Hello all.👋👋👋👋..am FINALLY getting on with these bisphosphonate infusions for osteoporosis. I should've started last winter. The delay was due to iffy blood tests (bone marrow related results) causing rheumatology to refer me for immunology investigations. So, am revisiting the advice I had earlier...and wondering if you all would please remind me how to best prepare for this and cope during + afterwards. e.g. one bit of pre-infusion advice stressed in my hospital's appt letter, is that I drink 2 large glasses of water beforehand. My infusion starts at 11:30...am trying to figure out when best to do all that drinking...
🍀🌻 coco
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As I've had the Zolendronate Infusion myself I can reassure you that the hospital will give you paracetamol or an anti inflammatory if you can take them before it starts to help with the aches. Take a book or magazine to read. I think it takes 1/2- one hour to do so not too long. As your appointment is 11.30 am you have good chance to drink before you travel to the hospital depending how far you are away.
We all respond differently to these drugs due to our chemical make up and other drugs we're taking so you may or may not get the side effects. Follow the guidelines given in the infusion booklet for afterwards and fingers crossed you'll be fine. I'll be thinking of you and hope it goes well. X
I'll pass on the advice I give my patients. Before you have your Zoledronate they will have checked your electrolytes to ensure your kidney function is ok in relation to your creatinine and eGFR...filtration rate, they will also check your bone profile to check your serum calcium. As long as these are ok they will go ahead.
Misty is right it takes about 30mins although it can be infused over 20mins safely.
Obviously they will infuse the whole amount but your system only takes up 61% so your kidneys need to get rid of the other 39%.The better hydrated you are the quicker this will happen and the less likely you are to suffer side effects ie bone/joint pain and headache and nausea.
I advise my patients to start their hydration the day before their infusion by encouraging them to drink what they normally drink and add in 2-3 extra glasses of water and then encourage them to also do this for the day of their infusion and also the two subsequent days.
With regards to paracetamol, for it to be effective it needs to build up in the blood stream, so again start this the day before the infusion start taking 2 paracetamol 4 times a day ie breakfast, lunch, teatime & bedtime and continue this for the day of the infusion and the 2 subsequent days. This regime will either stop any horrible side effects or greatly dampen them down.
Also remember that Zoledronate has the potential to lower the blood calcium so ensure you take your calcium & Vitamin D supplements (unless you have hyperparathyroidism which gives a raised calcium and then obviously you can't have calcium supplements ) and get your electrolytes and bone profile checked 2 weeks after your infusion.
YIKES Karula: you are HOT on this: am feeling: JACKPOT: whenever I encounter a medic who I feel communicates from both the heart & the mind I want to CHEER👏👏👏👏Thanks so much...it's especially encouraging when professional advice like yours matches expert patient advice from friends like misty
yes, my bloods have been checked thoroughly and everything (inc the aspects you specify) is ok so I have a green light re this infusion. And last week my specialist lupus nurse passed on instructions from my head of rheumatology to start taking calcichew D3 on prescription from my GP. I'll start the paracetamol regime today...and up the hydration (I'm already so into hydration though, that it's hard to imagine more could benefit me...my sjogrens is almost more active than my lupus, so am into water supping)
Tomorrow I'll make that GP surgery bloods nurse appt for 2 weeks on. Please would you have a mo to remind me what tests constitute bone profile (I think it's immunoglobulins, serum electrophoresis ...? I have early onset hypogammaglobulinaemia G, A, M and have been having these tested for monthly since Feb)
I am sure all will go well and hope you have minimal neg affects. Take care buddy. PC in for repair so on borrowed phone .Hopefully back to messages and email next week.
I had my first infusion in March it was I was in and out within an hour the infusion took 15 minutes the rest was just making sure I didn't react to it. I had no side affects at all. Good luck hope it goes as smoothly as mine
I had the infusion 18 months ago, in NZ we have it every 2 years. I was told to sit in a very comfortable easy chair, the lure (?) was inserted painlessly. I accepted an offer of a cup of coffee, drank it while reading. It does not hurt at all, the procedure takes between 20-30 mins, mine 20.
Everyone: you're GRRRREAT! This morning I feel totally ok and properly prepped for the infusion today. The decision to go ahead has been on hold for over 10 years while my underlying conditions were identified & investigated + treatment begun. Now I am, I guess, 95% calm about the possibility this bisphosphonate treatment can set me up for an ehlers danlos cardiac/vascular episode, and/or a flare of the chronic osteomyelitis in my upper jaw/sinus: if these do act up, my medics are ready & we'll deal with this stuff. The benefits of these infusions are worth the risks, we've decided. Thanks again to you all👏👏👏👏XOXO
Morning Barnclown. Im sure all will go well today for you. Im glad you've got your calcichew to take. The Bone profile you asked about is checking calcium, corrected calcium, albumin, total protein & alkaline phosphatase making sure the Zoledronate hasn't lowered the calcium levels etc in the blood as Zoledronate works on the osteoclasts by stopping them breaking down bone so it prevents calcium being reabsorbed from the bones into the blood but it can work so well it can lower the normal levels in the blood.....hence taking the calcichew. Taking your Bone profile with your electrolytes is also making sure it hasn't had an effect on your kidneys, if it affects your kidneys your calcium could be either high or low so looking at the two tests together is important but thats why the test is done 2 weeks after the infusion as its a delayed reaction if its going to happen and more likely if your dehydrated hence drink lots of fluids. I am sure you will be fine and the loss of bone in the jaw you mention is very rare and mainly only happens in high doses of bisphosphonates that can be given for other diseases so dont worry too much. I have literally hundreds of patients on Zoledronate for different disease processes and they are all fine. I'll be thinking of you today but I'm sure it will all be good.
You do reassure & inspire me, Karula. Am vvvv grateful. The infusion went fine: all as pleasant as these things can be. Feeling a bit off but nothing to complain about. Will rest up & hydrate, taking this one day at a time. Have got my blood test booked! Thanks so much 👏👏👏👏XO
Glad it all went well Barnclown. Yes keep drinking and keep up with the paracetamol. It can make you feel a bit flu like but that will disappear. Have a good rest this afternoon and evening and don't forget your calcichew this evening....not that I think you will....just the nurse in me fussing!!!
Hello again Karula: Things became slightly more dodgy early this morning: @ 5am woke up to vomit, feeling 4-5/10 achy, feverish etc. Already this morning threw up my 6:30am oesomeprazole tab. Wondering whether I'll be able to keep the rest of my morning meds down. If I can't keep them down, I guess I'd better ask my GP surgery for advice, before I ring our specialist lupus nurse. A bit of a drag. I can tolerate this level of symptoms, but I feel a bit concerned about my meds not staying down (in the morning: hydroxy + myco + pred with breakfast food, now of course there is also paracetamol & calcichew). Well, will take my morning meds now & keep sipping water...just see how things go. Any advice will be vvv welcome XO
Good morning Barnclown. Im sorry to hear you have been hit with the flu like symptoms, this can happen to some people with the first infusion....on the second it is either non existent or greatly reduced.
On the whole its generally nausea that happens and meds etc can still be taken ok, however as you are actually vomiting (which can happen sometimes....it doesn't mean anything is wrong) and you need to take your Lupus meds, especially the pred, I would give your GP a call so they can prescribe an anti sickness med for you....you can get one that dissolves under the tongue so you don't have to swallow it and it works in about 20 mins. Its important you keep up the fluids, calcichew and paracetamol and of course the rest of your meds. Don't be fobbed of with it will subside, which of course it will, you need your Lupus meds to stay down and also you must not get dehydrated. I am sure the GP will help, if not phone your Lupus nurse and she can either write a prescription or she can get the Dr to do it.
Let me know how you get on and again I'm sorry your having a rough, but normal patch with it.
HURRAH: perfect: WILL DO: many thanks! Did take my meds...just waiting to see what happens next. Am feeling ok about this relatively slight reactivity....even more so after reading your advice. 👏👏👏👏👍👌🍀🌻XO coco
Glad your still feeling up beat about it all Barnclown. I hope your meds stay where they should! !! ....if not phone your GP. Have a good rest of the day and im glad ive been able to help a bit...you take care.
You're dear to ask. Things were interesting with my GP surgery, as you'd anticipated. But that worked out ok because the throwing up settled down in response to resting up only eating tiny bits of dry toast (mother's treatment). Yes, the aches/ chills continued, & migraine set in, but my meds helped with that....so I was able to sleep all day. now I really do understand that after the first infusion you can have 2-3 days of flu. Today am still not wanting to eat & feeling pretty rough, but I sense the worst is over. If this treatment works, it'll be worth these few grubby days.
By the way, the GP surgery gave me Adcal-D3 not calcichew. I compared them online: Adcal seems slightly higher dose. The anti nausea med my GP surgery proposes I try if the throwing up returns is Buccastem M, which the GP said I can buy OTC...although she thought the chemist might refuse when he learns the meds am on. Good to know for the future. I had been prescribed this several years ago, but managed without actually taking it...seems to be my pattern!
Your experience and kindness have made all the diff. Thanks again
Hi Barnclown. Sorry for the late reply, I stupidly asked how you were and then went out...so sorry for leaving you hanging...im glad the nausea is settling a bit for you now. ..yes you can feel flu like for 2-3 days after but not everyone so its a shame it hit you....rule of thumb is next time you should be ok as your system will be used to it....however you know us Lupus sufferers things can affect us more sometimes.....I thought you said earlier that you had calcichew....Adcal D3 is good and its what I recommend all the time, either the chewable, soluble or caplets. .... I am sure the chemist would sell you Buccastem as its a smaller dose than the prescription prochlorperazine but fingers crossed you won't need it.
Zoledronate has good fracture prevention data so as you say these few days of annoyance will be worth it in the long run for you.
Im ok....thanks for asking...I'm on annual leave this week so its doing my Lupus good to rest a bit as im a full on specialist nurse with no let up at work which is fine by me but I do need to learn to slow down and accept I need to rest but im like many others on here, swallow the pills and then put the Lupus, sjrogrens, menieres and osteoporosis on the back burner and get on with it....but that actually helps me cope but I am good thanks and im glad ive been able to help you a bit......im sure tomorrow will be better for you.
No prob! And thanks for another grrrreat reply. Yes, had asked for calcichew. Most unlike me not to have looked closely at the box...had a distracted week leading up to the infusion. Glad Adcal is your fav! Your explanations make such good sense and help greatly. Am feeling v lucky you're around. Slept most of the day, but feeling more myself. V much hope you enjoy your leave! It's easy to imagine how glad your colleagues & patients are when you're there. Take care, coco xo
Glad your feeling more like yourself, thats good news and hopefully by tomorrow you will have turned another corner....sleeps a great healer isn't it.....Again im glad to have helped a bit but you've really got yourself through this hiccup. ....you look after yourself and thank you for your kind words and if I can ever help again just shout and I'll do my best if I can.
So sorry to read you've had a rough time with the infusion. I was lucky not getting the vomiting. Hope it has improved. I've just had my Adcal d3 calcium tablets changed to a cheaper one although they say same strength. It's Theicai D3 calcium tablets. You may get them changed too!.
Thanks so much misty! Yes am feeling more myself this morning....actually managed a weak cup of tea! Hoping my bod has adjusted to zolendronate & that it's helping my bones already. That's interesting about your dispensary change of calcium/D supplement! Glad to be aware of this! Take care 💐🍀XO coco
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Hell of a scare! 
Air escaping from eye socket when blowing my nose
