zoledronate advice please

[Samsie]

I’m 65 and never been ill or fallen before and yet was diagnosed with osteoporosis in spine, osteopenia in neck and hip and 4 compression spinal fractures 3 months ago after I requested a DECTA scan due to back pain and osteoporosis being in the family. I am considering zoledronate as my medication and wondered if those of you with experience of this could give me some advice re after effects/ side effects etc… Any questions you think I should ask the zoledronate nurse specialist before I go ahead? Thank you!

[Fruitandnutcase]

Welcome to the group Samsie, with all of those fractures I imagine you must have been in quite a bit of pain by the time you had your DEXA scan.

I would start by looking at the ROS website theros.org.uk as well as looking at the queries posed by other people who have asked questions on this site and generally reading as much as you can about osteoporosis

You could jot down anything that you would like to know more about and you could also make contact with the ROS team.

I like this site too melioguide.com/health-guides/

[Samsie in reply to Fruitandnutcase]

Thank you so much.

[Coulby]

Check with others before making decisions on my experience. I'm similar to you it seems..I was offered ZOLEDRONATE INTRAVENOUS and I accepted it.

In my experience I wish I hadn't.. I'm having more bone pain than before and was quite unwell after the infusion.

I have a lot of health issues which could have contributed to this so before taking my comment on board please read that of others on here..

I really wish you well 🌻

[Samsie in reply to Coulby]

Thank you all.

[t1gernidster]

I’m with Coulby on this one. I came close to have a zolendronate infusion but I read a lot of information on here and that made me reconsider. I take supplements and exercise but the thing that has swung it for me has been HRT which my GP was happy to prescribe and which I have had for some years now. I am 75.

[HampshireELM in reply to t1gernidster]

Hi t1gernidster. Are you in the UK? I'd heard that the guidelines in the UK are that GPs can prescribe HRT between the ages of 50 and 60. I'm over this age but am about to see a GP about having it. Did you have any issues getting it prescribed for you? This would be my preferred option (I think) rather than having a bone med (zoledronate is the one being suggested for me).

Thanks

[t1gernidster in reply to HampshireELM]

I am indeed in the UK. It was actually my GP who offered it so me. She is very keen to do all she can for me as regards my osteoporosis. It’s definitely worth asking about it. I have to take lansoprazole for my stomach problems which is contraindicated so it offsets that.

[HampshireELM in reply to t1gernidster]

Thank you! That gives me hope....

[Enders in reply to t1gernidster]

Could I ask how old you were when you started the HRT and whether you had any side effects? Thanks

[t1gernidster in reply to Enders]

I was on it when I went through menopause probably for about eight years without a problem. I hated coming off it. My GP offered it to me when I was seventy and I’m still on it at seventy five. No side effects at all. I think it saved me when I first had it as I was later diagnosed with hyperparathyroidism plus I have been taking a PPI for twenty years.

[superbones]

I am about to have my second infusion after not being able to tolerate the tablets. I had no real side effects after the first one - maybe a bit more tired than usual for a bit. They say to drink a lot of water before and after - say a pint each time. I think it was right for me and you have to remember that most of the comments on here are from those who have had a negative experience. I have upped the exercise and now do a weight gym class which surprisingly I love. I would love another DEXA right now but know that I have to wait until after the 3rd infusion next March. Everyone I know who has had an infusion has been positive about it. Hope this helps you.

[Samsie in reply to superbones]

Big thank you! I’ve read up about it and feel there’s less negativity about it than other meds. Thank you for your wisdom.

[Boneness]

I tried this originally but could not tolerate Zoledronate as have acid reflux.

[Gala123]

both my sister and my mother were on zolendronate infusions and did not have any issues. But everybody is different and you would never know unless you try.

[Samsie in reply to Gala123]

Thank you for this reassurance!

[nutnibbler]

I'm about to have my 8th zoledronic acid infusion and have never had any problems with it or side effects from it. I'm 75 and do all the ROS recommended exercises as well as exercises with weights and pilates. It's never been suggested that I take HRT, probably because I've previously had cancer. I hope this helps with your decision.

[Samsie in reply to nutnibbler]

Thank you! Are the exercises you do safe for those of us with spinal fractures? I have wondered about Pilates but am unsure if it is safe re. Fractures?

[Gala123 in reply to Samsie]

ROS has great advice on that including videos. I would recommend visiting their website and also calling their helpline for advice. They also have specific information leaflets that you can download or request to be sent to you by post. You definitely can exercise but would need to know what modifications may be needed. Plates is great but again there are some modifications.

[Samsie in reply to Gala123]

Thank you!

[HampshireELM in reply to Samsie]

Hi. As well as the ROS website, it's worth looking up Margaret Martin's Melioguide and Lisa Moore on Facebook and YouTube (look up Brick House Bones) as they both have good advice on what to do and not to do.

[Samsie in reply to HampshireELM]

Thank you

[Samsie in reply to Samsie]

Does anyone know about the acid in rhubarb and spinach which might work against the benefits of taking high level calcium meds?

[brobat in reply to Samsie]

Hello Samsie. I have heard about this. I don't know the science behind it, but have avoided these two just in case! I don't feel too deprived!

[Samsie in reply to brobat]

Thank you!

[nutnibbler]

I totally agree with Gala123. The ROS exercises are designed for people like us. You will learn a great deal from visiting their website and/or ringing the nurses on their helpline. Good luck!

[Samsie in reply to nutnibbler]

Thank you both!

[Deb967]

I had Reclast back in November. I was fine till 12 hour later. I passed out no warning and hit my head hard. Started trembling then freezing and shaking. Next day had fever for 3 days and all the flu symptoms. Dr said No more Reclast.

[Hairoil]

Hi. Just to say I am on my second lot of infusions using zoledronate and had no problems at all. I have infusions as I could not take alendronic acid. My hips have improved over time though my back is the same. I was told by the consultant that infusions seem to be better for hips. I had three year infusions then a break and have just finished the second lot. I am 71. Good luck to you an yes take all the advice you can.

[Samsie in reply to Hairoil]

Huge thank you for this really reassuring information!

[ROSModerator Partner]

Hi Samsie ,

Welcome to our community, thank you for joining us here As some of our members have kindly noted, we have lots of information and support on our website that might feel helpful for you at this time: theros.org.uk/

Also, we noticed you had some questions about effects of certain foods, we do have a food factsheet about food and bone health that may be of interest: strwebprdmedia.blob.core.wi...

Really hope you can continue to connect with our wonderful members and get the support you're looking for

Wishing you the very best,

Lulu

ROS Moderator

[Samsie in reply to ROSModerator]

The factsheet was really helpful. Thank you!

[Calciumgirl]

Hello.I have only recently joined this forum which has proved to be helpful,already.I was pushed down the pathway of having Zoledronic acid after breaking my humerus very badly last summer and a subsequent DEXA scan showed that I have osteoporosis in four of my vertebrae.I was very anxious about having the infusion in December last year and in some ways,I regret my decision.You are told about the serious side effects like jaw problems and possible femur fractures but in my case,since the infusion, my very good calcium and vitamin D blood levels pre infusion have been affected and a subsequent blood test showed below normal calcium which has started to improve but I have a significant elevation in my parathyroid levels.After some investigating,both these issues are a result of the infusion.I have at my doctor 's suggestion a "non urgent" appointment on the 4th March to discuss.I have gone from being very healthy to overnight,it seems, being pigeon holed as a woman who has had a " fall ", No,I had a severe accident.I am hoping my blood levels resolve themselves as it is early days- fingers crossed.Good luck with your decision.