Pain after infusion

[Slotmachine33]

Hello I had zoledronic acid infusion on the 2nd of August and around 3 or 4 weeks after I started getting more pain and pain I already had got worse and still have it, I rung ros to ask of it could be the infusion but because it started a few weeks after the infusion they didn't think so but just seems my pain has got worse since , just wanted to know has this happened to anyone else ? Pain a few weeks after having infusion and not straight away, thanks.

[Fruitandnutcase]

What type of pain are you having and widespread is it?

[Slotmachine33 in reply to Fruitandnutcase]

Hi and thanks for reply, it's changes sometimes my ribs feel very sore then it will be sharp and also feels like I have actually hurt them by cracking one or something and sometimes shooting pains, it's very strange and also the tops of legs are painful when I wake up in the mornings especially if I've been laying on my side then that thigh will hurt too but all started a few weeks after infusion just wondered if it could be that , already had upper and lower back pain through trauma and arthritis and that's got worse since as well.

[Fruitandnutcase in reply to Slotmachine33]

It does sound like it all originates from your infusion doesn’t it.

I took alendronic acid for four months and it was that sort of pain that made me give it up - I developed a pain in my hip that hadn’t been there before and I found that really worrying, I had repeated bouts of sinus pain, my teeth hurt, my mouth hurt, the glands in my neck hurt, my ears hurt, my vision was poor, my bones and muscles hurt and I was exhausted. I just felt a wreck and basically the only side effect I didn’t have was problems with my gut - which I was half expecting.

I spoke to a rheumatologist quite a while after I had stopped and she tried to persuade me to have an infusion but she had the grace to say that although it was unlikely she couldn’t guarantee that I wouldn’t have the same side effects. So it looks like side effects could be possible even if not right away.

Hopefully things will wear off and you will feel a lot better soon. Have you tried increasing your water intake? That might help.

[Slotmachine33 in reply to Fruitandnutcase]

Well it seems like it did your symptoms start a while after infusion too ? God you had a lot to deal with no wonder you stopped it that must of been awful so much pain, i feel exhausted as well wasn't sure if the pain was doing it or what all I know is I feel terrible , felt like this about 6 weeks now and just hope it wears off did yours get better ? Yes I drink a lot of water but I suppose I should ask a doctor but nothing saying they will know either for sure , I hope your better now and thank you , in a way I hope it is the infusion at least I know it will get better well I hope it does .

[Fruitandnutcase in reply to Slotmachine33]

No, I was taking a weekly tablet. The day I took it I used take it, go for a walk round town, come back and have breakfast then fall asleep and sleep for the rest of the day then the bone pain started. The hip pain gave me the creeps, it wasn’t something I’d had before so it worried me.

[Slotmachine33 in reply to Fruitandnutcase]

Oh I see I couldn't take the tablet as I suffer with gastritis and the side effects I read frightened the life out of me so had to have the infusion instead but your side effects sound terrible don't blame you for being scared, I will have to wait and see if I will see a doctor see what they think but don't think they will have any idea .

[Slotmachine33 in reply to Fruitandnutcase]

Oh I see I couldn't take the tablet as I suffer with gastritis and the side effects I read frightened the life out of me so had to have the infusion instead but your side effects sound terrible don't blame you for being scared, I will have to wait and see if I will see a doctor see what they think but don't think they will have any idea .

[MyStar86]

is this your first infusion? Unfortunately they never tell you this side effect but yes I had it badly with my first infusion I felt like a 90 year old I struggle to walk I remember saying I didn’t even know I had a tail bone till the infusion and I had constant nausea…..this did last a few months for me but it does wear off slowly once the drugs are where they need to be. My second infusion wasn’t as bad I had the pain for a few weeks maybe 3 and like you it was a delayed reaction however it did wear off faster the second time round. My mum is ok the Zoledronic acid for previous breast cancer and it hit her very hard and she has to take regular paracetamol and unfortunately when it’s for cancer she has to have it twice a year so I am worried about the bone pain for her as I am only 36 but she is in her 70s so the bone pain is amplified.

I hope it eases off for you but yes you Will find lots of people suffer with this side effect.

[Slotmachine33 in reply to MyStar86]

Thank you for replying, yes it was my first one and I did have the side effects they told me about for a couple of days straight after but then I was fine until about 3 or 4 weeks later all this pain started and its been about 2 months now and for the past 2 years I've had chronic pain I go walking daily but now I really struggle to walk where my legs ache and feel weak, I never had that before it just seemed strange that I should start feeling like this now, but because the symptoms started about a month after infusion they don't think it's likely but it could be infusion so I just don't know .

[Zumbablue]

I too had a very bad reaction. Looked like a 90 year old and could hardly walk. Even a sheet on my legs at night hurt. It did wear off eventually but I refused the second infusion- like others I was told I’d been unlucky and it might not happen a second time. On refusal I was offered a daily intramuscular injection. Other than increasing fat around my thighs and stomach (where I inject) I have had no side effects.

[Slotmachine33 in reply to Zumbablue]

Hello and thank you, did your pain start straight away or like me a few weeks later this is the difference with mine it wasn't till a few weeks after so still not sure about infusion being the reason , but that alternative sounds interesting.

[MyStar86 in reply to Slotmachine33]

My pain started a few weeks later as well I thought I had gotten away with it but then when it hit me and lasted months but it did wear off after what felt like 6months xx

[Slotmachine33 in reply to MyStar86]

oh did it that's made me feel a bit better knowing I'm not the only one, did you go to a doctor or did you just put it down the the infusion? X

[Slotmachine33 in reply to Slotmachine33]

also can I ask where you had the pain ? X

[MyStar86 in reply to Slotmachine33]

Yes everyone just said to give it time and it will ease off but I then had a total hysterectomy so I only felt the aches and pains eased after I had recovered from that so it’s hard to know how long the bone pain lasts from the first infusion but I know mine really did take a long time which I’m sorry to say but the second one was only a matter of weeks thankfully xx

[Slotmachine33 in reply to MyStar86]

oh sorry to hear that not very nice on top of everything else, but thank you for telling me that as long as it wears off I don't mind and I hope you recovered well from your operation, thank you x

[MyStar86 in reply to Slotmachine33]

Yes thank you it was last year as I had my first infusion October 2021 then hysterectomy in April 2022 so that’s why I said it took about 6months for the first infusion to wear off pain wise. I then had my second infusion January 2023 as I wasn’t going to do it after thr side effects of the initial infusion but my t-scores had improved so much that my spine in now osteopenia my hips are still bad osteoporosis but the fact that it had made such a big impact on my spine and my rib fractures had healed I went ahead with the second infusion. Which again hit me after a few weeks but the aches from it is only lasted a few weeks so I’m glad I had the second infusion as it wasn’t as bad I didn’t get the sickness or anything like before xx

[Slotmachine33 in reply to MyStar86]

This is the thing it's a hard choice to have the next one if we haven't got enough pain already then it makes more pain , I have my first blood test in November I gather that's to see if the infusion has done its job I'm not sure, that's where most my pain is in my ribs back and front I can't even wear a bra and tops of my legs , I never had that before , I fell and broke my shoulder 2 years ago then 6 months later all back pain started and then found out I had osteoporosis and had chronic pain since but it was all easing with physio but then had the infusion and gone backwards , very disappointing, but hopefully my bones have improved so I will probably have the next one xx

[MyStar86 in reply to Slotmachine33]

The blood test won’t know if the infusion helping the blood test is to check your calcium and vit d levels as the infusion depletes them so they have to monitor your levels closely. I’m so sorry about your pain I know how horrible it is when I broke all my ribs I couldn’t leave the house for 8 months it’s evil. I’m sending big hugs xx

[Slotmachine33 in reply to MyStar86]

Oh thank you I could to with a hug , oh I see so I will probably have to have a bone scan to check the bones perhaps I don't know ow much about how this works lol just want this pain to go away , I think ribs are one of the worst pain that must of been absolute hell for you ! How awful, I will come back on here and give updates hopefully I get some benefit from this infusion in the end , time will tell xx

[MyStar86 in reply to Slotmachine33]

The nhs give you a DEXA scan every two years so it depends when your last scan was as it if you will get one before your next infusion. Good luck with the bloods are you supplementing calcium and vit d? I hope the pain goes away but do keep us posted my mum has started taking tart cherry capsules to help with the pain and aches at bedtime and she has found them helpful so might be worth a look. I hope you feel better soon 🙏🏻 good luck and take care xx

[Slotmachine33 in reply to MyStar86]

I take only vitamin d as the calcium tablets made me sick but I will look at those you said not heard of them before but thank you for telling me and I will update you, thank you xx

[MyStar86 in reply to Slotmachine33]

I’m the same I’ve never got on with supplements but I drink a litre of almond milk a day which has 150% of calcium and but d so all my blood levels have always been fine so that’s a bonus. We hadn’t heard about the tart cherry extract before but it was recommended for the chemo bone pain and it seems loads of people take it and it helps with sleeping and lots of other stuff too so worth looking into as the aches for my mum have gotten really bad since the zoledronic infusion. I hope something helps you xx

[Slotmachine33 in reply to MyStar86]

Thank you Do you buy it from a chemist or herbal shop ? Xx

[MyStar86 in reply to Slotmachine33]

We just looked online and got bottle that way I’ll see if I can find the link to the one we got….I can’t find them we got them off eBay but these are the ones solaray.com/products/tart-c...

However this is an American link which is annoying however if you search Tart cherry extract online lots of places sell different brands as I’m sure it’s all the same thing. A herbal shop would also sell them if you have one near you we just got them online as it was easier mum just takes one at bedtime xx

[Slotmachine33 in reply to MyStar86]

Oh thank you so much I will Google it at have a look online now thank you xx

[Slotmachine33 in reply to MyStar86]

Hello well I had a telephone appointment yesterday with pain management just to talk about medication and I mentioned the pain that started a few weeks after infusion, he said to speak to someone where I had the infusion there the best people to answer your question, so I rung and spoke to a nurse there and she said no it's not the infusion which I wasn't surprised because she spoke like they didn't want the blame for it and probably worried I wouldn't have the next one, so still not sure but the few that has said on here there's started a few weeks after if they were told by a doctor or was told for sure it was the infusion just curious because I haven't been to doctors about it yet, I have ordered some cherry extract by the way so see how that goes, have a good day xx

[MyStar86 in reply to Slotmachine33]

It’s annoying that non of the professionals involved in the infusion will accept the pain that it causes!!!! I don’t understand why it’s not even listed as a side effect but these people have never had the infusion themselves so they just check side effects and it’s not classed as one even if it comes on straight away they refuse to say it’s the infusion it’s a joke. The amount of people on here and that I know externally who have had the infusion experience the pain either straight away or delayed. You can try speaking to your gp but I doubt they will offer any advice as they won’t know either so it’s a tricky one. I wish you all the best and keep us updated I hope it eases for you soon xx

[Slotmachine33 in reply to MyStar86]

It is annoying all they say is if the pain started straight away they could put it down to the infusion but not start a few weeks down the line I just dont know , yes it looks like as a last resort I will have to see what a doctor says but would be good to hear from someone who was actually told by a doctor it could be infusion causing the pain that would be great so fingers crossed someone might see this and be able to put my mind at rest , have a good day and will let you know xx

[MyStar86 in reply to Slotmachine33]

Good luck…….if it’s not the infusion what do you think it is? Hopefully you get a good doctor xx

[Slotmachine33 in reply to MyStar86]

Well I fell and broke my shoulder nearly 2 years ago and had to have complete shoulder replacement and been in chronic pain ever since , 6 months after I done my shoulder my back stared upper and lower and had it ever since , so weather its all to do with that I really don't know but my ribs have always been my weak point but not like this , it just seems to have more pain since the infusion, its all a mystery but I don't get pain when I lay in bed it's when I start getting active and walk about , yeah will see if I can get appointment next week dont like doctors lol xx

[MyStar86 in reply to Slotmachine33]

That’s the same as me and my mum it’s worse particularly first thing in the morning I remember saying when I had to walk it felt like I had wet wellingtons on as my legs were so heavy and it was exhausting to move. Mine went to my hips which I broke a few years ago so they aches like mad if I sat for very long and my back but my back is always bad so it seemed to make my weaker areas worse xx

[Slotmachine33 in reply to MyStar86]

That's a good way of describing it with the wellingtons and yes mornings are more painful can hardly walk when I first get out of bed and didn't have that before and if i go out for a walk my legs just about carry me and I've been doing walking and physio for 2 years so why should my legs feel so weak and heavy now if anything they should be stronger , sorry you have so much pain too xx

[Zumbablue]

It was about 3 or 4 days after the infusion

[Slotmachine33 in reply to Zumbablue]

oh I see so mine mine not be down to infusion 3 or 4 weeks is quite a while after infusion I will see wat the doctors think probably don't know I would think.

[Zumbablue in reply to Slotmachine33]

Good luck

[Slotmachine33 in reply to Zumbablue]

thank you.

[josephinius1]

Just reading comments generally...I know plenty of people have no issues that they know of with these drugs, but if you're already having pain and struggling to get through life, seems like it would be a really hard choice, especially when there's no guarantee they'll even work. So sorry for your experiences. (I've had all of seven doses of Fosamax, so far. Pretty sure I've already done some damage to my esophagus, but it's all so buried in other issues, I don't even know if it matters. And I doubt it will help. But I'm taking it because it's all I've got and I do have a new fracture, so....)

[Slotmachine33 in reply to josephinius1]

Thank you for replying, well this is it with these horrible drugs suppose to make you better but actually can make you ill, I wouldn't take tablet form because of the side effects and I suffer with gastritis so went for the infusion instead but I was fine for a few weeks after and then all this pain so I'm still not sure it is the infusion or not, but I needed to take something, nightmare really , hope you are feeling OK now .

[josephinius1 in reply to Slotmachine33]

Hope YOU start feeling better.

[Slotmachine33 in reply to josephinius1]

Thank you .

[56jennywren]

Hi,

I wanted to give you some info that I have just found while searching.

See the following link on drugs.com which is from US where they talk about Reclast but it is the same thing. It is in the professional information section. I have extracted the relevant section below.

drugs.com/monograph/zoledro...

"Musculoskeletal Effects

Severe and occasionally incapacitating bone, joint, and/or muscle pain reported infrequently with bisphosphonate therapy. Time to onset of symptoms varied from 1 day to years (mean onset about 3 months) after treatment initiation"

I am due to have this infusion and I am dreading it. I have just finished 2 years on Terrosa (teraparatide) and have to follow up with Zoledronic Acid.

Take care

[Slotmachine33 in reply to 56jennywren]

Hello and thank you for the information, its got to be the only explanation I feel like I do after the infusion but because it didn't start till a few weeks after the doctor and a nurse where I had the infusion said it couldn't be but I was sure the infusion had something to do with it and I'm sure there's been others that have had the same thing but just didn't report it , I appreciate you letting me know and hope you are OK when you have it ..