zoledronic acid - stomach pain

[MyStar86]

Has anyone had terrible stomach pains post zoledronic acid infusion? I had mine on Tuesday and my tummy has been so swollen since I’ve barely slept in agony with my stomach all day long. It’s made my bone pain worse and I feel awful so upset I am worried about the tummy as I have massive gastric problems and was told the IV wouldn’t cause any issues gastric wise but why do I feel so bad has anyone else got any advice. How long will this last? Am I stuck like this I’m so scared and haven’t stopped crying. Help

[MollyStark]

I am so sorry to hear this. I'm not on the bisphosphonate infusion but I am likely to by given it at the end if my current treatment and as I suffer from gastric issues, it is a concern of mine. I am sure you will hear from others who have had the infusion but if the pain is severe, you should really call your doctor. I hope you will be feeling well soon.

[Babyr1996]

Hi I’ve had 3 infusions now but not had stomach issues with it. I’m so sorry to hear you are suffering like this. I suggest you telephone your rheumatology nurse if you have one or contact your GP as this doesn’t sound normal to me not that I’m qualified or anything but I would be making phone calls if it were me. All the best

[Sandy33 in reply to Babyr1996]

How have things gone for you with the infusions. I am supposed to start with my first yearly infusion next month. Have you gotten a DEXA scan since you had the infusions? I heard it was your scores would hopefully keep them from getting worse. Has that been your experience?

Thank You!

[Posy-White]

Hello MyStar86

Sorry you are in so much pain, I didn't have such problems but did have the stated side effects -flu like symtoms for 48 hours and minnor eye problem. Like MollyStark & Babyr1996 I would urge you to get help as it is Sunday getting someone could be difficult so if you are still in a really bad way, why not try the 111 service. I had to once re OS medication 24 hour after an injection had blood in my urine -turned out to be something else!

Hope you get some help soon

Best Wishes

Posy White

[Sandy33 in reply to Posy-White]

Hi, can you tell me what the minor eye problem is that you experienced on the yearly infusion? This is definitely one of my concerns. Thank You!

[Posy-White in reply to Sandy33]

Hello SandySorry but I don't know - it was during lockdown so although I was referred to the eye clinic at the hospital no appointment came. Started with sore eyes with the 48hour flu like symptoms used Golden Eye (Chloramphenical) GP said to continue until contacted by consultant.

10 days later called the hospital still problem with left eye –blurred/ disturbed vision in left eye – still sore, minor amount of sticky eye in morning and during the day – like when I had shingles 5 years previously – eyes not focused, left eye to the side. It was the same for next 2-3 months.

Basically it went away altogether after 4 months; if it had continued in both eyes I would have made more fuss about being seen. OS consultant concerned I didn't get to be seen by eye clinic, and because of that was not happy for me to continue with a second infusion 'just incase' it was related to the infusion. I understand you can have minor issues which continue to revisit you after shingles, so it could have been that?

I hope this is of some help? It's a bit difficult to know if it really was connected, but agreed with the OS consultant I wasn't happy to take the risk.

Best Wishes

Posy White

[MyStar86]

Thank you so much, I’m hoping it’s not related if no one else had stomach issues. I think it has flared up my endometriosis for which I am waiting surgery for and that affects the bowel so I’m just very confused. I just know it isn’t right I’ve been doubled over ever since I did get te flu like symptoms and I still ache so much which has made my bad back even worse. So annoying when you do something to help and it makes things worse. I have my rheumatologist on Tuesday so if I can survive till then I can talk to him about it as it might get confused via 111 and I would never get hold of my gp even on Monday I doubt.

I will stayed curled up and hope that it eases because I’m so scared of hospitals I don’t want to go there……last time I was in they dosed me up on way too much morphine and I ended up collapsing breaking all my ribs on both sides which is why o decided to have the infusion after having osteoporosis since 2015 is been putting off the infusion due to my gastric issues.

Thank you all I’m still very confused I just hope it eases once it’s eliminated from my system and can just stay in the bones…….hopefully not causing me more pain than before.

Xx

[Met00]

You should have been given a patient information leaflet when you had the infusion. Here's a link to it: medicines.org.uk/emc/files/.... If you read down the leaflet, you'll see that stomach pain is listed as an uncommon side effect. However, bearing in mind your other health conditions, it could just be coincidence. I would talk to your doctor about it.

[MyStar86 in reply to Met00]

Thank you so much!!! Reading the leaflet it’s the bloody mannitol in the infusion that will of screwed my stomach as I usually can’t take anything that contains mannitol so at least now that makes sense. The specialist didn’t seem too bothered about how bad I have felt since so I will have to speak to my gp but I do think it’s the endo and my gastric problems all coinciding. Trying to keep calm and see that it will help the osteoporosis and hope that this added pain doesn’t continue.

Thank you for the leaflet though as I don’t know why I didn’t get anything from the hospital I was just put on the iv and then sent home after just told about the flu symptoms but that was it!!!

Thank you all xx

[Met00 in reply to MyStar86]

They should have checked with you beforehand that you weren't allergic to or intolerant of any of the ingredients. That's appalling! I hope the effects wear off soon.

[MyStar86 in reply to Met00]

I know I am really upset about it but I can’t do anything now with a yearly infusion. Bit scary but hopefully my body will adjust In time and I will definitely reassess before considering having the second infusion next year!!

Thank you for all your help and support xx

[Mavary]

I took one Alendronic acid and the next day I was violently sick. I was taken off of it and was given injections of teraparatide instead. If you are not coping with it go and see your Dr. There is other things. I’m now on Denosumab injections one every six months. You can only take the terraparatide for two years. None of these upset my stomach.

[MyStar86]

Thank you but I can’t stop this one way the infusion lasts a year so now it’s in my system I will have to suck it up because they can’t remove the infusion once it’s in unfortunately 😭 trying my best. Thank you xx

[jimister]

Hi I've only just seen your post from a year ago. I had a zoledronic acid infusion 5 weeks ago and am having terrible upper abdominal pain. I am prone to this anyway but it is worse since I had the infusion. I am so worried that I am now stuck like this for a year as I won't cope with it. How are you now and how long did it go on for. I can't eat anything with out getting pain.

[MyStar86 in reply to jimister]

how are you getting on as you didn’t reply? Hope you are ok xx

[jimister in reply to MyStar86]

No. Things are much the same. I do suffer with upper abdominal pain a lot but it seems worse since starting on these osteoporosis drugs. I'm sure the consultant would say its nothing to do with the drug even though it is down as a side effect for the iv infusion as well as the oral tablets. But it's in me for a year now. I had problems with Denosumab I persevered for 9 injections so I had no choice but to have another drug to prevent rebound fractures.

[MyStar86]

hello, I’m so sorry you are suffering like I do with the infusion. I can’t remember how long it lasted but put it this way I still have to take anti sickness tablets. I was due my 2nd infusion at the start of November as I’ve had bowel surgery this month so I’m delaying it till January as I know how awful it will make me feel. The sickness and the whole side effects did last me about 6months except the bone pain and flu aspect that was just a few weeks but my guts are not the same and my tummy is bad anyway so it’s hard to tell but I would say 6months but we are all different I do now take 1 metoclopramide a day to help with the sickness and add a lot of finer cordial to drinks when I feel very sick. I hope it eases for you soon let me know how you get on maybe speak to your rheumatologist but they don’t tend to be helpful. If you have bowel issues like me maybe discuss with your gastro xx

[Green_girl]

I was not alerted to possible gastric issues either, despite highlighting my proven and real gastric issues. I think medics are blindsided by the fact that most people are fine on it - and they don't know what to do with the few who do have issues. 10 months on and I'm still trying to re-build my stomach. Go to your GP. If at all possible ask for a gastroscopy - it's the only test which looks inside the stomach.

I find a drink of Slippery Elm Powder is great for coating the stomach and easing the pain, but doesn't do much for any distension quickly - that has to subside on it's own timetable! You can buy it from health food shops, or via the ubiquitous Amazon. Be sure to get pure powder, nothing added. PM me for full instructions on use if needed. I really hope your situation doesn't escalate like mine did. Seek help soon.