in January I was asking for advice on AA after I had an horrendous reaction, namely extremely painful bones, chest pain, very debilitating and impacting mobility. the consultant decided to try me on Risedronate and I took my first tablet on Monday and 48 hours in I'm back in the same boat. I am clearly allergic to both and grateful that I haven't had an infusion as I can't imagine the state I would be in.
Has anyone else experienced this type of reaction and are there any alternative medicines that you know of which may produce a less severe response.?
Thanks in advance!
Written by
Joey2013
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I had pretty much the same nasty reaction to AA as you have had. I used to take it in the morning the proper way - go for a walk. Come home make and eat breakfast. Then I would sit down and fall asleep for the rest of the day. Next day my bones hurt all over - teeth, ears, one hip which worried me. I felt depressed, my vision was blurred. The only symptoms I didn’t have were gut problems. I felt absolutely dreadful, basically I lost the will to live - I wasn’t suicidal but I certainly didn’t care if I caught covid. I’m not normally like that, I’d say I’m a pretty positive person but I was no longer the me I used to be.
After four months of it I told the lady in the pharmacy to remove it fr9m my repeat prescription because I was stopping it. Panic! She called over to the pharmacist to ask if I could stop it - I said too late I’m stopping it. In the end I wrote ti my GP telling her I’d stopped and asking if she could remove it fr9m my repeat prescription which she did.
I left it at that and soon I was back t my old and cheerful self. Eventually I visited rheumatology and was found out. Lots of pressure to have an infusion which I refused for the same reason you don’t want one. The rheumy did have the grace to say she couldn’t guarantee I wouldn’t feel as bad if I had an infusion but I figured at least you can stop pills but a whole year’s worth of the stuff at once and there’s nothing you can do. Later on my senior consultant phoned me to try and persuade me to have an infusion.
It’s probably not the wisest decision but it’s the decision I’ve made. There’s a NICE decision aid document that shows the risk factors and it shows some interesting points. nice.org.uk/guidance/ta464/...
I suppose a lot depends on your T scores, the causes of yur osteoporosis etc and the risks you are prepared to take or even just how poorly you are prepared to feel in order to continue taking them.
There are lots of other options. For myself I’d avoid Prolia as once you start you absolutely can’t stop without taking a relay drug to avoid fractures and that is usually a bisphosphonate.
I’m sure lots of people will come along with more advice and if you haven’t already done so look on the ROS website there is loads of useful information on there. theros.org.uk
The NICE decision aid document was very helpful… thank you. 😊
I have a REMS scan due in August and I’ve avoided any of the medication so far ( nearly 6 years since diagnosis) and I’ve read nothing yet to convince me to start.
I realise this might be a decision I regret, and it’s very difficult, but that’s how I feel.
You story is almost exactly the same as mine, including the pressure/stress over the injections. However at this time I have been on Risondrate for a couple of months; so far no side effects
That’s good, you certainly come under pressure to take bisphosphonates, I can see why but it bothers me that some people take the meds and carry on fracturing. That happened to my aunt which I suppose deep down puts me off. Do you take your risondrate daily or once a week?
I had a terrible reaction to the infusion. I was told I might get some flu like symptoms for a couple of days. What I experienced was nothing like any flu I've ever had. I woke in the night with the most worst pain in every bone and joint in my body. I couldn't move my partner had to help me just to get to the bathroom. My temperature went right up. It took two weeks for the symptoms to disappear, also I had these lumps that came up on my face, one would disappear and another would come up. I already suffer with digestive issues, and abdo pain but this seems to have made it worse. It was a very scary experience. I really don't know if I want anymore of this stuff but I had been on Prolia so I had no choice but to have it. I know this doesn't happen to everyone and there must be lots of people who have no problems with it.But this is my experience.
Thank you, this is how I reacted to AA and Risedronate! So I am really nervous about an infusion. I can t imagine the pain being even worse than what I experienced but it seems as though this may be possible! Time to make some decisions I think! Thanks again .
I still had some mild pain in my joints, and bottom of my spine after the 2 weeks for another few days. After that the pains stopped, and I have not had them since. That was 9 months ago since I had the infusion. I do still have a lot of upper abdominal pain which was a problem at times for me before the infusion but it got worse after having the infusion, and has never stopped since. I'm still debating if I am going to have another infusion. I am scared to go through that again.
Thanks for the reply I'm too scared to take AA or Risedronate because I already have awful stomach acid and constipation (both of which I believe are made worse by the oral medications ) so I'm very scared of all of them but sort of feel that maybe I should resign myself to the excruciating pain of the infusion as it's only once a year I believe the second dose is supposed to be less severe I'm with the pain clinic so perhaps I can beg them for some morphine or something if it gets too bad Have you considered asking your Gp if he can have opioids at the ready if you need them next time Oh my goodness it's terrifying isn't it
The side effects might not be as bad for you. Not everyone has them as bad. Some just experience mild effects. But you just don't know until you have it. Good luck with what ever you decide to do.
I'm assuming you're a woman of a certain age, in which case you could try body identical HRT. It is way better than bisphosphonates as it builds bone rather than just slowing down bone loss and leaving you with brittle bones.
Hi thank you for your reply. Yes, Im 66 and on low dose HRT (every other day) for the rest of my life but it isn't body identical HRT though. The doctor is calling this morning and I will ask her about this as a possible option. Thanks again.
I also had a bad reaction to the weekly risedronate (Actonel) 35mg which I had to take to stop Prolia safely. My shoulders ached, I felt dizzy and my vision blurred. I just felt terrible.
After a bit of research, I found that there is a 5mg daily risedronate tablet which I took for 2.5 months without experiencing any side effects. Initially I took the 5mg daily risedronate every second day for a couple of weeks, then increased to daily for two months once I felt confident that I wasn't going to experience side effects. I then switched back to the weekly tablet with some trepidation, but I was fine. Drip-feeding the risedronate into my system worked for me. I was able to continue taking the weekly tablet for a further two years until it was safe to stop.
Maybe this approach will work for you too. Good luck!
I tried all 3 bisphosphonates in pill form and did best with the daily actonel except for stomach ache. I only did that twice. My dr wanted me on a higher level drug because of my low dexa scores and I decided on daily self Tymlos injections because I could back out of it should there be a big problem.
I don’t really like it but I have a lot of support from friends on here and the mayoclinic group. So I am muscling through it and gradually increase my dosage.
I took one dose and had terrible pain in my right foot. It felt like I had broken a few bones , it swelled a little, and felt warm to the touch. Hobbled to bed and woke up the next morning perfectly fine. Needless to say, I stopped taking this medication. I current don’t take anything except supplements. I hike a few miles most days, do yoga and Tai Chi a couple of times a week. My bones still show deficits but my dexa scores on my hips have stabilized and my spine scores are slowly creeping higher.
I've had a bad reaction to AA and had to stop. Now taken 2 Risedronate and was due the 3rd tomorrow but this week I developed the most awful sinusy headaches and have been told by Theros.org to stop immediately. My head was so bad this morning I nearly called an ambulance! Now asking for Evista/raloxofene and will try that. Gosh it is a minefield
Sorry to hear that, I hope you feel better soon. So far so good on raloxifene for me and after the severity of my reactions to the other medications it's such a relief! Good luck!
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