Hello I'm due to have anadronic acid infusion on the 2nd of August and I'm very anxious about having it as I don't know anything about it or osteoporosis come to think of it, I was just sent for a bone scan told i had osteoporosis and had to have anadronic acid which I've read up on and it has worried me a bit and made me really nervous of having it,has anyone had this that can tell me a bit about how it was and how you felt after, thank you.
Infusion : Hello I'm due to have... - Bone Health and O...
Infusion
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Slotmachine33
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You need to start learning as much as you can as soon as possible. Have a look at the Royal Osteoporosis Society’s website theros.org.uk You will find a lot of information on there. Everything from diet and exercise to the various drugs you may be offered.
You really need to know what the results of your DEXA scan are and you need to know what is causing your osteoporosis - lots of things can cause it - for example a familial link, taking steroids, early menopause, coeliac disease, IBD, hyperparathyroidism- which is nothing to do with your thyroid, the parathyroid glands sit behind your thyroid glands and if they are the cause of your problem then you need to have that fixed before you start taking any thyroid meds.
I don’t take any meds but I know several people who have infusions and are very happy with them, one friend in particular had infusions for three years and is having a break for a year and she can’t wait to get started again. I’ve heard that some people can have flu like symptoms but drinking water before, during and after your infusion can help with that. I’m sure you will be able to find out all that sort of thing on the ROS site and you can also phone one of their nurses to ark questions if you need to.
I’m sure someone who is having infusions will come along and reply to your questions though. I wouldn’t let yourself be pushed into doing anything you are not sure about though- take time to find out all the facts etc.
Hello I had my third Zolondronic infusion last December and haven't had any side effects at all ! I will be having a break now and I will have a Rems scan next December and compare it with results from before the treatment !!in the meantime i am doing weight bearing exercises etc! hopefully things may have improved 😌
Thank you for reply good you had no side effects hope it does you good in the long term, I have had some side effects especially the first night but they ate better now but having stomach ache now and tops of my legs really hurt on my thighs last couple of days not sure if them pains are side effects or just coincidence but only had it 2 days ago so hopefully will start feeling better soon.
I completely agree with Fruitandnutcase. Find out more like she said and then you are in a position to take an informed decision. I am another who takes supplements. That is a personal decision. I have never liked putting chemicals into my body. But everyone has the right to have the info. Have you had a fracture? Ask for your results, I always do. They usually come with a recommendation. But it's not written in tablets of stone. Take some time, I know it's a bit daunting at the moment. Take care.
hello and thank you both for your replies, yes I've looked on the link and read about it but nowhere is telling me what I would like to know about, wanted to know is the infusion safe and what would side effects be if I got them, I've rung and spoken to 2 different osteoporosis nurses and they are not answering either they both said I will get a cal back from someone and I can ask them, I don' know anyone who has had this to ask them how they was after and it is really stressing me out, can't get a phone appointment either to ask my doctor but thought the best ones to ask would be the osteoporosis clinic I have but they couldn't tell me either they said there not qualified and they will het someone to ring me , I have chronic anxiety especially with medication but I know I really need to have this treatment which is making it worse, I just want to know if its safe and what are the side effects and do they wear off of you get them , also I think what has made me worry so much is that none of who I've spokspoken to couldn't answer them questions which is a bit of a worry when your asking if something is safe, thank you for reading this .
Why do you have to have an infusion ? Why haven't they suggested the weekly tablets first ? After a few months on the pills I was in so much pain I fleetingly considered suicide !! I know this is an extreme reaction, but I would NEVER take an infusion (assuming its the 6 monthly one) without knowing if the medication affected me . The happy ending is that I have very few side effects on Risondrate so far
I couldn't take the tablets because of a stomach problem so suggested the infusion, did they say to you the tablets caused you to be in pain?
It was definately the Alendronic Acid. Within a week of stopping the pills, the pain had dramatically subsided. Within 2 weeks, I was back to normal. I was so crippled I could barely move. I screamed every time I got up from a chair. I should have stopped them sooner, but a doctor said "try for a bit longer" Worst advice ever. As I say, when suicide crossed my mind I thought "this is riduculous" and just stopped taking them. I know I had an unfortunate and unusually bad reaction, but I wouldn't wish that on my worst enemy. The thought of having an injection that you then "can't get away from" fills me with terror
ps I must stress this was with Alendronic Acid. I have not had such problems with Resondrate, which is also a bisphosphonate
I'm glad I didn't take them now but I've been told the infusion is something else it's not anadronic acid that's the tablet form I didn't know this when I first put my post up I just assumed it was anadronic acid but it's not , I can't remember the name they told me but its not anadronic acid that was my mistake in my first post but the infusion sounds very similar, glad you got better after stopping them .
That sounds awful - glad you’re feeling better now ❤️
I had an infusion last October. I have to say I had the most terrible bone and joint pain afterwards it took a good two weeks to subside completely. That is just my experience and that does not happen to everyone and you may not have any problems. I would say to drink plenty of fluids prior to and after the infusion. It flushes out the kidneys also take paracetamol or Ibuprofen before you go to bed that night you may also need to take them for a couple of days afterwards depending on how you feel. Hopefully you won't get any or just mild effects.
Thank you, yes I was told to take paracetamol but wasn't told why and at the time on the phone I didn't ask, can I ask after the 2 weeks was that it did you feel back to normal from then on.
I had the infusion in the morning the bone pain didn't start till the middle of the night it woke me up also had a temperature. It was quite bad for a few days but gradually started to subside over the next two weeks after that it went away. The last thing to go was the pain in the bottom of my spine. But that's just me. I do have a tendency to react to medication.
Thank you jimister for telling me x
Do ring the ROS, they are very knowledgeable and can advise you. Do you research but remember that not everyone gets side effects.
I had my first infusion and was extremely ill, vomiting, hallucinations, incontinence etc for a day or two. I felt like I had flu for about a week or so after.
I swore I would never have another one, but a year later when it was due, I phoned ROS and they advised me to ask for the infusion to be slowed down from the previous 15 mins to 30 mins. Also to drink plenty of water the day before, on the day and the day after and take painkillers, especially on the day , even if you feel okay. The side effects start about 12 hours after.
After a lot of deliberation, I nervously had the second infusion and although I had the flu symptoms, I was not sick or as poorly as the first time. I also felt my bones, particularly my back getting a lot stronger and I had more mobility, so I felt it was worth it.
I had the third one in the spring, again slowed down and drink plenty and apart from a headache and a little bone pain for a few days, I was fine.
Reading the accounts on this forum, it seems that the first infusion is the one that most people have side effects from. If you are prepared, it will not take you by surprise, (like it did me.)
I understand the feeling of having something in your body that you have no control over, like taking tablets which can be stopped anytime, but my only choice offered was zolendronic acid or Prolia. After so many people reporting rebound fractures on and after stopping Prolia, I decided that was not for me.
I had a very painful spinal collapse before I took any meds, thinking diet would keep me okay, but I was wrong. I would never wish that pain on anyone, I had 6 weeks in hospital and could barely stand.
I now have a different outlook on the infusion, I can walk, albeit with a frame, I can bend forwards more, use my arms, although I still cannot lift heavy items and generally feel better and stronger. I lost nearly 4 inches in height but now standing straighter, gaining a little more. Better still, I don't have to worry about taking meds that upset my stomach, daily jabs or rebound fractures. I am free from all of that for another year.
I will have next year's infusion and then have a "holiday" from it, depending on my Dexa scan scores.
I know it feels like you are between a rock and a hard place, but my personal experience may help you to come to a decision.
By the way, having a much stronger back and limbs helped me in my total hip replacement op in February. A win win situation for me!
Good luck and don't forget to ring ROS.!
Thanks fir reply but oh my god you did have bad time ! That sounds horrendous, well I have been in touch with the osteoporosis society and spoke on the phone to a nurse and feel a lot better now, she did say about might get side effects like flu symptoms but that's all , so I will have it and see hiw I go as long as side effects wear off I will have to put up with it I suppose because I need it done and waited a long while for the appointment but thank you for what you have told me .
thank you for your reply
Hello! Are you referring to a Reclast infusion? I am not familiar with the term anadronic acid infusion. I have had two Reclast infusions and would be happy to share my experiences if that is what you are going to get.
hello thank you, I spoke to a nurse this morning from the osteoporosis society to ask about the anadronic acid and she told me that is the tablet form I didn't know that I just assumed because that because that's what I was given but was unable to tolarate I thought it was going to be the same but in an infusion but she said its a different name with an infusion but I cant remember what she said now so dint really know what I'm having but will make sure I do before I have it, I did Google the infusion and there was 2 different ones they can give you and I'm sure I see that name reclast on there but can't be sure , but yes I would like to know how you was after it please , I've been on a forum about it and some of the posts have frightened the life out of me with what some were saying about side effects wish I hadn't looked now lol.
If you're in the UK, it will be Zoledronic Acid infusion, which is a bisphosphonate (same type of medication as AA). That's the only annual infusion, or there are Prolia (denosumab) 6 monthly injections, but they need to be followed immediately by a bisphosphonate if you stop them.
Yes I'm in the uk I should really know what I'm having but I wasn't told but thanks for that .
I understand your trepidation. I was very anxious about getting the Reclast infusion, but finally got my first one over a year ago. I drank a lot of water and took a Tylenol beforehand. I think that is extremely important to do. I believe I also took a Tylenol afterwards. I had absolutely no side-effects whatsoever. The nurse who administered my infusion said she rarely heard of anyone having a problem. I felt more confident going into my second infusion in May. I followed the same protocol and this time I did feel very fatigued the day of the infusion. I have arthritis in my hands and the day of the infusion my hands really hurt. But, the next day I was back to normal. My story is a positive one and I bet you will do fine too!
thank you so much for telling me how you was I really appreciate it and so good to hear a positive story, yes I've been told to take paracetamol before and after I think that's another name for tylenol I'm not sure and i will drink plenty of water thank you, so good you had no side effects I have mine on the 2nd of August I will come on here and let you know how I was, thank you I feel so much better now I suppose I've got to think positive instead of sitting here worrying lol x
Best of luck! I hope to hear that all went well for you. The odds are that it will!
Thank you !!
Hi well I've had the infusion it did go well but I was a bit of a mess when I got there but the nurses were all very nice and understanding and talked me through everything and answered all my worries before I had it so that made me feel a bit more relaxed feel OK at the moment just a bit light headed and still a bit anxious but fingers crossed I will be OK with no side effects, I'm drinking loads and taking paracetamol can't do no more than that I'm so pleased I went through with because I nearly didn't lol but I know I needed it done, thank you .
You are so welcome. I felt the same way the first time and like you, I had a great nurse who alleviated my concerns. Let me know in a couple of days how you are feeling!
I will do.
Hello, I have only just read your post. I wanted to reassure you that I had no side effects whatsoever. I had my first in April and was nervous. I know you have had the infusion now and I hope you have no side effects. Just rest a bit and drink a bit more than normal for a day or two after.
thank you very much I'm drinking loads at the moment just can't keep off the loo lol
Well I didn't get away with side effects but not as bad as I thought I would be, not sure if this is to do with it but started to get bad stomach ache or cramps and the tops of my legs are really aching on my thighs but could be coincidence mainly bad in the mornings but only been a couple of days since I had infusion but iver all not feeling too bad and hopefully feel back to normal soon .
I am sorry you have some side-effects, but I hope within the week you feel back to normal! Fingers crossed!
Hi, I’ve had this infusion three times now, and didn’t have any side effects on any occasion and felt fine. I took a couple of paracetamol beforehand and drank a couple of extra glasses of water throughout the day to stay hydrated.
My mum also used to have the infusions, and used to get mild flu like symptoms, similar to how you feel after having a flu jab.
As others said, I would suggest reading up on osteoporosis.
Also remember that whilst this forum is great to share experiences, it is often people who have bad experiences that make it onto forums, whilst those who have mild or no side effects often don’t bother reporting their experiences.
Oh thank you so much for telling me that I'm trying to think positive getting bad anxiety now its getting closer but I'm going to drink and take paracetamol and try to stop over thinking about it, I think what's making me feel worse is I'm in a lot of pain with my back and arthritis if I felt fine I dont think I would be as worried, thank you again.
After reading these comments I was reminded that I, too, asked for the infusion to be slowed from 15 minutes to 30 minutes. I do think that makes a positive difference as well,
I also didn't have any bad side-effects (I've only had one infusion and chose not to have a second). I drank plenty of water, and rested afterwards (a good excuse to sit and read all afternoon!) and was absolutely fine.
thank you for your reply and pleased you were OK
I agree with Nertyporthole - on any health forum you tend to get responses from those who’ve unfortunately had a poor reaction. I’ve had the Zoledronic Acid infusion three times now. The first time very slight flu like symptoms but hardly noticeable, the next two times no reactions at all. I’ve not had any fractures whilst on it and my bone density has improved. I follow a good diet and take sensible amounts of exercise too. The ROS are extremely helpful both on the phone and by providing extensive literature and videos on osteoporosis, so, again, good advice to use them.
Good luck& hopefully it will all go well for you too.
thank you sounds very promising I'm reading up on it all the time still a bit nervous though but fingers crossed .
Hi i used to take aladronic acid tablets but was reall y ill on them but last few years been on the injections with no problems at all i have them twice a year
Thank you for that made me feel better , thank you.
I've had 3 zolendronic acid infusions with very little side effects. I had to fight to get it though as Dr's want you to have the cheapest option rather than what's the best for you. With hiatus hernia, reflux etc I knew I would be better off bypassing the stomach with an infusion instead of tablets. After reluctantly trying 2 types of tablets, I refused to take anymore and got a referral to hospital to discuss options. It was decided that I should have yearly infusions of zolendronic acid for 5 years. I'm happy with that but worry about what will happen at the end of the 5 years as the current alternatives don't appear to be suitable for me due to other health problems and drugs I am on.As you also have stomach problems I think you were very lucky to be offered the infusion straight away.
Hi, I replied to your question a little while ago telling you about my experience with zoledronic acid infusion. I was wondering how you got on with it, and if you are OK. Hope you don't mind me asking.
Hello and course I don't mind and thank you for asking, I did have some side effects the body pains and very larthargic had them for about 3 days stayed in bed the first day but feel fine now , I'm glad I had it now I nearly didn't I was so worried about it as you know , so hopefully do its job now but thank you for asking x
So pleased that you got through it without too many problems.
Thank you so am I lol x
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