Alternative to oral bisphosphonates

[mollysuki]

Is there an alternative to oral bisphosohonates if you’re unable to take them. I may have to come off Prolia and I’m aware of possible rebound fractures if you don’t take a relay medication of bisphosohonates. I’m unable to tolerate oral bisphosohonates. My question is what can I take? Or am I doomed to having yet more fractures. I really do think that having osteoporosis sucks! I’ve in the past before OP had a very good exercise routine doing various classes I’m now doing online exercises classes for strength and balance and a class of TaiChi. These are both seated classes and aimed primarily at ‘old old’ people. It’s nigh near impossible to go to a class for the ‘inbetweeners’ like myself neither young or old. It’s all so depressing. Not sure that selling/buying a badge from ROS is the best use of our membership money. Rant over! Advice welcome. Thank you 😊

[Met00]

Zoledronic Acid is an annual bisphosphonate infusion. You need to have it as close as possible to the date your next Prolia jab is due.

[mollysuki in reply to Met00]

Will it give me problems with reflux with as I have gut issues which is why I can’t take it orally. Thanks

[Met00 in reply to mollysuki]

Having an infusion bypasses the stomach so for most people it will avoid gut issues. However, it isn't possible to guarantee this, as for some people the medication can still cause digestive issues. Unfortunately if you stop Prolia you really do need to go onto a bisphosphonate, so it would seem sensible to have at least one infusion of Zoledronic Acid and hopefully you'll be in the majority who don't have problems. It's only once a year, so if there are side effects, they're likely to occur in the first week or two, then you can forget about it for a year.

[MWZ3 in reply to Met00]

Not sure about this. Some people suffer all the way through these long term doses like my sister did with prolia.

[Met00 in reply to MWZ3]

That's why I said it can't be guaranteed. But if mollysuki wants to stop Prolia and can't tolerate oral bisphosphonates, she doesn't have much choice.

[emersee in reply to mollysuki]

Hello mollysuki.

I had my first infusion of Zoledronic acid on the 24th of January 2024. As it was my first dose, it was given very slowly, over 40 minutes. I do not have any issues with reflux. The side effects I experienced began on the 25th, with extremely severe muscle pain - it was like all my muscles and nerves were set on fire. It was worst on all areas of my back, where I normally have back pain. I also felt extremely dehydrated with headache (which I never get), a raised heart rate and very thirsty. We are told to drink lots of fluids before and after the infusion. Take that advice! I was better the next day and could get to the gym but very sore on the 3rd day. Today is day 5 and I only have a little bit more back pain than usual. Absolutely no symptoms of reflux, nausea or vomiting. So hopefully we will be fine with the infusion. Good luck with it!

[Green_girl in reply to mollysuki]

It gave me damaged stomach lining and gastritis - it's still there after nearly a year but much better. Used Slippery Elm powder to help - and it coats the osephagus and stomach with a mucus-like substance. Have in morning on empty stomach. So if you do get long-term issues this will help. But all medications for this condition seem to suck in some way! Report to Yellow Card Scheme if you do get side effects, as this adds Tia's this counts . You can also get the manufacturer name and report to them - and to your medic...not that they're interested. They still need to know!! Good luck - sadly you have to try the infusion as you don't want to be left with weaker bones.

[t1gernidster]

There was a comment on here recently about someone who had a Zoledronic infusion and it upset their stomach. She contacted the manufacturer who confirmed that this was indeed one of the side effects.

[MyStar86]

Below is a like to the Royal Osteoporosis society website listing all the treatments available if you click through them it gives you a break down of what they are and who can have them there are lots of options even HRT for females but it’s the best place to look for accurate information xx

theros.org.uk/information-a...

[MyStar86 in reply to MyStar86]

There are a few options available to women that have been through menopause but can’t be offered to women if they haven’t due to the way they work one example is:

Raloxifene is not oestrogen, but it acts like or 'mimics' oestrogen inside your bones. This can slow the breakdown of bone and help to keep your bones strong.

I don’t know anything personally about these medications well except HRT because I have to have that due to having a hysterectomy in 2022 aged 35 and I am also on the Zolendronic acid infusions however information on the other options available can be found in the link I sent. I hope it helps x

[Screwed]

Good morning,

I too am looking to get off Prolia and am wondering about the options. I have scheduled an Endocrinologist appointment a month before I see my rheumatologist before I am scheduled for injection 4 in May. I was never put on a a bisphosphonate; just advised to take PROLIA..... mistake for me. I wondered about ZA, but don't want those side effects, but it may be my only choice.

[Mavary in reply to Screwed]

Why are you stopping Prolia. Is it upsetting you in any way. I know there can be a lot of controversy on this group about it but I’ve been on it for three four years now with no problems. I don’t understand?

[Screwed in reply to Mavary]

well after my second injection I had this bruising/bleeding around my knee. It came and stayed for 3 weeks then dissipated and returned. My hair started falling out. Then I got the 3rd injection, spot returned about 1/2 dollar size two days after the injection, then my neck and shoulders were screaming at me each night and still are. It wakes me up nightly. All my joints are hurting. and I have difficulty walking a 1/2 mile now. Whereas before injections I could walk 3 to 5 miles,no joint issues nor back and neck pains. I have resorted in seeing a chiropractor who uses a tool to adjust my neck since I won't let him manually adjust me anymore. I cry quite often and can't turn off the tears. There are bouts of depression as a result. I take no other medication except vitamin D3, Vit Km7, and Boron. I drink my calcium in form of almond milk, eat yogurt, and cottage cheese. I'm 62 and don't want to be looking at taking this drug for my duration. I think it's leaving me in a worse state than the -3.5. I was exercising at the gym with weights and walking and had no fracture issues. Now I will be worried about fractures as a result of trying to get off these meds. Maybe when I am 70 or older I would reconsider something but not prolia. It shouldn't have been the first option, but that's what my rheumatologist put me on. UGGGGHHHH

[Mavary in reply to Screwed]

I think it’s a first option because for thevright people it’s the best treatment. They tried me on Alendronic Acid first but I was violently sick after taking the first one. My bone score was really bad. It has improved with Terraparatide and now Denosumab. I’m hoping it continues. I’m sorry you’ve had such a bad reaction from it. There are other drugs you could have. My friend is on Risonodrate. I’m not sure if the spelling. But it seems to be working for her. I believe anyone can have a reaction to any drug and unless you try you won’t no. I would take the advice of the Consultant or Dr. I didn’t have much choice. My spine Dexa was -5.5. I’m glad there was something out there for me after seven spinal fractures.

[Bayleaf1 in reply to Mavary]

It’s really good to read a comment from someone who feels ok on denosomab as I am scheduled to move on to it in August when my year of Evenity injections end. My DEXA score was -5 in my spine so I am hoping for improvement but know that I must then take something like Prolia to follow up. I know everyone reacts differently to any drug but I find it reassuring to read some positive comments as I feel we all are very quick to talk about the negative side of things, me included I might add , but I need to cling on to some sort of hope that things will get better.

[Mavary in reply to Bayleaf1]

I don’t know about Evenity as I was on Terraparatide to start from. As I say my bone score went from -5.5 to -4.6. I think that was brilliant. It’s a shame you can’t stay on it.

[jozef123]

Hi Mollysuki I came off Prolia because I couldn’t tolerate it and was told doc at bone clinic couldn’t help me. It took me 6 months to find another clinic. Meanwhile I got rebound fractures, I now have about 16 The new doctor gave me Xolendronic acid infusion which I was ok on. I now inject teriparatide every day which is good and I should have had when he sent me away. It’s cos it’s expensive. I have vertebroplasty in all my fractures but take painkillers and use heat but at least I m upright and can walk thanks to my brilliant surgeon.

[Ihatescams in reply to jozef123]

How many injections of Prolia did you have?

[bluepettals7]

www3.nhk.or.jp/nhkworld/en/ondemand/video/2050123/

this is informative its japanese resaerch into osteo and excersises to do

my homeopath has suggested to my sister to take magnesium , k2 and boron if that is any help also collogen. may have to copy the link above and paste into browser as it wont underline

www3.nhk.or.jp/nhkworld/en/ondemand/video/2050123/

[Deb967]

Hi Molly, I’m in the same situation as you. I had 1 Prolia in Feb and I’m seeing a Rheumatologist in May to get me off Prolia due to many side effects. I have to have a IV Bisphosphonate due to having Gastric Bypass. I can’t take it orally.

[Screwed]

in order to get off Prolia without rebound fractures you have to relay to another med. I had 3 injections and am transitioning with a reclast infusion next Friday. Hopefully it goes well.

[ROSModerator Partner]

Hi all,

Thank you for all taking the time to come on and share 😊 We just wanted to drop by to let everyone know that we have lots of information on our website that might be helpful, including information about medications and understanding drug treatments: theros.org.uk/information-a...

And more about denosumab: theros.org.uk/information-a...

We hope this might be useful for anyone coming across this thread 😊

Wishing you all the very best,

ROS Moderator