zoledronic acid infusion long term side effects

[Radars]

I am due to have zoledronic infusion, I have been reading the long term side effects ,it's enough to put anyone off,has anyone who has had infusions long term suffered with side effects, I have severe osteoporosis-2.5 but at the moment I am only getting occasional back ache and a bit breathless on my daily walk up inclines,any help please.

[t1gernidster]

It’s such a difficult decision. Like you I was due to have an infusion but having read about the side effects I changed my mind and decided it wasn’t worth the risk. I’m sure there are many people who have had no problems whatsoever but all I can recommend is reading as much as possible on here and then making your decision. Good luck.

[Kaarina]

In the end it has to be your choice Radars regardless of other people's help and experiences. However many replies you receive on the pros and cons of this op medication and however much we read up about op drugs in general, we are all different and unfortunately what may well suit some, others will suffer side effects, either short or long term. It is a gamble.

[Valerie0106]

NICE has a patient decision aid which might help you decide about these drugs in your own case. nice.org.uk/guidance/ta464/...

[Radars]

thanks, it is still a hard decision after reading that,people still have fractures even though they have had treatment at the moment I feel ok it's just the thought of having something that will damage me.

[Kaarina]

Most likely, those that are getting on with zolendronic acid will not be on this forum as they will be busy getting on with their lives. So perhaps this should be taken into consideration when reading postings and replies. The problem is you may feel ok at the moment but op is a silent disease and sneaks up on us! We have to be a few steps ahead of it and think perhaps it would be better to go on an op drug to feel ok for longer. As I said before it is a complete gamble to whether it is the best way forward or not depending how it will be for you. Be well.

[Ronnie101]

I, too have resisted bisphosphonates (zolendrate and alendronic acids) for years, despite my rheumatologist frustration, prefering the " natural" remedies of supplements, and weight bearing exercise. My latest dexa scan showed no improvement in my spinal t-score at -3.3, and I've decided to give in. He's convinced me that a future with more spinal fractures, reducing height and bent over in pain outweighs the tiny risk of the major side effects from bone drugs. In fact, he's putting me on Denusomab, because my case is so bad. I've found a reassuring approach is to go to the website Pubmed, and search bisphosphonates or zolendric acid and look at the many meta studies that have been done that show the major side effects are rare.

[Radars in reply to Ronnie101]

thankyou, that has helped me a bit in my decision, we're you getting a bit breathless on inclines.

[Ronnie101 in reply to Radars]

Not especially so, but exercise has definitely become more challenging as I get older!

[walk21 in reply to Radars]

Breathlessness is nothing to do with osteoporosis unless you have had compression fractures already, and you would know, they are mostly very painful

[Radars in reply to walk21]

thanks, strange I have had a echocardiogram and that was ok.i get aches in my back after doing everyday things.

[1ChLoE]

Hi Radars I have had 4 Zoledronic infusions and had bad side effects for over a month each time. I have continued to have spinal fractures even with this medication. I have decided that I am having no more. I can’t have the newer medication as I’ve had a previous TIA. I have decided to try to eat more healthy and am looking into extra supplements. I see my rheumatologist next month and I know she won’t be happy as I have severe osteoporosis, even though my dexa scan aren’t that bad. I am going to ask about the newer scan that is more accurate , (can’t remember the name) I have read up a lot more about the infusion and what I am reading isn’t good. Apparently it builds bone but not strong bone.

[Radars in reply to 1ChLoE]

thanks, just shows why people are puzzled of what to do on here,you read some good stories to put ones mind at rest then comes the bad stories that puts doughts on whether to go ahead with zoledronic acid.

[ChristineK in reply to 1ChLoE]

Do you mean the REMS scan? If so, the NHS does not acknowledge results from this type of scan and it can only be done privately at a cost of around £200. Having said that, it claims to be more accurate than the Dexa.

[1ChLoE in reply to ChristineK]

I do mean the REMS scan thanks. I didn’t realise they were not recognised by the NHS. I live in Spain. What I have read about them they seem more accurate.

[ChristineK in reply to 1ChLoE]

I have not had a REMS scan as yet, but a lot of people who have are finding that they don't have osteoporosis at all, or that the scores are much lower than they were with dexa. I will eventually have one, but waiting on my dexa results first, so that I can make comparisons.

[1ChLoE]

I know it’s all very confusing.

[MWZ3]

-2.5 is not severe. I’d be happy with that! I wish…

[Radars in reply to MWZ3]

not severe ,dxa scan results the lowest t score lies in the osteoporotic range-2.5,the lowest t score is -4.1measured at the lumbar spine, the bmd at the femoral neck is 0.593.we understand 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.

[MWZ3 in reply to Radars]

Also, there’s not supposed to be a big difference between places on the body as they are all our bones. I have the same thing. -5 on lower arm and lowest back score but -2 on hips. I do have a fracture mid back around the waist. I’ve refused the drugs as I just bring myself to take them. Another thing I’ve learnt recently is that the drugs are a bad idea with macular degeneration. I have wet in one eye and dry in the other.

Your decision is yours alone based on your unique situation.

[Radars in reply to MWZ3]

so you don't think that I am severe and taking a gamble with zoledronic acid, I think it is a bigger gamble not having treatment and having spine fractures.

[MWZ3]

You could be right and it’s your choice like it’s mine to not take the drugs. I just don’t like any that are offered. I may regret it, time will tell. I only saw your -2.5 in the first comment which I don’t consider too serious in our seventies. I only noted you had a gap between your scores in your second response which means to question that as bones should be close in measurement according to many comments on here. In my second comment I also said it’s not advisable with macular degeneration which I have.

[Radars in reply to MWZ3]

what you mean by gap in the scores.

[MWZ3 in reply to Radars]

Hips are only osteopenia whilst back is well into osteoporosis range like -2 and -4. That’s too big a difference as they are still our bones wherever they are.

[Radars in reply to MWZ3]

do you have any aches in your back or a bit breathless when walking up inclines.

[MWZ3 in reply to Radars]

I have a lot of issues with my back. Osteoporosis is only one. Osteoarthritis, spondylitis, degenerative disc disease, scoliosis all impact more. I’m not mobile to the degree of walking uphill anyway. I can’t stand in one spot or walk far. I use a wheeled Walker or for distance a wheelchair. So, not putting those drugs into me when they’re probably going to make things worse overall for me.

[Radars in reply to MWZ3]

thanks, I have some osteoarthritis in my right hip had it for a while, in your opinion do you think I would be better off having the zoledronic acid infusion. I also have locally advanced prostate cancer which is under control.

[MWZ3]

I can’t advise you. I just know how I feel. Make sure you do a thorough research and be 100% certain of your decision.

For me, with all that’s going on in my back, doubt the drugs would be worth the risk.

[Radars in reply to MWZ3]

Thanks, I will keep reading how most people get on ,it's not good getting old start falling to bits.

[Nuthatch]

I had 5 (yes, 5) spinal compression fractures when I was diagnosed (entirely due to GP insisting I just had mechanical low back pain). I’ve had teriparatide for 2 years which significantly improved my hip but not my spine scores. I won’t take bisphosphonates, that is my choice. I’ve had no further fractures and now take Raloxifene. Mostly side effect free other than when I need a wee I need a wee! I’m not a medic, I did as much research as possible and my daughter who is a doctor helped me to understand as much as possible. Don’t know if you’re in the UK but I feel osteoporosis is poorly treated and there is insufficient research into new treatments and definitely not enough education around prevention. Sorry, that probably doesn’t help - all I can say is do as much research as possible. Individuals will all have their own different experiences (and opinions) so I find looking at studies more helpful - but I need my daughter to explain them in terms of the cohorts and the methods.

[Radars in reply to Nuthatch]

thanks, yes I am in the uk,the more I read regarding zoledronic acid the more confused I get,when I was talking to a nurse in the ros she said it would be better to have it,then I start reading all the horror stories, did your daughter say not to take bisphosphonate, I have to take the infusion as I have hiatus hernia, plus locally advanced prostate cancer, finished treatment 2016 but my testosterone has not recovered, and the gps won't give me any, it's not good with no testosterone.

[Raleigh59 in reply to Nuthatch]

what is raloxifene?

[Radars in reply to Raleigh59]

I think it's more or less for breast cancer, ask nuthatch.

[Nuthatch in reply to Radars]

no my daughter didn’t say don’t take bisphosphonates, she said it was my choice (like most decent doctors would say); I decided against them for a number of reasons. Not least side effects - I had to stop a BP drug because it gave me horrible heartburn so I doubt I’d cope with an oral bisphosphonate! But also the risk of onj (yes I know it’s supposed to be very rare but I have dental problems which require invasive treatment), and the risk of atypical femoral fracture after long term use - my bone clinic is very hands off so I feel I could be left on them for years.

I think I’m fortunate that the existing fractures haven’t stopped me walking and exercising, though I have more back pain since my 2 years on teriparatide finished. I’m probably not as careful as I should be but I have my life to live and things I need to do, including work which I’m still in part time despite being past state pension age. Gardening is the main thing I really struggle with.

Raloxifene is a selective oestrogen receptor modulator - it is similar to tamoxifen which is used for breast cancer. It was found that Raloxifene has an effect on bone loss and I think it’s mainly used for osteoporosis now.

[Radars in reply to Nuthatch]

thanks, I kept getting messages asking what raloxifene was, you have other health problems so it's best to be careful, I have locally advanced prostate cancer finished treatment 2016 but my testosterone has not recovered I have asked for some testosterone but they said not a good idea, it's not good with no testosterone, I am going to have zoledronic acid infusion because I have a hiatus hernia and won't be able to take oral bisphosphonate, after reading all the different things people say regarding zoledronic acid it's confusing.

[Rovelli]

Previous generations did not have the choice of all these tests and scores and drugs. In some ways they confuse us, perhaps more peace comes from taking our chances, accepting, and doing what we can.

[80s90sSongs]

Check out Naturally Better Bones group - excellent!

[MydogBrandy]

hi, just thought I would let you know I had my first Zoledronic acid infusion this morning. Got up at 5am as i was so nervous and frightened. I started reading all the forums, the best advice I feel I got was to drink loads of water before and after.

I did that drank three bottles of water before, one bottle during and water when I got home.

I feel fine, was just tired but that might have been getting up so early.

Good luck if you haven’t yet decided. By the way my score is -3

Kind regards Ursula