Zoledronate infusion? : I haven’t posted on here... - PMRGCAuk

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Zoledronate infusion?

Suet3942 profile image
13 Replies

I haven’t posted on here for ages but read the posts daily. I’ve been taking pred for 12 years now and am currently taking 3 mg daily. In December I was diagnosed with Atrial Fib and prescribed Biosporol and Epixoban. A few weeks ago I saw a new rheumy after a period of 2 years where I had numerous appointments cancelled. He was quite thorough and has ordered a Zoledronate infusion which is booked in for July. After reading the info about this I’m not sure whether or not to go ahead. I have osteoporosis and obviously am worried about weakening bones. In the info it states that it can cause pain and an increased heart rate! Has anyone had this done recently and what was the outcome.

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Suet3942 profile image
Suet3942
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PMRpro profile image
PMRproAmbassador

In January I finally had an ablation for quite severe paroxysmal a/fib and then 3 weeks later a zolendronic acid infusion as a suspected spinal compression fracture had been identified. I have never taken a bisphosphonate and according to the dexascan done about the same time my bone density is still pretty good but my rheumy was a bit concerned after 15 years of pred.

The ablation cured the a/fib and for 3 weeks I felt nothing. After the infusion I didn't really notice any arrythmia as such but something was different. The Holter monitor I had to have done before the follow-up cardiology appointment showed I had developed atrial tachycardia. Apparently bisphosphonates can do that she said. The response was to tell me to increase my dose of bisoprolol from the 3.75mg a day I was on with no adverse effects at all and I should titrate the dose up to 10mg if required. Oh yuk - not amused, I can hardly stay awake at 7.5mg. I have dropped back to 5mg and keep a tablet handy as "pill-in-the-pocket" at night because when I was having episodes it was waking me. It does seem to have lessened.

However - there will have to be some deep discussion before the next infusion. I was hoping for LESS medication, not more! I'd definitely speak to your cardiologist.

Suet3942 profile image
Suet3942 in reply to PMRpro

Thank you PMRPO for your advice and experience. I think I will cancel the appointment. I’m on 3.75mg of biosoprolol and fall asleep a lot. Don’t want to make things worse.

PMRpro profile image
PMRproAmbassador in reply to Suet3942

It may not happen to you and I really would discuss it with your doctors. How severe is your osteoporosis? It is such a difficult decision - we are between a rock and a hard place. I don't even have osteoporosis but there is the sign I have had a spinal compression fracture - and they can be awful. I have got away with it so far. What I don't know is whether she might offer a second attempt at ablation - I woud take it if offered. But maybe it isn't any point if I get more bisphosphonate.

Longtimer profile image
Longtimer in reply to Suet3942

I have had 2 infusions and third due in September. I react to all meds, but I didn't have any side effects, so fingers crossed. I do have Osteoporosis.....good luck with whatever you decide.

Suet3942 profile image
Suet3942 in reply to Longtimer

Thank you

Green_girl profile image
Green_girl

If you generally get on with chemical drugs and don't have any known stomach issues, hopefully you should be OK - most folk are. Some side effects could last for several weeks (if you get any at all). Just remember to drink litres of water before the infusion and more litres afterwards. Maybe clear your calendar for a week, just in case - just take it easy. Apparently the next year's infusion should give you less side effects......

If you do happen to get side effects that last for more than a few weeks (note this! The side effects have to be quite extreme), document them and go to your GP.....very often the Rheumys don't know about side effects and you will not get any help there. You may have to prompt your GP as they won't know anything about Zoledronate, as it is given in a hospital setting. If you get such extreme stomach issues, for instance, ask about a gastroscopy, which is the only test I know of which looks inside the stomach....

If you have ANY reservations about accepting the infusion, ask to see the Patient Information Leaflet (you see these when getting drugs OTC at the pharmacists, but not in hospital). The Hospital pharmacist should be able to obtain one. Read this before accepting the infusion. it will give you extra info on top of the Royal Osteoporosis Society leaflet on the drug.

The above is based on my having rare side effects which I'm still getting to grips with after a year and a bit, so speak from experience. But I will say again, most folk get on well....I'm an aberration!

Good luck.....

PMRpro profile image
PMRproAmbassador in reply to Green_girl

I have to say - the Mayo article is pretty comprehensive!!!!!

mayoclinic.org/drugs-supple...

Green_girl profile image
Green_girl in reply to PMRpro

I find the PIL better laid out and based on reports to the Yellow Card Scheme here in the UK. but probably worth thinking about both!

Rebsy profile image
Rebsy

Diagnosed with PMR in 2021. I’ve had 2 zolendronic infusions and had no side effects at all. I have osteoporosis already at 56 but no other issues at the moment. My mum - 82 - has osteoporosis too and was diagnosed late following spinal fractures which caused her a lot of pain.

Suet3942 profile image
Suet3942 in reply to Rebsy

Thanks for your input

Sophiestree profile image
Sophiestree

Like Longtimer I am very sensitive to medication and also have a poor bone density -3.9

I had tried Biphosphonates about 15 years ago but only managed 3 weeks and had to stop so avoided anything after that.

I finally had to give in when diagnosed with LVV and surprisingly had no side effects with the Zolendronic infusion at all which was my biggest fear.

Have you had a dexa scan? And know your results?

Timelost profile image
Timelost

Yes I had an infusion just before last Christmas and have been fine. I had been on Prednisolone for about 18 months and developed osteoporosis.

Suet3942 profile image
Suet3942 in reply to Timelost

Thank you

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