Appointment for infusion

[Longtimer]

Just got a phone call from hospital to book me in for Zelondronic infusion. Thought I would write this because right from the start she said, "I am not medically trained,but will help you all I can with questions, the doctor will answer on the day, I will send all the details to you".......what did surprise me was the infusion only takes 30 mins!........she was very honest and helpful.....just hope it's like that on the day!

Having it in September.....supposing it's ok with adrenal suppression....

[SheffieldJane]

That’s nice. Let us know how you adjust to it? X

[Longtimer in reply to SheffieldJane]

Thank you, will do, must be honest, not looking forward to it, I react to just one paracetamol!.....but needs must as they say. How are you at the moment?

[SheffieldJane in reply to Longtimer]

First mention of Osteopenia in my latest DEXA scan results. Actual numbers withheld (why?). Good luck Longtimer. X

[Longtimer in reply to SheffieldJane]

Thank you x

[yogabonnie in reply to SheffieldJane]

tell them you would like the numbers!!! and Bravo. that is amazing and great. (I know it might not seem like that to you , but I'm calling from osteoporosis! ...osteopenia is nothing! and usually around 55 years old or something. wow!

[SheffieldJane in reply to yogabonnie]

Golly thanks! 😊

[PMRpro Ambassador in reply to SheffieldJane]

All depends on where the numbers lie! Osteopenia can be almost normal or almost osteoporosis and anywhere in between. After the age of 30 or so bone density falls very slowly - hence the "normal for age" sort of comments.

[MrsNails]

It’s no problem - are you going to the Hospital? That’s where l had mine with peeps having blood transfusions etc. about 30mins is about right - they set up a small IV Butterfly in the back of your hand & start a small infusion bag, then add the Zolendronic Acid - then they do a flush with another bag of saline & that’s it…..

It was totally unremarkable for all six….

Good Luck 🍀

MrsN

[Longtimer in reply to MrsNails]

Thank you for that, most encouraging....I always had reservations about it because all Biophisphonates I had tried in the past (by mouth)....had given me so much chest pain.....so had to stop. The infusion has been tempting, but always thought, once infused, that's it...can't stop it!....but my latest DEXA readings had got 10% worse so I must do it....I'm hoping for unremarkable!....🙏

[MrsNails in reply to Longtimer]

I never really got in with Alendronic Acid it hurt my chest too but as l said - No Problem 😉

[Longtimer in reply to MrsNails]

Fingers crossed...yes, going to local hospital....

[Longtimer in reply to MrsNails]

Silly question but.....I have now received my letter explaining everything about the infusion....it says bring along a printout of my medication.....I have rung them a couple of times...no reply. How did you obtain the printout...from GP?.....

[MrsNails in reply to Longtimer]

How did you order your Repeat Prescriptions? Do you not have the other half with the details on it? Or if you order online you can print it off from there…..I always take a copy whenever l go to appointments incase l forget any 😉

[Longtimer in reply to MrsNails]

Yes, I g onto GP's website and order, will print that off then....thank you......

[MrsNails in reply to Longtimer]

Always worth keeping on to hand 😉

[Longtimer in reply to MrsNails]

Yes 👍

[Chia123 in reply to Longtimer]

I have had two infusions now of zolendronic acid. I have had both at home and absolutely nothing to worry about.

[Longtimer in reply to Chia123]

Thank you, glad you were ok....

[yogabonnie]

she sounds lovely and best of luck to you!!!

[Longtimer in reply to yogabonnie]

She was, very unlike those that are being posted on here....very honest and helpful....

[yogabonnie]

also may I ask what your Dexa scores are? that you need this?

[Longtimer in reply to yogabonnie]

Will look for them and let you know, but not good!....I have Osteoporosis.....How are your readings?

[yogabonnie in reply to Longtimer]

FINDINGS:RESULT LUMBAR SPINE

L1 - L4 BMD: 0.806 g/cm2

T-Score: -3.1

Z-Score: -1.4

Comparison to most recent scan 2019: - 6.4%

RESULT RIGHT Femoral neck

BMD: 0.754 g/cm2

T-Score: -2.0

Z-Score: -0.2

Comparison to most recent scan 2019: - 0.65%

RESULT FOREARM

Right Forearm BMD: 0.596 g/cm2

T-Score: -3.3

Z-Score: -1.1

Comparison to most recent scan 2019: + 4.4%

[yogabonnie in reply to yogabonnie]

I have never broken a bone, however.. so holding on to that. And fell in bike/car accident hard..and also playing volleyball (sort of). hard and both times didn't break anything. (not that I advise FALLING to see how bad the bones are! haha. )

[Longtimer in reply to yogabonnie]

I don't have such detailed results as yours but this is what was sent to me recently. Spine...-2.7 to -4.0..with an average of -3.3....left femoral neck t score.-1.9...it then says there is a drop of 6.3% for the hip, 10% for the spine since last scan......about 3/4 years ago....

[yogabonnie in reply to Longtimer]

have you ever had a fracture in your spine or broken a bone as an adult?

[Longtimer in reply to yogabonnie]

Never, and hoping it stays like that!

[yogabonnie]

I am just so leery of the medications they give. that I haven't taken any. I exercise a lot and need to do more. my bones got worse when I stopped exercising (tap and heel drops) during covid, stupidly. Now I am going to give it my all and see if I stop the decline!! before agreeing to any meds. (which doc advised.)

[yogabonnie in reply to yogabonnie]

I say, while lying here on the couch!!

[powerwalk]

Good luck. Let us know how you go. I too am very bad with meds so interesting to see how you get on with infusion.

[Longtimer in reply to powerwalk]

Will do...thank you

[Sho-Sho]

I had my first infusion just under a year ago - like you never got on with aledronic acid so stopped but after a DEXA Scan showing severe osteoporosis having been on steroids for 5 years & now with secondary Addisons, I was very anxious about having a zoledronic infusion, but the consultant pushed v. hard for me to have it. I was so anxious but it was a coddle - 30 min all done & lovely nurse advised me to drink plenty of water after to help flush it through - absolutely no side effects. Just waiting for my next appointment, fingers crossed that the hospital can do it with such chaos going on.Good luck.

[Longtimer in reply to Sho-Sho]

That's good you were ok, and encouraging.....we are all different, but I like you know it has to be done....hope you hear soon....

[Pollyanna16]

Hi, I had my 1st infusion (rather reluctantly) March 2020 which was unremarkable but did have headache & back pain the following night. The 2nd one, this year, was a breeze. No after effects at all! Also have adrenal insufficiency & awaiting results of 2nd synacthen test ( the last one was 5 years ago). All the best xx

[Longtimer in reply to Pollyanna16]

We all struggle through these things together, so good to hear others in the same situation.....Hope your results are ok....and have risen!......let us know....thank you

[AnniesRyder5]

Hi longtimerI had my first infusion last year and it’s absolutely painless

To think they can transfer calcium from your blood to your bones - amazing 😊

[Longtimer in reply to AnniesRyder5]

Yes it is...fingers crossed!...good you were ok...

[suenewberry in reply to AnniesRyder5]

the infusion should help you a lot as back fractures are very painful.

The infusion will stop your bones losing any more calcium.

[Longtimer in reply to suenewberry]

Yes, hopefully, have tried the natural way, prunes, k2 etc, but not working for me....thank you...

[Nominem]

I also had an infusion a few weeks ago and it was quite painless.

[Longtimer in reply to Nominem]

I don't worry about the infusion itself....it's the possible after affects!....but after reading the replies on here...not worried now...

[DAW28]

I had Zolendronate infusions once a year for three years with no side effects. Mrs Nails has described the process beautifully. I wish you well.

[Longtimer in reply to DAW28]

I agree thank you. After having g three, do they give you another scan to see if things have improved?....

[DAW28 in reply to Longtimer]

I had the infusions in 2012/2013/2014 and had 4 Dexa scans, the last one during the time that I was having the infusions. I don't know what my scores were. However, as a crude judgement of the state of my bones, I took myself to my back bedroom during the night as it was so hot in my bedroom. I awoke as I had fallen out of bed and landed with a thump on my left hip on the floor. Happily no bones broken, not even a bruise. Hope this helps!

[Longtimer in reply to DAW28]

That's good to hear!.....👍

[Omanain]

Like you the tablets gave me terrible acid and pain. After the first transfusion I had a bit of acid that evening but nothing terrible and it soon cleared. After the second one, a year later, I had no problems at all.

[Longtimer in reply to Omanain]

That's good thank you...

[Rosbud]

I had Al bad reaction to Zelondronic infusion but yes it does take about 30 mins , I will say that because I hadn’t had A blood test to check my liver , I had to have one done before infusion could commence and that took 90 mins , so please be prepared aand I really hope it works for you x

[Longtimer in reply to Rosbud]

If you don't mind me asking, what was your bad reaction?... Hope it didn't last long!......I was told 30 mins to chat and prepare first, 30 mins infusion, 30 mins to stay after....x

[Rosbud in reply to Longtimer]

I spent a couple of weeks really not knowing if I was standing up or sitting down , worst weeks I’ve ever had x

[Longtimer in reply to Rosbud]

Sorry to hear that, suppose you didn't have anymore!....Thanks for telling me....

[Rosbud in reply to Longtimer]

No , have been changed to Prolia Injection twice yearly and no side affects at all x

[Longtimer in reply to Rosbud]

That's good that it suits you...we all react differently to these medications, tablets, injections or infusions....

[Tiredofpmr555]

All of my doctors have been pushing bisphosphonates since I was 60. I was turned off when I found out that they were used for many years to keep machinery from rusting before the medical field decided that we needed them.Still refusing to take them at age 87 and hoping I made the right decision,

[Longtimer in reply to Tiredofpmr555]

The things we learn on here!......I wonder which ones they were....

[Kiwisufferer2019]

I just had my third eclasta infusion 2 weeks ago, no problems, just drink a lot of water, to protect your kidneys. Am down to 9.5 pred after the slow taper of 5 weeks, sore thigh muscles and back to headaches, but determined not to deviate. Will stay at 9.5 for a few weeks till things settle down.

[Longtimer in reply to Kiwisufferer2019]

Thank you, good you were ok. Don't ignore symptoms if they get worse, you don't want a major flare....

[Kiwisufferer2019 in reply to Longtimer]

No you're right, I won't be silly about it, not worth it. Good luck to you.