I am booked in for an infusion of Zolendronic Acid early November and would love to know about others experience of this please as Im really worried about side effects. I have been very reluctant to have this (unable to take Alendronic Acid tablets) and repeatedly asked for a dexa scan to help with my decision. I was initially told that a scan wasn't possible because of covid but I now have an appointment to have the scan one hour before the infusion which doesn't give me the option of choosing not to have it if my bones are found to be good. Rheumy said that they would still want me to have the infusion even if I had a good result but at 72 she felt thats not likely anyway.
After a truly awful year health wise Im finally beginning to feel well, my GCA is under control and I'm quite fit and happy all things considered. Ive tapered from 60mg Pred down to 25mg since end of May so I don't want to take something I don't need if it has the potential to make life miserable for me again and I understand this medication can cause problems.
Spoke to the Osteoporosis Society Nurses for advice but it honestly didn't help me. Would really love to hear from someone who has been through it and willing to share their experience and not just read the book!
Thank you
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HappyDiamonds
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Oh dear, rubbish timing. One thing to remember is that you are the gatekeeper to your body, not them. They are in effect advisors and it is your choice, but I do realise the anxiety of keeping them ‘on side’ and the wretched ‘what if’ demon of course. The lack vote of confidence re your bones is a bit harsh, but could be true, but then again, no you won’t have the bones of a 20 year old but that may still be ok enough. Option one is to have the infusion but then refuse more if the scan is ok enough. If the scan is ropey, you’ve done the first infusion. The nurse won’t ever say you shouldn’t do it; it is not worth her job should your scan turn up bones that are worryingly sparse. Or you can hold your ground and refuse the infusion until the scan results are out. It’s reasonable in my view, but you have to weather the annoyance because you are being ‘difficult’. It depends what you fear most. I don’t envy you but you won’t be the first having to defend your wishes against doctors trying to adhere to gold standards in care where one size doesn’t fit all.
Thank you for your reply. Im finding it a very difficult decision to make and keep turning it over and over in my mind. Would have been so much easier if I had the chance to have the dexa scan first.
Indeed. I refused any meds until the scan and there was much eye rolling. Turned out my osteopaenia wasn’t enough to make the case for meds strong enough. I never heard the last of it though. I have yet to find out if the gamble has paid off enough. At least I didn’t have anything pre-booked that had to be cancelled. My sister had the infusion x3 and was fine as have others on here, so a grim experience isn’t assured.
I have met eye-rolling - from the rehab dept osteoporosis expert. But I just told her she needn't both spending her weekend worrying, I wouldn't take a bisphosphonate until I was shown it was need. That was about 3 years ago I think - this year she exclaimed at my dexascan result, had never seen such a good result from someone on pred. I was even minded to give in if she was insistent!
Personally, I would not have it without the results of the dexascan.
Do you take vitd3 and calcium tablets?
My husband had osteoporosis and was prescribed alendronic acid and d3 and calcium.
He hardly ever took the AA but religiously took his d3 calcium. At his last dexascan he was told his bones were now normal and to stop taking the alendronic acid! I also only had 3 tablets of AA and with d3 and calcium my bones are now normal density.
Thank you for your input. I was hoping to do exactly that but the Hospital booked the 2 appointments together to save me having to go there twice but they did know my thoughts.
Yes I religiously take Adcal twice a day and I had what they call a loading 6 week dose of Vitamin D as I was very low. I also eat dairy and plenty of oily fish in an effort to help.
I’ve had Zolendronic Acid Infusions but for a different reason, it was part of my adjuvant treatment following Chemo for Breast Cancer but it was totally unremarkable, in fact l thought they’d forgotten to add it to the infusion as there were no side effects at all. But l suppose following Chemo not much really bothered me 😉
Thank you Mrs Nails that is very reassuring. Im so sorry that you had to cope with Breast Cancer and Chemo as well as everything else, it must have been very tough.
I have continual arguments with the GPs at my surgery about bisphosphonates and I point out my Dexascan results which were very good. Last Friday was the most recent one. I suppose at least you are having a Dexascan although it looks like you may not be able to use the results against your rheumy immediately, but you never know.
I was in very much your situation, I could not take AA and was told I needed some bone protection so perscribed a ZA infusion. I asked about a dexa scan but was told one wasn't necessary and this was the only way to be sure my bones were safe. I wasn't as strong as you, mainly because my mother was very near to death at the time and I didn't have the reserves to fight back.
As MrsNails said you feel nothing and I was fine the next day. The only possible side effect that it could have caused was dry mouth, but I have no proof.
The one thing that it is worth being aware of is that it can instil panic in some dentists. I had been warned to have my teeth checked before the infusion, but was given no indication that it would effect my dental treatment afterwards. Some research shows that it can cause bone death in the jaw after invasive treatment in a very small number of cases. This has meant that I have just waited 18 months to have a tooth out, he preferred to give me antibiotics for the infection rather than risk extraction. This nearly 4 years after the one infusion, I didnt continue the treatment.
I have had two teeth out since the infusion without any problem but it is something to be aware of if you have dodgy teeth like mine.
Incidently when I did get a dexa my bones were excellent and I hadn't needed it in the first place!
Thank you. Good to know your bones proved to be excellent so that you were able to make the right decision going ahead. I have been to the Dentist which proved to be a real pain in my pocket as he says I need a heavily filled tooth crowned in case it doesn't last as he wouldn't be able to remove it after treatment, also a small filling - just under £1000.00!!!!!!!
I took AA for 3 months, but my body never got used to it! Always gave nasty stomach pains! Then I had five months off. Got back to discussing it with my doctor last week. I am vulnerable for additional health problems so don’t want to go near a hospital, if possible. However, I’m going to try one of the alternatives...sometimes I get side effects from one drug, but don’t get them from a very similar drug, or one made by a different company...guess the formulas vary a little. First tablet trial this week, so sorry I can’t help more. But no signs of trouble so won’t have a dexascan, but will try something just in case I do have an issue. Diagnosed last December now reducing from 16mg & I’m down to 6mg at the moment. If I cannot tolerate the new tablets then can I have a dexascan, before other treatment as it may not be necessary. New tablets just say Risedronate sodium film coated tablets, 35mg.
I spent a long time researching this and decided not to take as I was worried about side effects, it although Rheumatologist not happy about that, I take calcium/vitamin D and have increased exercise (not always easy) and my last Dexi scan showed a very slight improvement.
It’s a difficult but individual choice - research it and also speak to your dentist about it (it can affect your teeth and jaw)
Having had really bad experience with some side effects still ongoing after Prolia (denosumab) then actonel (risedronate) I would be waiting and reading as much as possible about these drugs. There is no immediate rush as some Drs imply. If you do go ahead maybe go for oral first as you can stop if upsetting you whereas if taken by infusion they remain in you for a year. Look at taking vitd3, magnesium and vitk2 and get your calcium from food and increasing your exercise as much as possible to help strengthen your bones.
Thanks everyone, just to let you know that you gave me the confidence to contact the Hospital this morning and delay my infusion appointment for several weeks. I am going ahead with the Dexa Scan as planned and if it gives good results I have decided not to go ahead with the infusion. This is what I had hoped for all along but it can be hard to get that through to the medics.
Thank you Scats I can't tell you how much happier I feel now, its such a relief to me to know what direction I'm going in rather than be a lamb to the slaughter.
Hi. I’d like to endorse those saying refuse the infusion until you have your dexa scan results and if they are reasonable don’t have the Zolendronic.
I was in a similar position last March. Being expected to have the infusion without having a scan. I did question the sensibility of it as I had another newly diagnosed illness. I was assured by both my rheumatologist and oncologist that it would be fine.
I gave in and had a horrendous reaction within 12 hours. Outcome was I nearly lost my sight in one eye and lived the next 6 months feeling awful. Fatigue, depressed, blood red painful eyes and generally unwell.
Now over one year later feeling fine apart from ordinary pmr symptoms!!!
It’s not going to be taken away from you all together if you delay until you know whether it’s really necessary. No harm waiting for scan results with discussion on those first. If they show your bones really need it then maybe it’ll be worth having it. But only if essential.
I have given you just my experience but have seen many on here saying they were fine.
Thank you for sharing your experience which must have been scary and awful for you. I did read that is one of the possible side effects. Thing is the medics tell you that "you would be unlucky to get side effects" but as far as Im concerned its still a big gamble which is only worth taking if you need it.
Glad to know your feeling fine now, long may it last.
I too was unable to take Alendronic Acid and was offered the Zolendronic Acid infusion. Since the former gave me terrible bone pain and the first side-effect on the list for the latter is bone pain, I was afraid to have it. I have osteopenia but the endocrinologist treating me said that he would not be offering me any of the above treatments if I had not been taking Prednisolone. Therefore, I decided to try an alternative to AA - Risedronate Acid - which the sister of one of my friends (who could not tolerate AA either) was able to take. I reckoned that I could at least stop the treatment if I got bad side effects, which I would not be able to do with the infusion. I am happy to say that, having taken Risedronate now for 5 weeks (once a week) I have no problems with it (as yet anyway). I understand that it is not quite as potent as the other two but I'll take that.
Thank you, I have exactly the same concerns. Had a quick look at Risedronate Acid and will enquire about it but doubt it will be suitable for me as I have swallowing problems. The Rheumy told me that some of the tablets are the size of flying saucers! So glad it has worked for you though and I'm keeping my fingers crossed it will come right for me too.
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I'm new and would love to hear your thoughts
L1 = -3.0, L2 = -2.5 Have been prescribed Alendronic Acid but I am really concerned about taking it. Need advice/shared experience. 
Has 3 years on Prednisolone caused all these problems? 
Alendronic Acid
