Hello i think I've posted on here before for the same thing I'm not sure, I have a yearly zoledronic acid infusion had the 2nd one end of August had horrible side effects again but went away, judt these few months later I'm in a lot 9f pain again, upper back, lower back , legs, basically nearly my whole body, I'm struggling to think weather this is down to the infusion because the same happened after the one I had last year ,even some of my bones hurt to put pressure on, I did ring the hospital last year to ask one of the nurses if they think the infusion has caused the pain to increase and they said no but it just seems a coincidence that a few months after both of them the pain has got worse,just wondered if anyone else has had anything like this, hope I haven't just repeated myself from when I posted about this last time ,thanks .
More pain a few months after infusion - Bone Health and O...
More pain a few months after infusion
hi
I don’t personally think it is coincidence as I had exactly the same happen to me.after first infusion I could not lift my head off the pillow with severe neck pain I had never had before.this was 2 days after.i took naproxen,diclofenac,anything I could get my hands on and eventually the pain eased.they assured me it was nothing to do with infusion.so,had another one a year later and exactly the same happened on day 2!This time it did not ease and I had to go to hospital overnight to have steroid injection in my upper spine.I refused the following year,and so now have 6 monthly injection at g.p. of Denosamab,with no side effects.Do not have to travel to Hospital and no probs.Maybe ask if you can change to Denosamab if appropriate.I am 80 ,today actually,and never had a bone fracture,and my dexa scans show no more deterioration ,so,I think all good.let us know how you get on.x
Thank you for replying, my pain gets worse after a few months that's why there saying it's not the infusion but I can't help thinking it is,if it had been a couple of days after like yours they said it could be but not a few months I just don't know ,but I will see into that injection you said but will have to convince them first it is down to the infusion I think, thank you again and hope you have a happy birthday 🎂
Hi my friend who had her infusion early August is experiencing pains the same as you. It was her first infusion. She doesn’t know what to do to ease the pain. How long did it last after your first infusion?
Best wishes for a speedy resolution.
Hello well because I have chronic pain anyway what it did was make it worse, my back ribs legs , I can't really remember how long it lasted but it was quite a few weeks then went back to my normal pain, how long after the infusion did her pain start x
Hi She had her infusion early August and had some pain issues which settled but then last week she really started to suffer with increasing pain and now struggling to cope with it.
Yes so it's a few months like me,I'm not sure what to do about it because the hospital wouldn't have it that it was the infusion but I'm sure it is, all I know is the pain is so much worse than I've had for 3 years .
She is in much the same position as you. Fingers crossed the issues resolve for you both. I suggested my friend ring the ROS nurses to get their advice. I had my first infusion at the end of July. I felt a bit unwell afterwards but the lasting symptom I seem to have is similar to menopausal hot sweats!
Best wishes and hope you feel better soon.
Thank you, yes I rung ros and they said they haven't heard of it but that don't mean it wasn't, don't know how to fund out for sure ,anyway I do hope we both feel better soon and it wears off I doubt I will have anymore infusions ,good luck x
Im a bit late to this, im angry just reading it. I had an infusion end of July and it has absolutely destroyed me. The pain is horrendous i could not even usd my hands it was so bad. Feet, legs, walking difficult. Im still in awful pain. I wish i had been told of this possibility. I hope things have eased for you.
Hello powerwalk so sorry you have suffered the same but glad you have come forward with this, I've only just found a nurse at the royal osteoporosis society who says yes ! The infusion can cause pain and problems a few months after having it FINALY because everyone else I asked said no not that long after you can't get side effects but my pain started exactly 3 months after each infusion, but the nurse also told me there no way of knowing of finding out to prove it's the infusion and it's stuck in your body not like a tablet you can just stop taking it,I'm not having anymore I'm still in a lot of pain now since October it started, can I ask when did your side effects (pain) start straight after the infusion or longer and have you spoken to a doctor or anyone about the infusion and how it's effected you ? Sorry for the questions it's just my doctors don't know anything about the infusion let alone the effects it can have ,I also suffer with stomach problems as well since infusion, I do hope your pain gets a bit easier x
I never felt right after it. I was prepared for a few days of flu like symptoms but as the weeks went on i was eating painkillers and reaching for stronger painkillers. The pain was all over. I dont know when its going to end, if it does!! I havent been given any help because i dont think there is any, until it hopefully improves itself. The rheumy said she had seen it happen but that was it! I did put in a report to the Drugs Admin here (im in Ireland) as i felt so bad about it. I cant believe i walked into this!! Wish there was some way to neutralise it all. Hopefully time will help us. Meanwhile im still taking way more painkillers just trying to block some pain. Its five months now. I hope you too get some relief.
Yes I was quite unwell up to 3 days after having it like they said then exactly 3 months after that the pain started every time, I couldn't understand why my original pain was getting worse than the year before and new pain in places I didn't have ,but there's not a lot to do about it I think I'm turning into a addict with pain killers and so close to Christmas it's really getting me down, but hopefully things will get better🤞but I definitely won't be having no more, I'm going to ask to have the bone scan just to see if the infusion has made any difference to my bones so far then will see x
Yes, im losing sleep trying to figure out where i go from here. I couldnt do another one, i would end up in a wheelchair and thats not exaggerating. I hope you get good results from your scan. Fingers crossed.
Yes me too I've got to get a doctor to believe it is the infusion first but I'm going to leave it to after Christmas now it's just giving me such bad anxiety I would think it's the same for you too, I will report back on here what happens and the outcome is and hope you start to feel better soon x
Hi did your stomach issues improve? I am still struggling with constipation 6 weeks on
Hi there well good and bad days really, have you had infusion?
Yes had first infusion 6 weeks ago. Have ibs and it has set off constipation.
Yeah mines the opposite keep getting bad upset stomach, I've had 2 infusions and my pain amd stomach started 3 months after both of them, I'm not having anymore, just seems too much of a coincidence, have you been to a doctor ? And say your problems started after infusion.
Yes seen gp and seeing a gastro consultant shortly. Have you had constipation with the infusion?
Not as much as the opposite just keep having upset stomach and pain, would like to know how yo get on at your appointment
Thanks yes it will be good to discuss what is going on and possibly have tests. It has been s very difficult time
Yes will be good to hear what they say about it, good luck and hope you don't have to wait too long 😊
I have now been told that is possible that the infusion could have caused my ibs flare up. I have to wait now for it to wear off. It will just take time.
Really, well let's hope it clears up soon, my pain is only just easing a bit since October I really don't think I will have anymore, u will ask my doctor about an alternative, will you carry on with the infusion? Thanks for letting me know x
I have to discuss it again in the Summer. It is so difficult because I need to look after my bones but these ibs symptoms are exhausting.
Yes I know what you mean, I really don't want the next one but will talk to my doctor about it first and see what else I can have , I have heard there's an injection instead every 6 months but god knows what's in that and how that might effect me so I will wait and see, I hope your stomach starts to get better soon x
Thanks. I hope you recover soon too.Its just waiting for it to wear off.
I think the one you are talking about is the one where you have to go on to biophosphates after coming off it otherwise it can cause bone improvement to go backwards. These treatments are so powerful and if you have a delicate system it is really difficult.
Yes I will look into it and ask all about it first ,so much stress with it 😀 thank you will let you know what happens x
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