zoledronic acid infusion

[Radars]

how do they do the infusion do they stick a needle in your arm.

[MyStar86]

yes it’s done via an IV drip. They will insert a cannula in your arm and let the infusion flow over about 30 mins. Good luck when is yours booked for? My second one is Thursday 😱

[Radars in reply to MyStar86]

at the moment I am having dental work done, I have a temporary dental crown, I get proper one fitted 1st Feb,and then I have an appointment with the endocrine team on the 7th Feb to see whats what, don't know which one to have first, zoledronic acid or denosumab, I am only 8st so I will have the one which will be better for me.

[MyStar86 in reply to Radars]

I don’t know your health issues but only 40kg a little over 6st and I’m 5ft 6in (very very low bmi) I have Zoledronic acid. They weigh you before the infusion so you only get the amount based on your body weight so it is tailored to you. I don’t know about the others but this improved my spine t score so I’m having the 2nd infusion next week better then the pain of breaking bones.

[Radars in reply to MyStar86]

did you have a choice zoledronic acid or denosumab, I think denosumab would be better for underweight people, what do you think.

[MyStar86 in reply to Radars]

well I’m on Zoledronic acid so I’m not changing now plus after this one it’s only on more to go before I get a break.

Why do you think the other is better for underweight people?

[Radars in reply to MyStar86]

from what I have been reading on Google denosumab is better for being so they say.

[StormyRon in reply to MyStar86]

My endocrinologist didn't weigh me or do anything else - including, apparently, check my preexisting conditions for negative interactions. The result is that I was knocked onto my back for six weeks and still have breathing difficulty three months later.

[MyStar86 in reply to StormyRon]

Oh my goodness that’s awful I have never heard of having an infusion without being weighed first that’s crazy as I’m not much over 6st so if they gave me the same as a heavy man it would destroy me. Next time I would refuse if they didn’t weigh me first!!!! How long was the infusion given over? Have you had your calcium and vitamin D checked as you should 30 days post infusion……how are you now??? Hope you are ok

[Radars in reply to MyStar86]

what part of arm

[MyStar86 in reply to Radars]

where they get a good vein but it’s usually done in the part they always put cannulas……the front part of your elbow. Why are you worried about that?

[Radars in reply to MyStar86]

last time I had a blood test it was hard to find a vein.

[MyStar86 in reply to Radars]

honestly please try not to worry a cannula is different to a blood test to take blood they need a good vein to draw from a cannula just needs to go in there and they are professional at what they do so they are very good at it so please don’t worry.

Also I can read a million positive and negative on all osteoporosis meds and infact all meds for all health issues so sometimes it’s better just to get on and do it vs talking yourself out of it…..just my view if it helps me then I have it basically

[Radars in reply to MyStar86]

do any supplements effect zoledronic acid infusion,

[MyStar86 in reply to Radars]

I don’t take any supplements so I would check with your rheumatologist. What are you taking?

[Radars in reply to MyStar86]

creatine monohydrate, krill oil, d3 k2 mk-7, boron,q10,modified citrus pectin. pomi-t. b12 spray indole-3 carbinol.

[MyStar86 in reply to Radars]

well the vitamins won’t interfere as you have to take calcium and vitamin d whilst you are on the infusions. I don’t know what the other things are but your rheumatologist will be able to tell you if they are ok as they should know what supplements you are taking any as you are meant to say before beint prescribed any medication……

[Radars in reply to MyStar86]

I take the others for my locally advanced prostate cancer, I finished treatment in 2016,I am on 6monthly checkups.

[MyStar86 in reply to Radars]

then I’m sure your rheumatologist should be aware of these and you can tell the nurses on the day of the infusion but I would advise discussing with your rheumatologist/gp before hand so they can check for you however they should all know your medical history so I would hope they had already checked this for you.

How advanced is your osteoporosis just you haven’t started any treatment yet I just wondered what stage you were at in the osteoporosis journey?

[Radars in reply to MyStar86]

I have severe osteoporosis-2.5and -4.1 lumbar spine, and vfa deformity t12.i haven't got a reaumatologist

[MyStar86 in reply to Radars]

Are you based in the uk? Who has referred you for dexa scans and recommended the infusions for you if you don’t have a rheumatologist?? It can only be a rheumatologist that would refer you for the bone infusions and will have reviewed the dexa results.

On the plus side you are only on the border line for osteoporosis as anything higher than -2.5 is osteoporosis and if one area is -2.5 that’s not sever but yes the -4.1 certainly is and would be enough to make me have treatment.

Sorry you have been through so much with the cancer and not now be left with this!! Have you ever broken/fractured anything since the osteoporosis diagnosis?

[Radars in reply to MyStar86]

I am in the uk, my gp referred me for the dexa scan, I have an appointment with endocrinologist on the 7th Feb to see whats what, it will be either zoledronic acid or denosumab, I do have back pain after doing things like housework etc.

[MyStar86 in reply to Radars]

could you ask to see a rheumatologist? Just that’s their main world is the bones they might be better to help you decided and explain the pros and cons of the different treatments? It’s just a thought but mine has been Amazing I’ve been under a rheumatologist since I was 18 as I had osteopenia then so they have monitored me for years. I refused any osteoporosis treatment from 2015-2020 once we knew it was osteoporosis due to my bowel conditions however 2021 I have in as I was due to have a total hysterectomy and after breaking all my ribs I was too scared to leave my bones to get any worse. Yes the side effects are not great but it’s better then a daily pill and you do get past them so I’m sticking to what I know and I will let you know how Thursday goes next week I’ll even take a photo of my arm with the cannula in sp you know it’s ok if that would help you. I’ve had hundreds of infusions with iron and antibiotics and all sorts from my poor health but this one I didn’t even know it was going in so that side is fine. I did have flu symptoms for a week or so after plus bad bone pain (but you get that from all osteoporosis treatment) that did ease off after a week or so. It was more the upset tummy side that lasted with me and the sickness nausea I still have to take anti sickness meds daily since but that’s the only part that stayed with me. My ribs healed and they took over 2 years to heal so I think it’s the infusion that finally helped them mend……we all have to make choices for ourselves but I just did it as I was 35 and thought how much worse they could get being young so I’m glad I’m doing it and being brave enough to go for the second more for my future than anything else as the pain of the breaks will stay with me forever.

[Radars in reply to MyStar86]

I have never heard of a rheumatologist, are you in the uk,my doctor referred me to endocrinologist for treatment.

[MyStar86 in reply to Radars]

not sure how useful this link is but i think it explains: rheumatology.org.uk/Portals...

They cover arthritis and all bone and connective tissue diseases.

Yes I’m based in the UK down in Dorset. I’m guessing you have been sent another route due to the cause of your osteoporosis being cancer related which is why the endocrine side is helpful for you however I found my rheumatologist amazing but everyone had different experiences.

Remember you do always have a choice but I chose to refuse treatment for years due to fear of side effects then broke all my ribs in multiple places I couldn’t even leave the house for over 8months I was screaming in pain so for me I can’t risk going through that again. Like this icy weather I’m so scared to walk around outside I have been but only once the sun has melted it and I don’t want to be feeling so scared at 36 I want my bones to be strong for my future

[Radars in reply to MyStar86]

thanks, I will wait to see what the endocrine team say what's what on 7th Feb,whether zoledronic acid or prolia which is the best one for me.

[StormyRon in reply to Radars]

Ask your doc to check your preexisting conditions for Zolendronic Acid. Then, good luck with it. My reaction over three months so far has been horrific. I can't breathe normally. Reading the other side effects on various web chats, a lot of people have terrible results. I'll never have a second infusion.

[Radars in reply to StormyRon]

what do you mean pre-existing conditions for zoledronic acid, sorry to hear you had problems ,but I will have to have it done with severe osteoporosis, not everyone gets side effects, do you have other health problems.

[Radars in reply to MyStar86]

received a text this morning to say my appointment to see the endocrinologist at the hospital has been canceled, and that it will be a phone call due to the nurses industrial action,I thought I would be having treatment but now just a phone call, God knows why.

[MyStar86 in reply to Radars]

I’m so sorry to hear that but at least this way you can discuss it with them before starting the infusion. You will need to have your calcium and vit d bloods done anyway prior to the infusion to check that you are able to have the infusion.

I am leaving for my infusion shortly so I will let you know how it goes. Slightly worried as last time the infusion was over 1.5 hours and this time they said it’s only 20mins but faster means more side effects so I’m not too happy but I’m unwell anyway with my bowel condition so I’m not looking forward to today given the infusion contains mannitol 😱.

Good luck with the phone call make sure you ask all the questions you have been asking on here as they are better placed to answer from a medical perspective as to what’s best suited for your health conditions.

[MyStar86 in reply to MyStar86]

hi, had my infusion today and it was fine they did it over 20mins and weighed me before hand and did all my blood pressure checks etc. i stayed for 10 mins after whilst I had a flush through and then went home. I went straight to bed as it zaps your energy. My back is killing but it was anyway so we will see how it hits me I’m hoping as it’s the second one it won’t be as bad just have to drink loads as it’s made me very dehydrated. I’ll keep you posted.

How did your phone call go?

[Radars in reply to MyStar86]

well done,it gives me hope when i start mine

[MyStar86 in reply to Radars]

I’ll let you know how I am tomorrow as it was the latter days I had the bone pain so I will see how I go and keep you posted but this is my 2nd infusion. The reason for my continuing treatment is because it has improved my T-score which is why I’m carrying on with them at 36 I don’t want to be afraid anymore and after breaking all the ribs I would do anything to stop that happening again. My first infusion changed my spine from severe osteoporosis to -2.3 which is osteopenia my hips are still bad at -3.3 but it shows the infusion works as I’m very happy about the spine that’s why I will suck up the side effects for the benefits.

[Radars in reply to MyStar86]

yeah thanks,

[Morningdew62 in reply to MyStar86]

hello MyStar86 how are you feeling now after your infusion? I supposed to have one on Friday but still not sure. I don’t have bloods done prior the procedure. I’m so scared of side effects!

[MyStar86 in reply to Morningdew62]

Ummmm well just to let you know if you have any bowel issues I wouldn’t advise the Zoledronic acid…..after having my second one on Thursday last week I regret it so badly!! I was doing ok the second day but the stupid infusion contains mannitol and whatever else it does it’s caused me unreal bowel pain I’m in agony literally screaming in pain!! I know I was a big advocate for it previously but I can’t believe how much pain I’m in it’s really scared me I knew it was bad last time but this is my worst nightmare. I won’t be having the 3rd one next year I’m done this is too painful. I hope it doesn’t affect you like it has me but I have a lot of bowel conditions and pain already so it’s just attacked my weakest area but it’s left me speechless I just want to cry but I can’t do anything about it now the infusion is done 😞

[Morningdew62 in reply to MyStar86]

thank you for sharing your experience. God bless you!🙏 I hope you recover soon.❤️

[Sunseaandsand in reply to Radars]

Hi Radars

The cannula is usually put into the inside of the elbow or the hand.

I have had problems with them despite having good veins.

My last infusion was a negative experience owing to it taking numerous attempts at different sites to get into the veins.

When they had finished with me I was completely worn out and down by it and so opted for Denosumab for my next treatment which is either given in the stomach or the thigh.

This is only my experience so please do not let it put you off in any way.

If you have a choice of which treatment to have my advice would be to go with the one you feel more comfortable with and don’t be put off my others remarks.

We have to try things for ourselves to find out which is best for us.

[Radars in reply to Sunseaandsand]

did you put on any weight on with zoledronic acid or denosumab, because it would help me as I'm only 8st

[Sunseaandsand in reply to Radars]

No I didn’t gain weight with any of the treatments I was on. My weight is under 6 stone, it has gradually gone down with the fractures I have had and I can not now get back to my starting point.

[Radars in reply to Sunseaandsand]

so meds haven't done anything, no increase in bmd.

[Sunseaandsand in reply to Radars]

No weight gain at all. In fact whilst I was having two years of treatment with Forsteo( teraparatide) I actually lost weight.

[Radars in reply to Sunseaandsand]

not good for us who need the weight, I finished my p/c treatment in 2016,been on intermittent with 6monthly psa checks, my testosterone has not recovered that's why I have osteoporosis us small guys look worse with no testosterone.

[StormyRon in reply to Radars]

No weight gain for me with Z-acid.

[jimister]

They put a cannula in your arm and run the drug through an infusion over 15 minutes.

[fraid]

I would hope it’s given in the arm, it would be painful at the other end!