Risedronate Update

[Calamintha]

Having had a long break after stopping Alendronic Acid, I started Risedronate on 2nd June 23.

For the first few weeks I was fine. No noticeable side effects. (After the terrible time with AA you can appreciate I was overjoyed.) However about 3 weeks ago the same symptoms started creeping back. Admittedly in the form of discomfort/pain rather than agony. At first my knees started to hurt, then discomfort getting out of a chair (With AA I used to cry getting out of a chair !) Then my arthritic joints started hurting continuously (as opposed to occasionally) and other finger joints joined in. Now my hips hurt every night again, enough to wake me. As yet I’ve not had the awful shin pains that I had with AA. The pains in my feet which do have other causes, have been greatly exacerbated, just as they did with AA - A curious side effect is that sites of previous injury have been hurting/mild discomfort. I was told that Bisphosphonates can’t cause scar tissue pain, but this seems odd given that it’s starting again. A new symptom is gut discomfort, which I didn’t have with AA, and my Acid Reflux appears to be worse (Co-incidence ?) The guts are the same level of discomfort every day, not just when I take the weekly pill.

Whilst at the moment these things can be tolerated, they are making me “worn and miserable” particularly now that my sleep is very disturbed again.

I feel I’ve got to make a choice about stopping:- Can you “stop/start” with Risedronate and maintain some benefit whilst reducing symptoms ?

I don’t really know what to do next. I’m utterly terrified of all the 6 monthly injections. I know they aren’t Bisphosphanates, but I’m not keen because 1) if you have side effects you can’t stop them 2) rebound; To come off them you have to take Bisphosphanates (Covid proved that getting access your next shot isn’t always under your own control)

I suppose I’m looking for opinions, and to see if others have had all these problems. (I do take calcium, K, D etc and moderate targeted exercises)

Thanks for reading the rant 😀

[Met00]

I guess the medics would say you need to take risedronate regularly for it to achieve anything. But I don't think it's a good idea to take if you have reflux, as if that happens long-term it could risk damaging your oesophagus. I'm actually wondering why you're on osteoporosis meds if you only have osteopenia, particularly if your doctor has put the deterioration down to Omeprazole (I think I read that in another post?) I would ask your doctor to discuss the pros and cons of bisphosphonates - the last thing you want is for the medication to cause other health problems or make it difficult for you to cope. Bear in mind also that bisphosphonates aren't guaranteed to prevent fractures, they simply reduce your personal fracture risk by about 50%, which sounds a lot, but if your risk is only, say, 10% to start with, it would only reduce by 5% (50% of 10%).

[Calamintha in reply to Met00]

Thanks. Thats helpful. Sadly many of the doctors round here "follow protocol" rather than look at individuals. Presumably because they are so busy. Those at the arthritis/fracture clinic where I was previously refered were positively hostile at times. (No fractures, btw) I know if I stop taking it I'll get "bullied" again. However there is one doctor who is much more wholistic in her approach so I may try to see her again. My friend has worse scores than me, but because shes not had cancer they don't pursue her. (like me, she does have a H.Hernia though) It's a very odd system. The cancer meds made the bones worse, and I had to stop omeprozole because that can also make it worse too. Again; with my friend, they vaguely mentioned to her to stop omeprozole because of her scores but haven't insisted, so she has no bone meds and still takes omeprozole 🤷

[Met00 in reply to Calamintha]

It's shocking the way so many doctors use bullying tactics. I can't share the link from my phone, but if you Google NICE bisphosphonates patient decision aid you should find a PDF that explains the pros and cons of bisphosphonates. You need your FRAX fracture risk score to make an informed decision.

[Fruitandnutcase]

If you really don’t want to take bisphosphonates and understand and are prepared to take the risks then just tell them you don’t want to.

nice.org.uk/guidance/ta464/...

I just quietly stopped them myself but of course when I saw my rheumy I came under quite a bit of pressure to have an infusion. The young female rheumy did have the grace to say there was no guarantee I wouldn’t have the same side effects as I had with the AA tablets although she was desperate that I have infusions. Then later on I had a phone call one night at about 7.30 from my actual consultant saying he wasn’t trying to bully me into having an infusion but he could arrange for me to have one. I probably sounded hysterical at the thought of feeling as dreadful as I had done all over again and he backed off. Since then I haven’t come under any pressure.

[MWZ3]

I can’t see anywhere that you’ve stated your tscores. People are prescribed these drugs that really aren’t even indicated by the results of their scans.

For example, -2 isn’t osteoporosis it’s only osteopenia. If there’s a discrepancy between results like for the hips compared to the back they could be wrong as it’s from the same body.

Have you broken any bones that weren’t from a justified fall?

A person’s age is also relevant. If you’re 50 then you have a lot of good years left, but at 80, only take drugs that are really needed to sustain life.

They don’t seem to be good drugs if there’s such a thing. I take drugs for diabetes because they are necessary and well researched. I don’t take drugs for osteoporosis because I’ve never been able to feel happy about their safety. I get ready to start but baulk each time and refuse.

[CloudyD]

Hi. Sorry that you're having these bad experiences. It must be quite a worry with all the complicating factors.

I'm on risedronate and had some leg problems early on but sounds like they weren't as bad as yours and I was able to exercise my way through it until they went. Don't know what I'd be doing if they hadn't as my scores are bad and I've had a fracture not from a fall. But my rheumatologist has also now put me on the more expensive branded tablet that is gastro-resistant (and taken after breakfast not on an empty stomach) so maybe that makes a difference. Can you see if they'll do that? Or maybe the experience is already so bad it won't help.

I too was put on Omeprazole a long time ago and found it didn't really work and I wasn't happy about taking it long term. I was berated by my then doctor for stopping. Amazed me that at no point did a professional talk to me about diet and food sensitivity. I thought I was eating a healthy diet, but after carrying out an elimination diet, when I reintroduced foods I found that I have a huge problem with gluten. I'm mentioning this because in one of your replies you've written about having reflux and previously being on Omeprazole. I can't say I never have reflux now but it's considerably reduced, and cutting gluten stopped the stomach pain and significantly reduced brain fog. Gluten may not be a problem for you, it isn't a problem for most people, but you might find a different food that is. Elimination diets are not easy, but the only true way to find out if a food is causing you a problem. If your stomach is under stress you can often not be absorbing nutrients sufficiently.

It's not easy to weigh up your bad experience with meds against your real risk with osteoporosis (or osteopenia?) . I tried natural means and my situation got worse, so I'm sticking with meds for now, but my first scores were well into osteoporosis not osteopenia and I didn't have your side-effects. In all cases, my Rheum. said to stomp more - the vibration helps the bones, so I also do a lot of stomping around now!

[Hidden]

Hi Calamintha, you mention cancer if you have had breast cancer we have a fact sheet that helps explains the risks of the post breast cancer drugs regarding bones.

strwebstgmedia.blob.core.wi...

[Thanksnhs]

Hi, I have osteoporosis made worse by a year on steroids after a transplant. I take riseodronate for it, I take a lot of meds so I am never quite sure what causes the side effects. I had terrible problems with acid reflux and at the time I was and still am taking lansoprazole my cardiac consultant prescribed famotidine for it and it was like a miracle! I have never had it again I no longer get heartburn and need for gaviscon either. I know we are all different and on different Meds but it might be worth mentioning it to your doctor. I got a dexa scan this week the first since I stopped the steroids a worrying time till I get the results. I hope you can get a solution for your side effects there is nothing worse than being in pain. Take care char

[jewelinbag]

Calamintha

I have just come on the scene and this is my first comment! Sorry to hear your problem. I have been on Risedronate for over 15 years with only a break several years ago. (I think the doctors forgot about me, and l tolerated it well). It was only when l had an accident on bus l fractured my back, that docs said l needed to have some protection, so they started me on Denosumab (Prolia). I had two injections in all, Side effects sent me to A and E, they were so bad. Then l read a lot more about the effects of this drug from comments made by people on the internet and l found them horrendous, so l stopped. Doc put me back on Risedronate ,but after a year, l have taken myself off them, despite doc . as l started getting lots of pains and aches and swallowing problems, which is why l had a break in the first place. I feel so good, l cannot tell you, but am seriously worried that l take nothing now, except vitamin d, but trying to compensate with a little walking everyday, and better diet. Has anyone any other ideas?

[superbones]

It is just a horrible minefield out there. I did three weeks of AA and then stopped. Like you everything started off fine for the first week and then on day 10 and 3 days after the 2nd dose I started to feel abnormally tired and bloated. I took a third and then stopped. Gave it a month's break and then tried Risedronate. Exactly the same time frame - week 1 okay and then day 10 the headache started. I never have a headache. I stopped and didn't take a 3rd. The headaches were so appalling- relentless and turned to sinusitis. I am now on antibiotics desperately trying to get back to feeling normal. Still a long way off. I am now going to go to see a rheumatologist privately because I don't know what to do and I am miserable. I think I would probably try the Raloxofene before infusion but will wait to see what an expert thinks. I am nearly 70 and am -3.3. I don't really know if this is a bit bad, fairly bad or very bad.