⁹Zoledronic Acid Infusion

[Calciumgirl]

In a nutshell,I'm 58 and felt last August to be in the best of health. I had never felt more fit and well.At my allotment I had an accident,breaking my humerus so badly ,that I needed a reverse shoulder replacement ,You then get told by medical professionals that you have had a "fall" and consequently are pushed down a pathway to see a fracture nurse because of your age etc. I was on no medication at all.After being very borderline for a DEXA scan,I was able with a bit of a push from me to get one as both my parents have osteoporosis.In November I was told that I have very bad osteoporosis in my spine with two vertebrae scoring 3.3 - About 15 years ago,I was diagnosed with a prolapsed disc at the bottom of my spine.I'm wondering now if this was the start of osteoporosis. I was never offered HRT and daftly,having no major symptoms I carried on as normal.I had a Zoledronic acid infusion in December and since then my Calcium and Vitamin D blood levels have dropped.They were well within normal range before any treatment.They are starting to rise again but a recent test states my parathyroid score is through the roof.I am due to see my GP in three weeks to discuss this.I've read online that this can be a side effect of the infusion which I didn't want to have but was told it was very important for my bone health.I feel stressed and out of control regarding my own health.Can someone please help me process all this.I've gone from feeling my best self ,taling no medication to being pigeon holed as "and old lady"

[Ridgewaygirl]

Your journey sounds very similar to mine and I know how you feel! It is horrible to be catapulted into a world where people think of you as an old lady 😡

I am 60 and tripped in a field in August and broke both bones in my wrist and a dexa scan showed lumbar spine scores of -3.6. I am due to start on Romosozumab shortly.

Like you, I am fit, was on no meds (last prescription in 2014) and had no idea there was any problem. Now my children talk about me having had a fall (I think I fell over) and my husband insists I take a phone when I go out walking now. And for a while I felt nervous of falling over again - fortunately the memory of the pain has faded now and I have recovered my confidence.

Your reaction to the zoledronic acid infusion must compound the sense of things spiralling out of control. It might be worth talking to the ROS nurses, given the wait time before you can speak to your doctor. I have felt reassured by the fact that many people (young and old) are on this journey too, there is so much medical knowledge and the ROS seems incredibly supportive. I hope things improve for you soon!

[Calciumgirl in reply to Ridgewaygirl]

Thank you so much for this.I was initially offered what you are having - Romosozumab by the fracture liaison team as two of my vertebrae are scoring 3.3. Two others above are scoring below 3.As a mean figure,I fall below,I'm told, the criteria for your treatment so they changed their offer to a Zoledronic acid infusion. .I am sure,this is cost related.I,too, have had the same comments from my family and husband and I am screaming internally at what is happening to me. I had an accident that if I tried to do again,I would fail to do,not a "fall". I have put a call in to the fracture liaison team and waiting for a call back for some guidance and reassurance but your suggestion to speak to a ROS nurse is a good one.I didn't realise I could do this.Is there a number to call ?

[Ridgewaygirl in reply to Calciumgirl]

The contact details for the ROS nurses are here

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

Good idea to call Fracture Liaison clinic - the people at the one at my hospital have been really helpful. I hope you get some decent support soon.

[Calciumgirl in reply to Ridgewaygirl]

Thank you

[Armagnac]

If you haven’t seen a rheumatologist pester the GP to refer you. It is obvious from this forum that most GP’s don’t have the expertise. Good luck.

[Calciumgirl in reply to Armagnac]

Thank you for this.Can I ask what a referral to a rheumatologist would be for ? I want to have as much information available to me before I see my GP

[Armagnac in reply to Calciumgirl]

I just think a rheumatologist is better qualified than a GP to get the medication right. If I had seen a GP they would have said I did not qualify for Teriparatide. As it is I saw a rheumatologist who said the right drug for me was Teriparatide. At that time I had to pay. This is just an example. Unfortunately the NICE guidelines are very often detrimental to the patient.

[Calciumgirl in reply to Armagnac]

Thank you for this.I will mention about a rheumatology referral when I see my GP.I think many of us seem to be pushed down a certain pathway which may,as you say, not be right for us all.

[Armagnac in reply to Calciumgirl]

I should have said I cannot comment on how good or bad the Fracture Liaison Service is. I’m not in an area where it exists. They may have rheumatologists but I have no idea.

[Zumbablue]

Zolenodronic acid didn’t agree with me and I went on to daily injections of teritetripede. After 2 years I am now on 6 monthly injections of Denosumab. No side effects after the first. Second due in May. Fingers crossed that this is equally uneventful. I think it’s trial and error to gindythe course that suits each individual. Best of luck.

[Calciumgirl in reply to Zumbablue]

Thank you for your reply.I feel totally out of control with my health as this infusion seems to have totally upset the equilibrium of my body.Part of me really regrets having my infusion. didn't want it and was very nervous about having it,but I was told how important it was for me to have it and we do listen to those advising us so I shall see how it goes.

[Zumbablue]

The after effects didn’t last. I can’t remember how long I was suffering but there is a light at the end of the tunnel.

[ROSModerator Partner]

Hi Calciumgirl ,

We just wanted to pop in to wish you a warm welcome to our community, thank you for joining us here Receiving a diagnosis can bring up lots of questions and concerns for us so it makes so much sense that things might feel overwhelming at this time for you.

As other valued members have mentioned, we have lots of information and support on our website, and we have a helpline of friendly specialist nurses who could chat things through with you: theros.org.uk/information-a...

We also really hope you can continue to connect with others in our community as it can make such a difference being around people who really understand what we're going through.

Wishing you the very best,

Lulu

ROS Moderator

[Rhubarbtr]

the way they go on like you’re an old lady is awful. I’m similar to you and they force me to go to the dept of geriatric medicine. They made me get weighed on a wheelchair scale and they gave me a video of 90 year olds doing ‘exercise’ ie trying to lift their leg. One of them tested my grip to see if I’d lost it! so just to show her, I practically took her hand off and carried on squeezing really hard for ages. I just ran a marathon and I am way fitter than these patronising medics. If any are reading, just stop it. Don’t treat fit mature women like 90 year olds. 50 is 40 years less than 90 - same gap as age 10 is from 50. Rant over!

[Calciumgirl in reply to Rhubarbtr]

I agree it makes you very angry,indeed.It has made me realise how people with disabilities and the elderly feel when they are patronised on a regular basis.I feel we are being pushed down pathways at a rate knots in a direction we may not want because they frighten you silly with phrases like " you don't want to break your back".Because of my Zolendronic infusion my perfectly fine calcium levels before,dropped but are now on the rise but my parathyroid score has risen from 4.5 to 11.8 and this is again,because of the infusion,I'm guessing .I hope it all settles down but it makes me wonder if I should have had the infusion at all.GP appointment on 4th March to discuss blood results