I will shortly be having zoledronic acid, is there anything I need to do beforehand, for my severe osteoporosis.
zoledronic acid infusion : I will... - Bone Health and O...
zoledronic acid infusion
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Radars
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I keep reading that you should drink lots of water on the day itself plus 2-3 days before and 2-3 afterwards.
You’ve taken the words from my mouth Met00. That’s what I’ve heard too.
Good dental hygiene is important during treatment with this medicine - this means that you must brush your teeth regularly and have regular dental check-ups. You should also make sure that your dentist is aware that you have had zoledronic acid, as some dental treatments may not be recommended for you.
It is important that you do not become dehydrated during treatment with zoledronic acid. Your doctor will advise how much water you need to drink - this is usually one or two large glassfuls before and after treatment.
It is useful to be aware of possible side effects. Along with their useful effects, most medicines can cause unwanted side-effects although not everyone experiences them.
be aware of all the side effects - read previous experiences on here - good and bad - before you make up your mind that this is definitely the route you want to take. Some of the side effects may be irreversible.
what side effects are irreversible? I’ve had the infusion before and also waiting to have my next infusion but I wasn’t aware of an irreversible side effects???? Please can you explain
Best to read through the experiences of others on this forum.
that’s not very helpful why can’t you just explain vs trying to scare people
yeah after reading some comments regarding zoledronic acid and side effects, I am beginning to think should I bother.
it’s a tricky one because I have osteoporosis and I’ve had it since I was 29 I’m now 36. I only started the infusions in 2021 and delayed my second infusion till now however I did suffer with side effects but prior to the infusion I had broken the neck of my femur just from running and then I broke all of my ribs on both sides in multiple places from falling out of bed whilst in an nhs hospital as an inpatient. The pain from these injuries is enough for me to such up the side effects because I want to be able to live a normal life not scared due to the fear and memories of the breaks……something I will never forget the ribs took over 2 years to heal and I think they only managed to heal in the end due to the infusion. The infusion also improved my t scores which is why I decided to keep the infusions going. Yes I hate the side effects but the pain it the breaks will stay with me forever and my family……I think half the neighbourhood could hear my screams from the pain.
That’s just my story everything comes with side effects and risks but you have to balance them based upon your own health and personal situation.
There’s a drop down menu of the right hand side of the page where you can find extensive reading on infusions and other bisphosphonate medications. A great deal of very useful information can be found in there, far too much for me to detail.
thank you xx
Hi, hope this helps, my father is receiving monthly zoledronic for prostate cancer on the bonesAs others mentioned, you must be well hydrated before and after infusion, youd also need calcium and vitamin d supplements, it also helps that the infusion would last longer than 30 minutes, others say there is less side effects if it lasts 45 mins to an hour
There is also one rare side effect that i hope doesnt happen to you, in our experience my father gets a cough a few days or weeks after infusion, this isnt dry cough as theres white phlegm produced
You might ask how do we know this cough is connected with zoledronic acid? A few months b4 my dads first infusion i also asked about side effects, majority had none or mild ones, theres this one in particular who said that in their case, upon the first infusion his father developed a cough with white phlegm, then after 6 infusions, his dad only had half of his lungs functioning and was diagnosed wit interstitial lung disease, a little googling would show that this is noted as a rare side effect but definitely they are aware this occurs, we are not sure however if my father has the same condition now but after pausing his monthly infusions, his coughing is defnitly going away
thanks, I have got locally advanced prostate cancer t3b no mo finished treatment in2016 but my testosterone has not recovered that is why I have osteoporosis.
I had my first infusion 3 months ago. I drank about 500mls before I had the infusion and kept drinking afterwards. I would suggest to take paracetamol before you go to bed. I woke in the night with the most terrible joint and bone pain with a high temperature this lasted about two days and took about 7 to 10days to go away completely. This doesn't happen to everyone but be prepared, have a good supply of painkillers on standby.
Drink loads of plain water the day before, on the day and the day after your infusion. Have Diaorylite sachets ready in case of nausea, and a bowl ready just in case. Take painkillers as soon as you get home and also if you wake in the night with a headache or bone pain.
I vomited the first time I had the infusion and I was really scared to have the second, after all who wants to be ill? I had hallucinations, urinary incontinance, was floppy and completely "out of it" This lasted 2 or 3 days and I should have gone to the hospital but my husband refused as this was the middle of the first lockdown and he thought he would never see me again. If it happens to you, do not hesitate to contact the clinic.
When it came time for the second, I contacted ROS and they were very supportive and advised the extra water and asking for the infusion to be slowed to at least 30 mins. I thought I would meet opposition from the infusion clinic but they were happy to do so.
My osteoporosis doctor prescribed doubling the dose of Adcal six weeks before and six weeks after as well as extra vitamin D soft gels.
Fortunately, when I did have have the second, I did not vomit, and only suffered a headache and some bone aches which were resolved by painkillers. I felt tired but the effects only lasted a few days.
My back strength has improved after my spinal collapse, I am more mobile and I have less bone pain. I am due another infusion in April and I am unconcerned now that I know how to manage any side effects.
I will be having a dexa scan at the end of the year and I think it will show quite a bit of difference.
It has also set me up for a total hip replacement which I have been waiting for some years. The concern now is not my spine, thank goodness, but the chance that my femur may break during the operation. I am hopeful that the two infusions will have strengthened my femur too and I will be okay.
Make sure all dental work has been completed so reducing the chance of any jaw problems.
Good luck, hopefully my message will have helped to reassure you.
Drink lots of water before and take a headache tablet. I was a bit tired after but that was all.
I had my first Reclast infusion about ten months ago. I was so nervous about it, but the infusion went really well and I had no problems whatsoever. I drank a lot of water beforehand, took a Tylenol and asked that the infusion take 30 minutes rather than 15, as it is supposed to lessen the chance for side-effects - and also perhaps make the infusion more effective. Best of luck to you!
drink lots of water and take paracetamol
I had a zoledronic acid infusion in November 2021.
You said you have severe osteoporosis. My 1st DEXA in July 2019 (age 50) showed my lumbar spine T score was -3.9. I haven’t had any fragility fractures.
Under my bio, there are several links. One of the links is to a list of tests to rule out secondary causes of osteoporosis. I recommend discussing these tests w/ your doctor and possibly having these test—ex. if your osteoporosis is due to Celiac or parathyroid gland issues, zoledronic acid will not “fix” the problem. There is also a link to a pdf on bone turnover markers. Before starting bisphosphonates, whether taking alendronate or having a zoledronic acid infusion, your doctor should order bone turnover marker tests. Doing so gives you a baseline and 3 months after having the infusion you can retest your bone turnover markers to make sure the drug is doing what it’s supposed to do.
You need to have a complete dental exam and discuss the infusion with your dentist prior to having it. You also need to have bloodwork within 30 days of getting the infusion to make sure your calcium levels and kidneys are fine. The day of the infusion drink plenty of water before and after the infusion. I took 2 tylenol before the infusion w/ plenty of water, and after the infusion, before going to bed, I took 2 more tylenol with plenty of water. DO NOT TAKE NSAIDS. The infusion should be administered over at least 15 minutes. Some ppl have it administered over 30 minutes (mine was done over 15).
To date, I have not had any major side effects from the infusion.
The minor side effects I did experience are
- After the infusion, as I was pulling out of the parking lot, I experienced sharp pain in my chest/neck. It wasn’t too bad, it was just something I had not experienced before. It didn’t last long, think it was less than 15 minutes. The pain did not interfere w/ my driving.
- For a couple of weeks after the infusion, I experienced dry mouth and a bit of a sore throat. I used Biotene dry mouth rinse and avoided spicy and salty foods and eventually the dry mouth and sore throat went away.
- The weirdest side effect I experienced happened a few weeks after the infusion. One day, my lower jaw/teeth just started tingling. It was weird. It wasn’t painful. It was just odd. It felt like a very low electrical current was running through my jaw. It didn’t last long (less than 15 minutes) and it has not happened since.
My endocrinologist ordered a 2nd zoledronic acid infusion for me for November 2022. I have not had it and am not sure if I will have it. Under my bio, there is a link to my DEXA t-scores for 2019, 2021, and 2022. I know that with osteoporosis not losing bone is considered a win but I was really hoping for bigger more significant gains after having the infusion. Don’t let my DEXA results deter your decision to have the infusion. Everyone is different. It just so happens that I also have hypothyroidism caused by Hashimoto’s thyroiditis and I think that might be why my BMD gains after the zoledronic acid infusion weren’t more significant.
Hi, are you based in the UK? I have never seen those bone marker tests before I followed the link that you send and I just wondered if you are based in the US? Thank you for the helpful infusion advice.
Yes, I’m in the US. My endocrinologist did not do the bone turnover marker tests before prescribing bisphosphonates to me and I didn’t learn about these tests until early 2022. The pdf in my bio is from a bone turnover marker webinar I attended this past summer. After learning about these tests, I asked my endocrinologist to order them for me and I had them done in November 2022. My endocrinologist leaves a lot to desired and was unhelpful w/ interpreting my test results but my plan is to schedule a telehealth visit through my health insurance to find a doctor who can help me better understand my numbers.
I read your post about being diagnosed at 29 and your fractures. I’m sorry that happened to you. It’s highly unusual to have severe osteoporosis that young, are you 100% certain your doctors have searched for the cause of your bone loss?
I was diagnosed at 50, which is considered young for osteoporosis. I was 32 when I learned I’d been through menopause—yep, went to the doctor to find out why my periods had stopped and was told I was post-menopausal. LOL. Unfortunately, I wasn’t given HRT.
When I was 48, I was diagnosed with hypothyroidism caused by Hashimoto’s thyroiditis. I now think that most likely my thyroid was whacky 20 yrs ago and because it went undiagnosed, my malfunctioning thyroid most likely caused my premature menopause, which definitely had a negative effect on my bones.
You also wrote that the zoledronic acid infusion improved your t-scores. How much did they improve?
well I had my gallbladder out 2010 aged 24 and had bowel issues every since. 2015 I was diagnosed with Crohn’s disease then they picked up my osteoporosis after I had already broken my hip in 2012 just from running that was horrific. I also have sphincter of oddi dysfunction and bile acid malabsorption. Plus what they didn’t know in 2015 was that I also had endometriosis and I’ve had bowel surgeries and multiple endo surgeries plus a total hysterectomy last year which is why I opted for the infusion as I know my bones wouldn’t get better once I was in surgical menopause.
Ok my hips didn’t change still -3.3 but my spine was my biggest worry and that went from I like -3 to -2.3 so my spine is now the one area that’s osteopenia 🥳. This is why I feel I have to carry on with the infusion because after I broke all my ribs in 2020 I will never ever forget that pain it will be with me for life in my nightmares I couldn’t leave t her house for over 8 months.
So yes I do know why I have osteoporosis and it will never be solved by diet with my bowel issues even supplements I don’t absorb so the infusion is my best hope.
Funnily tho I don’t eat meat or anything containing vitamin d but I also don’t supplement and every blood test I have shows I’m well in the healthy range of vitamin d which I don’t understand.
On the bone markers I don’t think that’s something offered over here I can ask my gp but I really don’t think it’s one they do. Maybe private but all my gastro and endo stuff is private so I can’t be bothered to move the bone side as I really like my nhs rheumatologist.
Hope my full sorry explains a bit more.
You have been through so much. I’m glad your lumbar spine t-score improved. You mentioned you don’t eat meat. Are you sure you are getting enough protein—protein is very important for bone formation.
Above, you asked about the negative potential side effects of zoledronic acid. With bisphosphonates the 2 biggest concerns that ppl seem to talk about are ONJ and atypical femur fractures. My understanding is that both of these are rare but you don’t want to stay on bisphosphonates indefinitely. My endocrinologist said I could only get 2 or 3 infusions.
My endocrinologist based all the of his recommendations on my DEXA summaries. He has never, not even once, looked at my full DEXA reports nor has he asked to see them. In late 2021/early 2022 when I learned that the data I’d been given was just a summary, I spent a couple of months trying to get the imaging center to give me copies of my full DEXA reports along with the ancillary data. Once I received this info, I could tell that my endocrinologist’s assumptions were flawed—so basically he prescribed a very serious drug, zoledronic acid, based on a faulty assumption.
When I saw my endocrinologist in January 2020 to discuss my osteoporosis diagnosis, I asked him if there were any natural ways to fix my bones. He had no helpful suggestions. I told him I’d had a few big falls and hadn’t broken anything and that I felt like my bones were strong and he said, “That’s not how it works. Your bones are horrible”, and he prescribed alendronate. When I started researching osteoporosis in late 2021/early 2022, I found that most osteoporosis experts believe that DEXA scans don’t tell the whole story, one can have lower BMD and still have good bone quality. A better indication of bone quality is trabecular bone.
Given your other health concerns, most likely your bones were unable to get all of the needed nutrients, and given that you’ve experienced many fragility fractures your trabecular bone is probably also “degraded”.
I know you said that you can’t fix your bones through diet, but you might find these books helpful. The Wahls Protocol by Dr. Terry Wahls—she was a vegetarian and super healthy, then she developed MS, ended up in a wheel chair, decided not to accept this and completely changed her diet, and she pretty much halted/reversed her MS and no longer needs a wheel chair. Also Rebuild Your Bones by Mira & Jayson Calton. Mira was diagnosed with osteoporosis in her 30 and was able to naturally reverse her bone loss. Also, Dr. Susan Brown’s Better Bones, Better Body, is filled with helpful/interesting info.
Again, I understand that you are happy with the zoledronic acid. I’m only recommending these books as a way to potentially get some ideas that might help you. We are all so different there is no one size fits all “cure”.
does everyone with severe osteoporosis have fractures, my upper back aches after doing housework and so on,does an aching back mean I have had a fracture, I have no problem walking, yet.
I would say after breaking my ribs you would know if you had fractures in your spine the pain is next level so if it’s not preventing you from functioning just hurts a bit then I highly doubt it but that’s just my experience.
Radars, my 2019 DEXA showed my lumbar spine T-score was -3.9. I had an x-ray of my spine the same yr I was diagnosed and it showed no fractures; however, I’ve been told that microfractures don’t necessarily show up on x-rays, that an MRI is sometimes needed.
Everything that I’ve read says that unless you are fracturing, osteoporosis is not painful. This is one of the reasons they call it a silent disease. Many don’t know they have osteoporosis until they suffer a fragility fracture.
Is it possible that you are simply over-doing it? Does your back pain go away if you let your back rest? Also have you lost any height? Losing height can be a sign of fracture.
One thing I did was to watch a bunch of videos on how to move safely with osteoporosis. Hip henges are very important—I actually held a yard stick to my back and practiced for a while. I also watched videos on how to safely perform everyday chores to avoid spinal compression fractures.
One should really avoid forward flexion. This puts to much pressure on the front of your vertebrae and can cause fractures.
Two of my favorite physical therapists are Bob and Brad. They have a lot of helpful exercises and tips for ppl with low BMD.
what is hip hedges,when I get middle upper back pain after doing certain things, it goes off when I rest,I am still in 2 minds whether or not to have zoledronic acid infusion. I have an appointment with endocrinologist on 7th Feb .
I have my second infusion next Thursday 26th January so I will let you know how it effects me second time round
Most ppl curve their spines when they bend over. Doing this, meaning curving the spine, is NOT GOOD for your spine and is VERY BAD for ppl with osteoporosis. Another term for curving your spine is forward flexion and it’s something you want to avoid. An extreme example of forward flexion is when someone bends over, touches their forehead to their knees and places the palms of their hands on the floor—the only possible way to do that move is by curving your spine.
Hip hinges are really the way anyone with low bone density should move when they need to do anything that involves bending—such as picking up laundry, loading the dishwasher, etc. Hip hinge is just the term for keeping your back (spine) straight or aligned and bending at your hips NOT at your waist.
Here are a few links to examples on doing hip hinges.
therapyandpilates.com/what-...
You mentioned that you are still trying to decide whether or not to take zoledronic acid. Are you currently taking or have you taken any osteoporosis medications? What is your age? What are your actual T-Scores from your DEXA scans? and have you had any fragility fractures?
hip hinge is a bit complicated, t score is -2.5.t score is-4.1 measured at the lumbar spine, the bmd femoral neck is 0.593.vfa shows superiority end-plate deformity at t12 suspicious for an insufficiency fracture. hope you can understand that.
A -4.1 t-score is considered severe osteoporosis. My t-scores can be found under a link in my bio.
The hip hinge can be practiced standing next to a chair and holding on to it for support. The point of practicing hip hinges is to learn how to bend/move properly with osteoporosis. When you bend at your waist, or curve your spine, you put unnecessary pressure on the front of your vertebrae and can actually crush the bone. You want to avoid this. When you see you doctor consider asking for a referral to a physical therapist who can help you learn how to move properly and help with your back pain. Another good source is Margaret Martin, melioguide.com.
yeah when I did deadlift with weights I did it you stick your bum backwards before you lift,when picking up anything up I always bend at the knees with straight back,
my osteoporosis is due to having no testosterone
Radars, when women go through menopause, they are often given HRT (hormone replacement therapy). Is testosterone able to be supplemented/replaced via medication?
no because I have locally advanced prostate cancer
You mentioned your low testosterone caused your osteoporosis. Are you currently being treated for prostate cancer? It’s my understanding that many drugs used to treat cancer can cause bone loss and that ppl who are being treated for cancer are often given zoledronic acid infusions because of this. My endocrinologist told me that cancer patients who receive zoledronic acid infusions are often on a different regime than those receiving zoledronic acid infusions to treat primary osteoporosis, meaning an osteoporosis patient would be prescribed 1 zoledronic acid infusion per yr for 2 to 3 yrs, while a cancer patient would receive higher doses of zoledronic acid more frequently. Do you know exactly how much zoledronc acid and how often your endocrinologist is suggesting you take/get?
I finished treatment for p/c in 2016,I am now on 6monthly checkups, my testosterone has not recovered hence osteoporosis.
Do you suffer from acid reflux or digestive tract issue? Reason I’m asking is generally ppl start with oral bisphosphonates (alendronate) instead of going straight for zoledronic acid.
yeah I have got hiatus hernia so won't take oral,it looks like zoledronic acid/denosumab
If you opt for prolia (denosumab) be aware that in order to stop denosumabs you must take a drug to prevent rebound fractures.
It might be worth it to start w/ Prolia, take it for a few years (have DEXA scans annually) and then move to zoledronic acid for 2 years to lock in the gains from the denosumab.
Make sure you discuss both of those drugs with your dentist prior to taking. If you need any dental work, it’s a good idea to have it done prior to starting osteo-meds.
thanks dentist knows I have been fitted with a dental crown, I go on the 1st Feb to get the real one fitted, my dentist could not advise me either way of which meds to have,
from what I have been reading it looks safer to have zoledronic acid before denosumab.
My dentist didn't seem to be too worried about ONJ. My endocrinologist definitely down played ONJ. I'm really not all that happy with my endocrinologist so I don't trust everything that he says but I feel confident with my dentist. If she were seeing lots of patients with bisphosphonate related jaw issues, I think she would have advised me not to have the infusion.
One thing my endocrinologist said that I do believe is that you shouldn't stay on bisphosphonates for too long. That's one reason I mentioned starting with Prolia instead of bisphosphonates. Since you will have to follow the prolia with something and since you should take bisphophonates for more than a few years, starting with Prolia and following it with 2 zoledronic acid infusions might be a good option.
I will think about that I am 74 now,I will do more research.
Like you I cannot take oral biphosphonates, in my case it is acid reflux and gastritis.
Dr Google did not really help me choose the best way forward to prevent further spinal breaks, but coming on this forum and weighing up alternatives and side effects, which were discussed here, I decided on the zolendronic acid.
As I said before the first infusion was horrific and I swore I would never do it again. However the Prolia warnings about not stopping and having to find substitutes when the time is up, with the added warning that it does not prevent further fractures, I have stuck with the infusion.
My second one was better, the third is due in April and I have already been written up for next year. So, four in all and the specialist said she will decide after the dexa scans what will happen next.
Back in the summer I was diagnosed as hyperthyroid, Graves Disease, and the endocrinologist has confirmed this contributed to my osteoporosis and fractures. Hopefully the combination of thyroid treatment with the infusions will steady the boat.
Good luck with whichever you choose.
Xx
yeah, if I start prolia and if I stop then go on zoledronic acid or vice versa.
Radars, are you aware that if you start Prolia, if/when you stop it you need to go straight onto zoledronic acid (even if you've taken it before) or another bisphosphonate? It makes a lot of sense to take zoledronic acid first to make sure it agrees with you, because when you stop Prolia it's really important to have a follow-on medication for 2 years. The alternative is to take Prolia for life, but nobody can guarantee that will be possible.
thanks, that makes sense, just wait to see if anyone else has any thoughts on this someone else said start prolia first.
If you go to the ROS website, there are some very informative leaflets about Zolendrinic Acid and other bisophonates. I would advise you to read them before having the infusions. It makes very interesting reading.
Make sure you go to dentist for any work need doing, is it your 1st ?make sure you have taken your vit D and Calcium,keep hydrated,the 1st one l ,l had shaking in the night but over quickly, 2nd no side effects at all,my bones improved a lot,didn't have a 3rd as my kidney function dropped a little, good luck 👍
thanks, I'm in the process of getting a dental crown fitted ,I have had a blood test and my calcium is ok,so I'm not taking any calcium supplements, I take 1000iu d3 and k2 mk-7, I have an appointment with endocrine team on 7th Feb to see whats what.
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