Risodronate Sodium: I had a terrible response to... - PMRGCAuk

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Risodronate Sodium

Marijo1951 profile image
21 Replies

I had a terrible response to Allendronic Acid - thought my oesophagus was burnt out. I was booked for an intravenous infusion but cancelled the appointment after reading some horror stories. I saw my rheumy on Monday. She insisted that, as I already have osteoporosis and I'm on a relatively high dose of Prednisolone, I must take something to protect my bones. She gave me a prescription for Risodronate Sodium saying that it is less likely to have the nasty side effects of the Allendronic Acid. I do wonder about this as the instructions for taking it are just as scary. Has anybody else taken Risodronate Sodium. I'll be grateful for any comments from people with experience of this medication.

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Marijo1951 profile image
Marijo1951
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21 Replies
MayH profile image
MayH

Hi Marino 1951 I have been taking Risedronate Sodium for three years and am due to stop it shortly for a five year break ( I think) . I have had no obvious side effects at all. I take it once a week first thing with lots of water. I usually wait for an hour before eating anything and go shower/ walk etc. My doctor told me not to go and lie down that’s all. Good luck 🙂

Marijo1951 profile image
Marijo1951 in reply toMayH

Thank you for your encouraging response. I've decided Sunday is my day to take it. I'll see how it goes.

lizzie47 profile image
lizzie47

Hello Marijo,Yes I take Risedronate and have done for a year as AA did not agree with me either.I also have Osteoporous but have several spine fractures.I do not have any side effects with Risedronate but everyone is different,what suits one may not suit another,I can only speak for myself.Yes I would rather not take them at all because of the scare stories but in a way it was a bit of a no brainer as I fractured early on after starting Pred,but that again is only me.I am hoping as I reduce the Pred the chances of more fractures gets less but who knows.By choice no one wants to be onn these horrible drugs.I wish you well in your journey and try and keep smiling.Liz

Marijo1951 profile image
Marijo1951 in reply tolizzie47

Thanks Lizzie. Sorry that you've already endured a fracture on top of everything else. Yesterday I reduced to 20 mg per day of pred which is another step in the right direction. As you say nobody would choose to have to take any of these drugs. I found out last week that the staff at the local pharmacy know me by name. Until last year I had hardly been in there...

lizzie47 profile image
lizzie47 in reply toMarijo1951

Yes every reductioun is a step forward but slowly slowly is the motto,as many say on this wonderful forum it is not a race to get to the finish post.I follow the DSNS taper and at present on 11/12 pred from a 60mg start some 18 months ago with a few little hitches along the way!! I am hoping to get to the point soon when my hair will stop falling out before I am forced to buy a wig!! Yes we are all very frequent visitors to the pharmacy,not by choice of course!Keep as well as you can and very best wishes.Lizzie

PMRpro profile image
PMRproAmbassador

It is also a bisphosphonate but is said to have far fewer gastric problems. However - if you already have a history of oesophageal problems I would have though even it would be problematic. You can only try it and see how you get on.

It's a shame you didn't accept the infusion - they are the best option for patients with gastric problems. Potentially ALL such drugs have similar side effects but since all drugs have side effects it is something you have to balance against the risks. It is the use of them automatically "just in case" in patients with normal bone density that many of us on the forums object to. When someone already has osteoporosis then it is a very different situation.

HeronNS profile image
HeronNS

I hope that your oesophagus feels completely healed now, because I think it would be risky to take anything by mouth until that is the case. As bone activity is relatively slow I don't think there's any problem with delaying a dose for a bit longer if you feel you would be better doing so.

I hope your doctor made sure your calcium and vitamin D levels are optimum before starting you on AA as it won't work particularly well unless they are. You can do a lot yourself to help your bones without medication, or in conjunction with a couple of years of medication, if your t-scores are really dire, so if you find medication really doesn't agree with you there are still options available to you.

Marijo1951 profile image
Marijo1951 in reply toHeronNS

It's 10 months since I took the AA so I think it should be reasonably healed. If I get a bad reaction, maybe I'll do what PMRPro says - bite the bullet and accept the intravenous infusion.

JaneEd61 profile image
JaneEd61

Hi Marijo1951,

I haven't had experience of Risondrate Sodium but I have been taking Alendronic Acid since December with absolutely no nasty side effects. Other people will report some bad experiences but from my point of view, as someone who doesn't have Osteoporosis, but has a diagnosis of Temporal Arteritis, I did have reservations before taking AA but after a good chat with my GP I've been taking it once a week. I stick to the instructions on the packet ie. taking one tablet with a large glass of water first thing in the morning and half an hour before any hot drink, food or other medication. I'm getting a DEXA scan soon so it will be interesting to see how my bone density is doing. I think it's important for each of us to sort out what's best for us individually. All the very best to you.

Marijo1951 profile image
Marijo1951 in reply toJaneEd61

Glad to hear that you had no side effects from AA. Mine were really dire, like the worst possible acid reflux plus a temporary inability to swallow food. I was very careful to follow the instructions on the pack. The instructions for RS are exactly the same, which is why I still have reservations... But we'll see. I have to admit that I do already have osteoporosis so realise that I should do something to prevent a fracture.

Baileyw06 profile image
Baileyw06 in reply toMarijo1951

I had a bad reaction fromAA .It gave me bone

and muscle pain.I had to go back to 15 mg 0f Pred for 5days and today ,I am going back to 10 and taper to 8 where I was before .The Doctor substituted it for the Calcitonin I was taking because it works better in osteoporosis.I hope now I can get back to where I was without another flare and the pain goes away.

Marijo1951 profile image
Marijo1951 in reply toBaileyw06

I didn't know AA could also cause bone and muscle pain. There's no doubt that each one of us is unique in our reactions.

Baileyw06 profile image
Baileyw06 in reply toMarijo1951

It is in the information that you get with the medication.It can also cause muscle pain that we don’t need any more of!!!

Hi Marijo

I was on AA since l started on Pred but am now on Zolendronic infusions & they are totally unremarkable, so much so l thought they hadn’t put it in the saline drip the first time!

The change over was for a different reason & l just have one more to go.

Hope you get on OK

Mrs N 💅🏼

Marijo1951 profile image
Marijo1951 in reply to

Thank you. Same to you.

Cally55 profile image
Cally55

Changed to risedronate about a month or so back, I have been thinking it not very different from AA , but one of comments made me realise that I don't have bone pain anymore, amazing how one doesn't miss a pain! As to the tedious standing up for 1/2 hour its not as tedious as the vertebral fractures I've already got and on these fine summer mornings I can bear to potter round the garden doing a bit of deadheading, although 30 mins taxes my standing up abilities a bit.

Lucky you to be offered an infusion, the NHS has made lots of excuses to me but I think the root cause is rationing.

Marijo1951 profile image
Marijo1951 in reply toCally55

So, another example of postcode lottery in the NHS? I was offered it immediately when the AA gave me such trouble. I live in north London, attending the Royal Free in Hampstead - makes me sound very comfortably off, but I assure you that's not the case. However I do have the impression that the hospital is quite well funded, though this doesn't necessarily translate into short queues for appointments.

Marcy47 profile image
Marcy47 in reply toCally55

Hi Cally 55,

I am on AA and was told not to lie down for 1/2 hour afterwards, but can still sit down, don't have to stand up!

Cally55 profile image
Cally55

I found sitting upright gave me heartburn whilst walking about didn't, but I don't have a very upright posture, crone shaped at 67!

Bj2016 profile image
Bj2016

Sorry to be so late joining in, I am trying to catch up after a week when I found it difficult to get the time to read the forum.

I also had the zolendronic acid infusion with no visible or tangible side effects. As PMRpro said, it is just a yearly way of getting the bisphosphonate without the nasty gullet and stomach problems..

In my case, my objection was that I needn't have had it, but if you do need it, the infusion is really the way to go. I have a long history of excess stomach acid, bleeding stomach ulcers and Barrett's oesophagus. Believe me, it isn't worth risking upsetting your digestive system any more than you have to. We are all different in our reactions to drugs, but please be wary if you have any problems with the risedronate. On the other hand, my husband took risedronate for over 10 years (before one of the GPs noticed it was too long) without any side effects whatsoever.

Marijo1951 profile image
Marijo1951 in reply toBj2016

Don't worry about being 'late'. I know it's impossible to keep up with everything. Thanks for your comment. I decided against taking the Risedronate Sodium this morning as I've had some mild acid reflux sensations in the last few days. So I'm preparing myself (rather reluctantly) to ring the hospital next week to arrange for an infusion.

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