, but in the end it is your decision and yours alone. It is your body and if you are not happy to go ahead then I suggest you do not. No one can make you do anything. You can cancel the 25th and decide later, when you feel certain/much happier in your own mind which path you are going to take.

[Radars in reply to Kaarina]

thanks, the only problem I have now is the dexa scores,I will see what they say, it's a private hospital so you would think it's OK,I don't understand the dexa scores properly, the nuffield is not far,they will probably baffle me.

[Kaarina in reply to Radars]

if you are lucky enough to get someone to explain them to you at such short notice, even in a private hospital, just make sure that you do not leave baffled. Tell them to talk it through in simple terms. Leave when you do understand. If it is a private hospital can't you call and make an appointment to see the appropriate person. After all you are paying.

[Radars in reply to Kaarina]

I'm not paying the private hospital was helping the nhs. I can walk there in 20mns

[Rowan7 in reply to Radars]

Have you looked at the Osteoscan website to see if there is a Clinic near you to arrange a REMS scan if you can afford it? Yes do contact the hospital that carried out your Dexa to request information on why your scores are dissimilar? Use the patient liaison service PALS to assist you.

[Radars in reply to Rowan7]

I went to a private hospital who were helping the nhs out nuffield private hospital its not far from me,I could go there on Tuesday when I go for my blood test do you think it will do any good

[Rowan7 in reply to Radars]

Yes I do. You are entitled to receive an explanation as to the discrepancy and to understand the reason for that before proceeding with treatment options. As I said previously- Use PALS to assist you if necessary.

[Radars in reply to Rowan7]

I wonder if I phoned the royal osteoporosis society up and tell them what my dexa scores are they will know whats what and advise me.

[Rowan7 in reply to Radars]

You have complex medical needs in addition to osteoporosis and so you should speak to your consultant to receive the decision making information and explaination you need. I wonder why you seem to be avoiding this ?

[Radars in reply to Rowan7]

what do you mean, I have got locally to prostate cancer, I finished treatment in 2016.and my testosterone has not recovered, that is why I have osteoporosis, that's it I get a checkup every 6month,what do you mean I've got medical needs.

[Rowan7 in reply to Radars]

Apology,

You have had complex medical needs.

[Radars in reply to Rowan7]

what do you mean this is about my osteoporosis, what complex medical needs.

[Rowan7 in reply to Radars]

Complex meaning not simply osteoporosis due to natural degeneration as in age.

[Radars in reply to Rowan7]

good bye

[Kaarina in reply to Radars]

Rowan7 has been very helpful in their replies to you.

[Radars in reply to Kaarina]

I have said goodbye to rowan.

[Kaarina in reply to Radars]

I am very aware of what you wrote and I replied that Rowan7 has been kind and helpful to you throughout and we have all been most patient with you. I feel that you have been rude to Rowan and it was not at all necessary.

[Radars in reply to Kaarina]

I have not been rude, she said that I have complex medical needs, I hav not this is about my osteoporosis and nothing else, sorry if she took it the wrong way.

[Kaarina in reply to Radars]

It sounds like you took it the wrong way, Radars. I shall not continue this conversation. Be well.

[Kaarina in reply to Radars]

ROS helpline would be able to help you with your DEXA results. BUT if you have been given incorrect results due to the DEXA not being performed properly or the results not being interpreted correctly then no one can help you with that as that is an unknown. The only way to find out would be to have another DEXA or even better pay for a REMS scan if you can afford it.

[Radars in reply to Kaarina]

I think it's too late now to get a scan before the 25th with all the strikes and long waiting lists. I will read my t scores to the ros nurse and just see what they say.

[t1gernidster in reply to Kaarina]

I completely agree with all you say here. Your story is very similar to mine.

[Mavary in reply to Radars]

hi! My T12 is serious and I’ve got 6 other spinal fractures. I was on Terraparatide which really helped my bone score but you can only have that for two years. I then went on to Denosumab and have been on that for about three years now. I’m also on quite a high dose of Omeprazole which is similar to Lansoprazole. My bone score started at -5.5 for spine and -4.6 for hips. Between Terraparatide and Denosumab I did have another four fractures in the spine. But that’s because I didn’t have it immediately. I haven’t had any more fractures in three years now and am still on Omeprazole. My bone score now is Spine -4.3 and hips -3.4. I now my bone meds are protecting me and I certainly wouldn’t stop the Omeprazole. My stomach is too bad for that. Good luck in whatever you choose to do.

[Radars in reply to Mavary]

thanks, t1gernidster said there is quite a discrepancy in my t scores, I don't know what he means.

[Raleigh59 in reply to Radars]

idk what ppi is

[Radars in reply to Raleigh59]

proton pump inhibitor for acid reflux.

[Raleigh59 in reply to Radars]

Oh thank you so that’s a tablet and a prescription ?

[Radars in reply to Raleigh59]

yeah

[Bluebell999 in reply to Raleigh59]

You can buy it at the chemist but they advise if the acid reflux continues you should see your GP. There are adverts on the TV. Omeprazole, Lanzoprazole, Esomeprazole are just some of the names. You take them before breakfast so they line your tummy, but there may be cautions about timing if you are taking other medication.

They can be very effective but high doses may contribute to osteoporosis as they prevent absorbtion of some vitamins and minerals.

[Raleigh59 in reply to Bluebell999]

I don’t need that medicine at all

[Bluebell999 in reply to Raleigh59]

If you don't need it, don't take it! Unfortunately many people including me have acid reflux, or gastritis, both of which can eat into the lining of your oesophagus, called GERD. Unfortunately I need it so I have to take it.

[Radars in reply to Bluebell999]

same here, I have a hiatus hernia, I have tried to stop but couldn't, I recently had a endoscopy all ok ,been taking ppis for years, I know its not good but have to take them or suffer.

[LM100]

It's not about improving scores as I am not sure whether that is possible but more aboutstabilising them and preventing further deterioration

[Bluebell999]

My infusion is due tomorrow and I still feel anxious about it even though it will be my third time.

Before my first infusion my ppi of omeprazole was reduced from 40mg daily to 20mg. I felt that was a promising start from the doctor in favour of making the infusion more effective.

My first infusion was done quickly over 15 mins and I was extremely ill after.

Naturally I was reluctant to have a second but asked for it to be slowed to 30 mins. I am drinking plenty of water today and will be tomorrow as advised by ROS and will be taking paracetamol during the day.

Last year's infusion was completely different without the worst side effects. Yes, I had some bone ache, head and neck ache and felt a bit like I was recovering from flu. This all lasted less than a week.

To me, the few days of feeling a bit poorly far outways the other treatments of daily injections, tablets, or the rebound effects of Prolia.

I have felt much stronger in my bones, enough to have a recent total hip replacement. I have even gained a couple of cms height, which helps my BMI no end!

I know you are worried, you have posted many times. Please excuse me if I have the wrong end of the stick but now you seem to be grasping at any reason not to have the infusion.

The infusion does not suit everyone, but unless you have it, you will never know. Don't forget it will carry on protecting you for 12 months before you have to consider it again.

I wish you and me a good outcome.

[Raleigh59 in reply to Bluebell999]

what infusion can you get that’s not Prolia

[Bluebell999 in reply to Raleigh59]

It is zolendronic infusion, usually given annually. It is a biphosphonate especially given when oral biphosphonates cannot be tolerated due to digestive problems.

[Raleigh59 in reply to Bluebell999]

what’s it called

[Ludovic4]

There seems to be no straightforward path to follow with osteoporosis does there? I have decided not to take the medication route at the moment as I already take several medications and I am steroid dependent and can not contemplate another raft of side effects. However my endocrinologist said that my daily 30mg of lansoperazole would not make any significant difference to my overall situation regarding my osteoporosis. I wanted to take extra calcium and D3 as everyone who posts here seems to be doing so but he advised me not to as my levels were high enough already.

Good luck with whatever you decide to do.

[Hidden]

I f you want to ring the helpline and speak to an Osteoporosis Specialist Nurse to have the correct info on this Radars please do. 0808 800 0035

[Radars in reply to Hidden]

Thanks I have been taking to a nurse at ros because a couple of people on here said there seems a discrepancy in my scores only trying to help the ros nurse said because of my 4.1 at the lumbar spine it would be better to have zoledronic acid.

[Bluebell999]

I am home, feeling a little under the weather after my infusion yesterday, but otherwise fine. The many litres of water which I had since Saturday and including yesterday seems to have helped. The infusion went well, they timed it for 30 mins.

I am still taking only 20 mg omeprazole and I still struggle a bit with Adcal. It was prescribed two, twice daily, I have one after every meal, with a couple of biscuits with the evening one and that suits me better.

I am drinking a lot of water again today as advised so this should be my last day of worrying about side effects etc. I do have a heavy head, some bone pain, particularly my neck, but I have not been sick, have nausea, incontinent or or otherwise ill. I feel a little tired, which is to be expected but that is it.

I do hope my experience of yesterday and my health today will reassure you.

[Radars in reply to Bluebell999]

yeah thanks I have just been for my blood test prior to my infusion on Tuesday, did you take omeprazole before or after infusion, which vein do they use for infusion.

[Bluebell999]

I did take my omeprazole in the morning before breakfast as usual, but I did not take my Furosumide which is a diuretic. I took my other medications including steroids and hydroxychloroquine for lupus after breakfast. I made sure I took two paracetamol before my infusion, not because I thought it would hurt but to get ahead of any possible pain several hours later.

The preparation for the infusion took longer than the actual drip. I signed a consent form and another health questionnaire. I was swabbed and then the cannula was put into a vein inside my right elbow, (I am left handed) I was given a jug of water and encouraged to drink. I was sitting in a comfortable recliner armchair, checked often to make sure I was feeling okay and the drip was running well over 30 minutes.

When it was finished I was encouraged to sit for a couple of minutes after the drip was taken out, and swab and taped like any blood test, and if I felt fine, I could go. Which I did, after all that water I was desperate for the loo!

It is now 30 hours and the bone pain is lessening, my headache is going, I just feel a bit washed out. Be prepared to make several trips to the loo during the night as you should continue to keep drinking water until bedtime and also if you wake during the night. Make sure you are taking your usual painkillers and other medications at the appropriate times, unless told otherwise.

I know I keep on about the water but it is important that you drink loads and often. I have been drinking several litres today as well as tea and as long as I feel better tomorrow I will go back to normal.

I am booked in for another infusion next year and have been told I will have a "holiday" from it the following year, depending on my DEXA results. That will have been four in total.

[Radars in reply to Bluebell999]

do you have to wear a hospital gown or do you just roll your sleeve up,and do they take your blood pressure.

[Bluebell999 in reply to Radars]

Oh dear @Radars , it sounds like youa are still feeling unsure about your infusion. Please do not worry, it is very simple. You go into a room generally set up with other chairs for other people needing an infusion, perhaps of a different type because they have different conditions. There are men and women having infusions so you do not wear a gown, it is not a medical procedure as such.

Make sure you wear a t.shirt or you can roll up your sleeve ready for the infusion. You are weighed. You do not get undressed except perhaps to take off your jumper, it is a very simple procedure, just relax with a book or take your favourite music. The time goes very quickly. You are looked after well.

Do not worry, it is really simple. Tell the nurse you are anxious and they will do their utmost to make you comfortable.

[Radars]

thanks, I will take my lansoprazole before the infusion, regarding drinking water I generally stop liquids between 6 and 7 because I get up 4×nightly because of my prostate cancer, so with all the extra water I will be up all night, strange place to put a needle in your elbow be better to put it where you have blood tests.

[Bluebell999]

That is where my blood tests are taken, where do you have yours done? It is on the INSIDE of the elbow, where the vein is visible, not on the bone. Sorry if I misled you.

I understand you having to get up several times in the night because of your cancer, which is a right nuisance, but I would really carry on drinking until at least 10pm and start drinking water again as soon as you are awake. The extra disturbance is only for the one night, maybe two if your infusion is late in the day and you are still drinking water, but it could make a real difference.

I wish I had known all about this for my first infusion, it is all helpful information.

My infusion was Monday at 4pm, it is now I.30pm Wednesday and I can truthfully say I have no side effects apart from a little tiredness.

Hopefully you will be the same. Good luck.

[Radars in reply to Bluebell999]

thanks, mines at 4.30,I will just have to keep drinking through the night as I get up to pee.