Zoledronic Acid - rare side effects?

[Green_girl]

I had an infusion on 1 March 2023 in the UK....and immediately had awful muscle pain and stomach issues - including vomiting, nausea, feeling of grit rubbing my stomach wall, severe stomach distension and pain on eating, loss of appetite, change in taste, alternating constipation and diarrhoea. I am now underweight, as I lost over half a stone - and was slightly underweight to begin with.

After a month the consultant allowed a small steroid jab to try to settle the muscle pain which had ramped up hugely. It had some success. The consultant seemed to ignore the stomach issues, although the ROS did say that some people do have issues (very helpful folk). Finally, after being thrown back on the GP (which I didn't take up immediately, due to not thinking a GP could help where a consultant couldn't), he amazingly did believe me, tests ensued - but as none of them looked inside the stomach, all came back normal. 8.5 long, painful months after the infusion I was allowed a gastroscopy which showed a patchy stomach lining and mild gastritis....so what level of stomach damage did I have immediately after the infusion?! I am still trying to re-build my stomach now, 10 months on.

VERY BIG NOTE - Now, before you all take fright and avoid Zoledronate like the plague...I knew I had a really 'dodgy' stomach and could not tolerate some drugs and I told all medics talking to me about osteoporosis about this, proven facts which were fully ignored. So if you have had no previous tummy issues, like probably 99.9% of the population with Osteoporosis, you will be just fine on the drug!! have it. It will help your bones. Lucky, lucky you! Even folk who cannot tolerate Alendronic Acid will benefit from this drug.

The Patient Info Leaflet, which I asked for from the manufacturer, sadly post infusion, shows that stomach issues are a common side effect - but they don't indicate for how long and in what intensity it can be. So if you have any concerns, use this leaflet to talk over you concerns with your medic before treatment. I didn't find any other details like this prior to the infusion - and the British National Formulary sheet which did indicate issues, was pooh-poohed by the consultant.

As I have not, so far, been able to find anyone else in my situation, I would be really interested to hear of anyone who has had similar long-term issues (I suspect and hope that we will be a very small band indeed...).

[jimister]

Hi, I have just received your post. I too had terrible stomach issues after this Infusion, I am prone to stomach problems anyway but this seemed to make it much worse. Everything that went Into my stomach was causing pain it went on for over a year. I was due another infusion last October but I didn't have it. The stomach pain has started to improve now, not fully gone but much better. I feel this drug exacerbates any existing stomach issues that you already have. I don't feel that I want this drug again, but I'm probably putting myself at risk of fractures in the future, but I know I don't want these stomach pains getting worse again. It was a year of hell.

[Green_girl in reply to jimister]

Gosh! I fully sympathise. That's two of us at least...... Lovely to 'meet' you Jimister. We are not alone.

I've had Bisphosphonate 'red flagged' on my medical record, as I don't want it again and all other Osteo' drugs seem to have stomach issues in their 'common' side effects.

Have found a good exercise system to look after balance and core and do a strength and conditioning class at the gym, plus riding and associated heavy work in looking after my horse. I also make sure I do good supplementation and have a bone-friendly diet. Like you I live with the possibility of fractures, but then there are lots of folk who never have a DEXA scan, actually have osteoporosis, but if they never break anything, will never know the risk and probably don't even consider it!

So glad your pain has started to subside - I still have to be very careful what, and how much I eat. Not happy to know that after a year you are still not great. Very odd things will set off the pain/distension again so far for me. I still use Slippery Elm - 'specially if I'm due to try to eat in a restaurant where I don't know if there's anything I can eat without issues. It is very good. I'm also under a great nutritionist who has put me on a special course of pre and pro biotics, plus a 'mucosal' element. I have my fingers crossed........Do PM me if you want to chat any more.....

[Fruitandnutcase]

I have a friend who had similar problems to what you are having after her first infusion. She ended up having extensive tests of all sorts. Some tests were carried out on the NHS other investigations carried out privately.

She was really very poorly and we were all very worried about her - she was unable to eat normally, seemed to live on prescribed protein drinks - she got to a stage where she used to take a change of clothing with her when she went out because of constipation / diarrhoea issues. Even then she could barely walk more than a hundred yards. This went on for a very long time with no definite reason ever being given for her problems.

She didn’t ever seem to connect it with her infusion although it started shortly after she had the infusion and she didn’t have any problems before that. . It was only after I had a horrible experience with alendronic acid that I wondered if that could have been the bisphosphonate infusion that had caused her problems.

However she carried on and had the next two infusions because he has absolute faith in them. She has improved in that she eats a bit more normally, she still doesn’t walk far but she no longer needs to take a change of clothing with her in case of accidents when she goes out but her first infusion must have been five years or so ago and she wasn’t her old self for a very long time.

I felt very ill when I took alendronic acid for four months - not gut problems but all sorts of other things. When I finally met a rheumatologist she tried to persuade me to have an infusion but I said I felt so bad but was able to stop the tablets and I didn’t want to have a whole year’s worth of bisphonate in my system incase I felt that bad again. She actually said she couldn’t guarantee that I wouldn’t feel the same with infusions - which I thought was remarkably honest of her - so I declined her offer.

[Green_girl]

I feel for your friend...I wonder why she carried on when she felt so ill? Even if a consultant has faith in them I would do my own research. Poor lady, ill for all that time - and at a time of life when you don't have loads of years ahead of you in which to catch up with living life! I couldn't have sat under that lots of illness.

Interesting that you had issues other than gut ones. Have you checked them out by looking at the PIL or going online to find reputable sites which may offer info?

It would be great to be able to accept medical help, but sometimes we have to follow our own instincts. Just make sure you do weighted exercise, look after your balance and core, take appropriate levels of bone supplements and watch your diet - oh, and reduce stress, smoking and alcohol!! Sigh. And maybe one day a drug will be found which won't have the possible bad effects of the current lot......another, longer sigh.....

[Fruitandnutcase in reply to Green_girl]

Well, that is the question ! She has no real interest in her numbers or anything to do with her condition and neither does her husband even though he was terribly worried about her and got her organised with a private doctor.

I don’t think it even occurred to them it could be linked to her infusion - it was only later when we were talking about side effects my own husband pointed out how ill she had been that I thought - Yes!

So she had complete faith in her doctors and accepted that they could find nothing’wrong’ with her. When we stayed with them last her husband was complaining that she hadn’t been taking her vitamin D and calcium. She doesn’t appear to take any other vitamins and minerals. She still eats hardly anything and nothing all that healthy - toast/ ice cream etc. she doesn’t get a lot of exercise either. I’ve given up worrying about her. She is perfectly happy doing things her way.

On the other hand they think I’m totally mad for giving up on bisphosphonates and working on diet, exercise and supplements. My issues were bone pain, sinus pain, earache, face pain, blurred vision, I slept all day the day I took the tablet, I was generally totally exhausted, my body ached all over, I certainly didn’t have the oesophageal / gut problems I think are more common. What was awful was that I felt my personality changing, I became really depressed and on our daily Covid walk I was quietly looking to see where I wanted my ashes scattered because I felt as if I was going to die. I had to cling on to my husband to walk.

Once I stopped I went back to how I used to be - thank goodness. I eat a bone friendly diet plus the usual bone building vits and minerals, I do weight bearing exercises, do Pilates for an hour twice a week and walk for an hour most days plus gardening and housework, all the things you have advised. So I’m back to feeling how I was pre-bisphosphonates- thank goodness.

[Green_girl in reply to Fruitandnutcase]

Yes, I know a few folk who implicitly trust their doctors and chemical drugs and don't do anything to help themselves! So glad you are back to normal. Your side effects were utterly awful.

I didn't mention it in my post, as I wanted to major on the stomach issues - but I had massive muscle pain in my body and thought I was going back into Polymyalgia Rheumatica (a painful autoimmune disease). After quite a few emails to the Rheumy Nurse and after trying to live with the pain for a month, the consultant allowed me to have a small steroid jab , which sorted most of the pain. My elbows still cause me issues, but I just have to work through them.

It would be great to have some extra help, but sometimes, if you have other issues, the drugs are not possible for a few. I would have loved to be one of the lucky ones!!

[t1gernidster]

Thanks for this. When I was diagnosed with osteoporosis some years ago I was immediately given a prescription for Alendronic acid despite having a history of severe tummy problems. I also had hyperparathyroidism so it wouldn’t have helped anyway but no one had bothered to check for that at that point. Anyway I refused the AA, the offending parathyroid gland was discovered by a very astute GP and subsequently removed and an infusion was discussed. To this day it scares me how close I came to having that infusion but the number of side effects I read on here finally put me off. Tummy problems were never mentioned though, I wonder what effect it would have had on me? I shudder to think. Sadly we cannot rely on the medical profession to explore our cases in any depth to find out if drugs are unsuitable, we need to do as much research as possible and safeguard ourselves.

I wish you well Green_girl.

[Green_girl in reply to t1gernidster]

Absolutely! We have to look after our own health and be prepared to do research. Sadly the research I did prior to the infusion didn't mention gastric issues, apart from the British National Formulary sheet on the NICE website - but the consultant said the effects were not the same for the infusion (this confused me, as it said for "all bisphosphonates" and didn't single out the infusion as being different....but you trust your consultant.....). After the event I had more key terms to search on and met a pharmacist who said I had every right to contact the drug manufacturer. Result! I have written to the consultant, but had no reply yet (strikes and the parlous state of the NHS generally may be the culprit here).

[Fruitandnutcase in reply to Green_girl]

I was amazed when the rheumy I spoke to and who was trying to persuade me to have an infusion actually admitted that she couldn’t guarantee that I wouldn’t have similar symptoms with an infusion.

She was a visiting locum though as I discovered when I queried not having received a copy of her letter to my GP so perhaps that explained her honesty. Her parting shot was that I could have an infusion any time I wanted and that the nurses who administered the infusions were very good at administering them 🤔🤔🤔

[Green_girl in reply to Fruitandnutcase]

It's such a lottery/gamble. Interesting that the locum was so honest - wish they all were! At the end of the day we are the ones living in our bodies and have to take the decision based on what we know of ourselves, sometimes going against what the medic wants and possibly leaving ourselves with an unresolved issue. But at least if you've had all the info and still go ahead, you then just have to put it down to experience, rather than having all the stress and angst and not being able to get an answer out of anyone when you weren't expecting the side effects and are suffering badly. I know I have osteoporosis and have never taken it lightly - I just do everything in my power not to fall and break something.......which is hard work, sometimes not what I want to do, but at least I can live, rather than just exist with ill health.

[Fruitandnutcase in reply to t1gernidster]

Did your bones improve once you had your parathyroid glands removed?

You are spot on t1gernidster - we need to do as much research as we can for ourselves. Years ago I hadn’t a clue that certain medical conditions and the drugs our doctors prescribed for them could have such a detrimental effect on our bones.

[t1gernidster in reply to Fruitandnutcase]

I have only had the REMS scan since the inaccurate DEXA so it’s impossible to tell. It’s worrying to know that consultants work so independently that they give little or no concern to how the medications they prescribe will interact with our other conditions. In 2017 I was diagnosed with lymphoma of the stomach and was blithely informed by my rheumatologist that Alendronic Acid would do me no harm. It beggars belief!

[Fruitandnutcase in reply to t1gernidster]

It does indeed! They all seem so keen to plug ‘their’ treatment for ‘their’ part of your body regardless of anything else you are being treated for and they seem to treat what they consider to be the most important condition regardless of how that affects other parts of your body - you just get another pill to deal with the side effects.

[FJMG]

Thanks for sharing. I've had two infusions and have dodgy guts but large intestinal problems. I haven't had any trouble with the infusions but will be prepared for next time. The more knowledge we have, the better.

[Green_girl in reply to FJMG]

Apparently the subsequent infusions shouldn't cause the same level of any side effects you have, according to my consultant (but I can't guarantee she's right...). The general info is to drink loads of water before and after the infusion and maybe have paracetamol too. You also need to take it easy for a few days. As you say, knowledge is power!! Every best wish for successful treatment of your osteoporosis - hope the drug works for you!

[Fruitandnutcase in reply to Green_girl]

I think that’s one of the secrets - drink loads of water before, during and after the infusion.

[Mavary]

hi! I only took one Alendronic Acid tablet which I imagine to be the same as Zolendronic. I was violently sick the next day. There was no way I would keep taking those. Luckily I was in hospital at the time so my medication was changed.

[Green_girl in reply to Mavary]

The tablets are more likely to affect people than the infusion, as they go directly through the stomach wall. The infusion is supposed to go past the stomach wall, and hence not cause gastric issues. Sadly a very few folk, Like myself and a few others, do experience issues as somehow some of the drug finds a way into the stomach.

If you have not had long-term, proven, stomach issues before, or had issues with other drugs affecting your stomach, then the infused drug should be fine! It is for the majority of people. If you have any concerns at all get hold of the Patient Information Leaflet (PIL) from the manufacturer of the drug used by your medic. Then you can discuss any issues with the medic as you are fully informed. Hope the drug you are on now is not affecting you?

[Mavary]

I’m fine now. I was changed straight away to Terraparatide for two years then Denosumab. I’ve been fine since being on that. I suffer with my stomach and always have. I had some tablets called Pivmicilinimum and after taking it I thought I was going to have to call an ambulance. I was in total agony. I’ve now told the Dr to put it on my notes I’m never to have it again. But even as a little girl I’ve always suffered with my stomach.

[Green_girl]

Interesting. I've looked at the two drugs you mention - both of them have 'gastric' issues in their common side-effects, which would put me off - but you are fine on them whereas you couldn't tolerate the bisphosphonate (as a tablet - or as an infusion?)? I know Denosumab is a monoclonal antibody, so has a different effect to a bisphosphonate, as it tries to encourage you to grow new bone, rather than just stop bone turnover....but I'm still wary as I'm still not over the effects of the Zoledronate......maybe in a few years I can revisit the issue!

So pleased for you that you have found something that works for you!

[strongmouse]

Sorry to hear about your horrible reaction. I guess most people having an infusion will have had stomach problems when taking the tablet form.

I have had four doses of zolendronic acid and apart from being unwell for 24 - 48 hours feeling fluey and nauseous, I've been fine. I do take omeprozole for reflux, have a hiatus hernia and quite a few allergies. Have you been checked for reflux or food allergies? It could be a combination of effects. I developed an allergy to citrus fruit and developed a duodenal ulcer, which cleared with medication and stopping taking citrus fruit, which also cause me to have a migraine!

It is hard to weigh up the risks and benefits sometimes. My mother suffered from osteoporosis.

[Green_girl in reply to strongmouse]

No reflux or allergies - just a very sensitive stomach that might be a bit leaky, due to age etc. No interest from the consultant in finding out why, or trying to find something to help..... Glad you had only the recognised and short term side effects. For me flu symptoms lasted for two weeks and nausea for longer!!

[Musicl]

This is the very reason I have resisted any form of infusions. Unlike taking tablets, once they are in your system, you can't get rid of them. The endocrinologist doctor has been pushing me to have infusions, but because of all the side effects that they can cause, I refuse to have them. I hope you get some relief soon 🙏

[Calmlake]

Hi I have recently had a zoledrolic acid infusion and I have ibs c. It has made me constipated and i have bloating and griping. It really has upset my stomach. I thought the infusion bypassed the stomach. This is how I felt on the alendrolic acid tablets.How long did it take for you to feel better from this? It would be encouraging to hear from the experience you had. Thank you

[Green_girl in reply to Calmlake]

I understand from others that the side effects get less with subsequent infusions. I was also told by my consultant that the side effects could last up to two weeks or so, so had to just sit tight until the two weeks were well and truly up before I could go back to them to ask for help...so maybe wait a bit and hopefully things will settle. in the meantime don't eat too much at one sitting - just go easy on your tummy/gut. I found Slippery Elm powder very helpful...it's a sort of equivalent of propriety antacids you can get over the counter, but is 'natural'. Drink it in the morning before you eat.

There are other drugs a round, but so research them and make sure you write down all your issues and questions before going back to the consultant. They may not be all that helpful though - they are there to sort your Osteoporosis, and are not experts in how the drugs work. So you may have to weight up your choices yourself.

Just to say my experience could well be very different to yours.....over a year on I am much improved, but still get days when I don't feel very good, and I do still get a swollen tummy after a meal. A few of the tastes which were disrupted are still off - and I never had food issues pre-infusion.

Hope you do feel better in a few weeks and can continue - if you can tolerate the drug it may help your bones long-term!

[Calmlake]

Hì and thank you for your reply. It is very kind.I have been struggling since the infusion with constipation, bloating and some griping but it has not quite got to 2 weeks.

The constipation has been very upsetting as before even with ibs c I was in a regular pattern. From what you have said I take it your constipation and bloating did settle down after a time?

It is difficult with these drugs especially with ibs c with the constipation issue.

I am very concerned about my bones and after not being able to tolerate the alendrolic acid tablets because they caused bloating and constipation I decided to go ahead with the Infusion. I just want to return to my regular bowel pattern. Thank you again for your reply.

[Slotmachine33]

Hello there I have not long posted about exactly the same symptoms but mine didn't start till a few months later the same as my infusion last year ,so because pain didn't start till a few months after I was told it can't be the infusion it just seems strange the same has happened again after the 2nd one .

[Calmlake in reply to Slotmachine33]

Hi did you have ibs symptoms of bloating griping and constipation?

[Slotmachine33 in reply to Calmlake]

Yes I also suffer with gastritis the last couple of years ,I've been to the doctors twice in the last week because of my stomach and said it's ibs,have you had this too with infusion?

[Calmlake in reply to Slotmachine33]

Did things improve over time after your first infusion? This was my first

[Green_girl in reply to Slotmachine33]

My GP kept on saying mine was IBS too - but having had something akin to IBS in the past, I knew it wasn't that, - the issues started as soon as food hit my stomach. In my case, the stomach lining had been badly irritated and I had a patchy lining - this would mean lots of pain because my stomach was so compromised - I had gastritis for just about a year and probably as the gut flora were disturbed I wasn't getting any goodness from what food I could tolerate - and now I have a dodgy stomach even more so than before the infusion! As I have said before, Slippery Elm was a great help with the pain (though did nothing for the gut distension.

[Slotmachine33 in reply to Green_girl]

Hi there that sounds awful I just wish I could find a doctor or someone that would say it could be the infusion ,all I know is my chronic pain is worse 3 months after both infusion they just say if it was the next day or something then it could be but not that long after, but being as the infusion is in your body for a year it could be I think,I've not heard of slippery elm I will look that up ,thank you .

[Calmlake]

Yes the infusion set off my ibs constipation bloating griping. I took the alendrolic acid tablets before and they set it off too but I could stop them. Its only been under 2 weeks but it has been upsetting because my ibs had been calm for a goid while.Just want to get back into regular pattern again with my bowels. When did you have your infusion? Did things improve overtime?

[Slotmachine33 in reply to Calmlake]

Well my stomach problems are on and off the last couple of years but the really bad pain all over eased off in the end after a couple of months just waiting for it to wear off after this infusion which I had 31st of july this is why they won't say it's the infusion because it's been a few months since I had it but it was the same with the first one last year pain got really bad after a few months.

[Calmlake in reply to Slotmachine33]

Thank you. I am glad it wore off for you.I am concerned about my bones so went ahead with the infusion and thought it was supposed to bypass the stomach.

Thank you for your reply and take care

[Slotmachine33 in reply to Calmlake]

Yeah me too thought would be the best thing for my bones ,but I have read about stomach problems before after infusion, your very welcome you take care too and hope things get better x

[Calmlake]

Hi just interested as to how long your constipation lasted after the infusion?I am still constipated 2 weeks on. I do have ibs but this is how the alendrolic acid tablets affected me and now the infusion has.Thanks

[Slotmachine33 in reply to Calmlake]

Sorry only just seen this,well I've just had constipation and the opposite on and off for 2 years since starting the infusion but can never know for sure if that's the cause, but I've finally found a nurse from ros who said yes! The infusion can cause bone pain a few months after but no way to find out for sure I just have to see my GP to talk about an alternative not sure what that would be, getting on for 7 weeks now the pain is just so intense and in places I don't even have chronic pain and it wasn't even this bad last year or the year before it's got to be the infusion.

[Calmlake in reply to Slotmachine33]

How many infusions have you had?

[Slotmachine33 in reply to Calmlake]

2 and both times my pain got worse exactly 3 months after ,it made my original pain worse and also got more pain where I didn't have ot before, so its a bit of a coincidence but couldn't get any answers from anywhere but the last nurse I spoke to last week said yes straight away there's just not a lot I can do about because it's in my system for a year ,don't think I will have the next one.

[Calmlake in reply to Slotmachine33]

It is so difficult when trying to do the best re the bones. I have ibs and the alendrolic acid tablets did the exact same thing re constipation. I was just want to get back to my normal bowel routine. I thought it was supposed to bypass the stomach. Did the Ros nurse say the constipation is a common side effect?

[Slotmachine33 in reply to Calmlake]

Well its supposed to go just straight to your bones but i have read about stomach problems after the infusion online before but they just talk about a couple of days after not months like me,i can't remember if I mentioned my stomach to the nurse but I think of I had she would of agreed she seemed to have a lot of knowledge about long term side effects with the infusion, I just wish I'd never had it in the first place not been the same I was for 2 years health wise.

[Calmlake in reply to Slotmachine33]

Hope things improve for you. Take care

[Slotmachine33 in reply to Calmlake]

Thank you , you too x