Six weeks out after infusion of Zoledronic Acid, I am still suffering what may become permanent diaphragm paralysis, pushed up against and nearly collapsing my left lung. I haven't breathed normally since about three days after the infusion, ending up in the ER and then Urgent Care twice. Saw my GP and pulmonologist who were perplexed by their inability to ascertain cause. After almost a month, I finally realized it could be side effects, Googled it, and ***bingo*** the side effects matched mine. However, the "cramping" of my diaphragm and pain along the Phrenic nerve (which controls the diaphragm) aren't listed. Brain fog, indigestion, blurry vision, and several others are. I have been essentially crippled since the infusion. The effects may or may not be permanent. I await my endocrinologist's return call after I called his office today. Since it settled into the bone marrow to regrow bone and is an annual infusion, I don't expect relief any time soon. BEWARE. If you have any pre-existing conditions (I have COPD), be very careful.
ZOLEDRONIC ACID CRIPPLING EFFECTS - Bone Health and O...
ZOLEDRONIC ACID CRIPPLING EFFECTS
i am so very sorry for you. I was prescribed AA and advised that it wouldn’t harm my stomach having already suffered MALT lymphoma. Luckily I didn’t ever take it and was later advised it would have been disastrous for me. Then I was on the verge of having an zolendronate infusion when I read some of the side effects on this forum and cancelled it. There are far too many health professionals who simply disregard the potential side effects for certain patients and proceed with prescribing these toxic medications. I do hope you make a recovery in the fullness of time. Take care.
I had the infusion 6 weeks ago, and have had terrible upper abdominal pain since. I am prone to this anyway but it has been much worse. No let up for 6 weeks. If you report this you get told its nothing to do with the infusion even though it is down as a uncommon side effect. I pray this eases off as time goes by. I had no choice but to have this drug as I had been on Denosumab for 4 and half years and wanted to come off it. I don't know if I can tolerate another infusion next year.
I am interested to know the reasons for wanting to come off denosomab as I am about to have my first injection. I was on alendronic acid for 7 years and it had no beneficial effect on my bone density. I suffered a spinal fracture recently so do need treatment. Thanks in anticipation. X
I decided to come off because every time I had it I would get upper abdominal pain for quite a few weeks afterwards but I am prone to that anyway but it seemed to aggravate it. Other than that I had no other side effects and would have been happy to stay on it. I have now had a zoledronic acid infusion and the side effects from this are worse.
I really feel for you having such dreadful side effects.
I agree with t1gernidster that far too many health professionals simply disregard the potential side effects. They work on the premise that what they prescribe will ‘cure/ help/ save the NHS money’ for the majority of their patients (which I dare say it does) and it’s just tough for the rest and even if you do have side effects then you need to put up with them because they are ‘helping’ you. I took alendronic acid for four months and for me the side effects unbelievably dreadful although not as bad as yours StormyRon. Fortunately my body and mind went back to normal once I stopped.
Next visit to the rheumatologist I came under a lot of pressure to have an infusion of zolendronic acid which I declined - my worry was that if I had an entire year’s worth in my system and it didn’t agree with me either then I could be feeling very ill for a very long time and there was no way I could do that again, at least with tablets I had bern able to stop them. I was surprised that in spite of the very ‘hard sell’ the rheumy was surprisingly honest and said she couldn’t guarantee that I wouldn’t feel just as bad with the infusion - but the staff who carried out the infusions were lovely, I wouldn’t feel a thing, I’d didn’t take long and I could have it any time I wanted it etc etc.
So I hope you poor body gets back to normal soon StormyRon.
I’m sorry you are going through this and hope your endocrinologist can be of some help. Was this your first zoledronic acid infusion and had you taken oral bisphosphonates before having had the infusion?
Yes, it is my first infusion. No I have taken no other oral bisphosphonates.
In your first post you wrote, “Since it settled into the bone marrow to regrow bone”. Bisphosphonates, including zoledronic acid, do not regrow bone. Bisphosphonates are supposed to inhibit osteoclasts (bone resorption / the breakdown of bone) but they don’t actually build bone. The “goal” with bisphosphonates is to slow bone loss. If bisphosphonates work, potentially, one’s body’s ability to make new bone equals or exceeds bone loss, in which case one’s BMD would either stay the same or show an increase.
If you look at my bio, I have a few links listed, one is to a bone turnover marker pdf that you might find informative.
Have you had any improvement or heard anything back from your endocrinologist?
I reluctantly had the infusion as my only alternative at the time was Denosumab and I didn't want to start that as I was and still am fearful of stopping it and having rebound fractures.
I also could not take oral Alendronic Acid due to stomach problems including gastritis.
Within 12 hours I was very ill, hallucinations, vomiting, urinary incontinence, floppy, could not move or speak. My husband was beside himself trying to decide how he could help me, and as this was in the middle of covid he was afraid if I went to hospital he would never see me again. On the second day I felt slightly better and was fortunate to have a routine blood test from a domicilliary nurse whilst still in bed. The result was the infusion had stripped the calcium from my blood and I was in danger from a heart attack.
I didn't know this until a few days later when the gp after reading the blood results organised a 999 ambulance to take me to hospital. Fortunately I did not have to stay in.
When it came to the time for a second infusion I prepared myself. I had a waterproof mattress, sick bowl, and drank loads of water the day before, the day and the day after. I took extra prescribed Adcal and vit D3 for six weeks beforehand and six weeks after and I also asked for the infusion to be slowed down to about 35 mins.
I had a bad headache within the twelve hours and felt weak and achy bones but that was all. No sickness, incontinence or hallucinations. I felt like I had flu for a few days but blood tests were near normal.
Within a week or so I was back to "my normal". Now I know how to avoid the side effects I am less anxious about having a third infusion. For me, it is worth a few days discomfort for a whole years worth of not having to think about it any more.
I had had a severe spinal collapse, with the vertabrae like falling dominoes. It could not be ignored.
Everyone is different and I totally understand what suits one person may not suit another but the results of those two infusions have made a real difference to my mobility and bone strength. I still use a frame or touch the furniture as I move around but the pain has lessened and I feel better in myself.
It seems none of the treatments are without side effects unfortunately, the dilemma is which one will have less impact on you.
My heart is with you as you undergo efforts to repair you spine and help your bones Hopefully, all will go as you desire. Side effects are built in, for certain.
I'm sorry to read your side effects and pleased that with your second infusion you were knowledgeable and more aware and glad it has helped your bones, that is good news.
I have been recommended to have zoledronic acid for the first time in March. They do it every 18 months here. I am anxious and wondering, if following your guidance of more water, I already have adcal, would help. The nurse said its a half hour infusion here. thank you.
Thank you, it was definitely worth going for the second one, even though I was naturally anxious. It was the osteoporosis doctor who prescribed the double dose adcal and also the vitd3 gel capsules. This was to prevent the loss of calcium and also the extra water prevented the dehydration I had when I had previously had incontinence and severe vomiting.
I was then able to continue to take my normal painkillers and other medications, which I couldn't keep down before, so that helped enormously with my general health, particularly my various autoimmune conditions.
I am hopeful if you prepare by drinking a lot of water over the three days, taking painkillers and diaroalyte if needed and have light meals you will come through okay. Then heyho no more thinking and worrying about it for a long time.
You say your clinic does it every 18 months, are you in the UK or are you having it as a hopefully preventive treatment? My fractures were spontaneous and I already had problems, so my infusions are yearly.
Thank you so much, I am anxious but my hip femeral neck is -3.6 otherwise I might try diet and exercise. I have rheumatoid arthritis though, but I think I'll get a private physio and some diet advise as well. I am in Nottingham and she said they have found it is just as effective 18 monthly. And they do it over half an hour, I think in some places it is 15 minutes.
its the jaw thing as well, I've needed two mildly loose teeth removed. I have no fractures. I am 73. We only found out because I requested a scan.
You've given me a bit more hope but she did say I may have flu like symptoms for a couple of days after and to take paracetamol.
Were you already having AdcalD3 or was that added before your second infusion?
Please be aware that it may be worse than mild flu symptoms. I was told that. It was worse than any flu I have ever had. After 12 hours I started having the worst joint and bone pain I have ever experienced I could barely move, I had a high temperature. This went on for a few days and gradually improved over about 7 to 10 days. I did all the drinking water. The only thing I did not do was take Paracetamol before the infusion, and before I went to bed. Someone else on here recommended that. I only started taking them once the terrible pain started. I know this doesn't happen to everyone, and there must be lots of people who get barely any symptoms. Hopefully you will be one of those. I was just one who reacted badly.
Like you , I would say the flu symptoms were not 'mild'. My consultant (in the UK) did warn me that the side effects could last up to a couple of weeks, rather than just days. Sadly I had other really bad side effects - which I've just posted to the group - and are still not sorted 10 months post infusion. It has put me off having any more bisphosphonate, due to the real possibility of adding to my woes! Good luck and hope you did improve?
Hi sunnyweek I hope I can help with putting your mind more at ease. I was taking Adcal already but the specialist doubled the dose and added Vitd3 to be taken 6 weeks before and after the infusion. Blood tests were taken a few days before and again a few days after, in particular to check my calcium levels which were fine.
Before the first infusion I was advised to have a complete dental check up, any fillings or extractions to be done. Fortunately I was, am okay. I have a deep clean every four months, where my NHS dentist thoroughly checks my mouth. I have had temporal mandibular disease, (TMJD) which affects the jaw joint for about 7 years and I was concerned this would be made worse, fortunately it has not.
After the collapse, I was advised to up my dairy intake and the physio suggested gentle movements and stretching. Nothing strenous or over reaching. Although my mobility did not seem to be very much improved after the first infusion, the difference with the second one is very much better and my back, although misshapen is much stronger.
I am waiting to have a total hip replacement, cancelled twice recently as I need a high dependency bed and none were available. I have been warned of a complication of fracturing the femur during the operation but it needs to be done as my hip is bone on bone. Hard choices.
Is your osteoporosis said to be mostly caused by steroids for your RA? I have been taking them for 20 years for lupus and my rheumatologist did warn me of possible consequences.
I am a few days short of 69 and I chose to continue taking steroids because I wanted a better quality of life. Without them I would not have gone on long haul holidays or taken pleasure in playing with my grandchildren, enjoyed family occasions and caravanning. I know I paid a price with the crippling spinal pain and immobility but I still want to enjoy life without my autoimmune conditions taking over.
Osteoporosis runs in my family so there was always a chance of it, even if I had not taken steroids.
You can be prepared by drinking lots of water, take painkillers as soon as you get home even if you feel okay, and cancel any activities so you can rest. You may feel a bit unwell for a few days, although you may also have no side effects at all, and then you have 18 months when you do not have to think about it.
I have no hesitation in having a third infusion because of the difference it has made to me, but I could so easily been persuaded to not have a second after the first infusions terrible side effects.
I wish you well, good luck.
Sorry, I missed your reply. Just seen it, thank you so much; sorry for what you went through. Thank you so much for the information and details for afterwards eg of paracetamol, water.
hi , I live in Nottinghamshire too, I have been advised to have an infusion after not tolerating tablets… I have just had two teeth out so had to wait another 6 weeks so due in March for the infusion… petrified . My dexa is -3.5 found out after breaking my hip, had it replaced due to a very bad fall. Otherwise I would never have known. Have been told on this site by someone very helpful to have a Rems scan . You can only go to certain clinics… there’s one in Lincoln in February so I am considering that. Scan plus diagnosis and chat for £200. Been really scared so think I will try this. It is supposed to be better than a dexa scan. I’m a bit of a wimp and don’t know if I will cope with being unwell for a week. Especially as I feel o.k. Now.
Hi thank you for your reply. Where in Notts do you go for your infusion? I go to the treatment centre at the QMC. I've heard of those other scans. I have rheumatoid arthritis too and not sure I could travel there. Hope you'll let me know how you go on. I'm worried too about the infusion, the nurse said possible flu like symptoms, and to take paracetamol, which someone has advised here, and drink a lot, and they slow the infusion at QMC. Some places keep it at 15 mins. My worst score is -3.6. I'm trying exercise too and diet.
hi, don’t know if you got my last message but I am in Worksop ant that is where I am having if I decide to my infusion inMarch,x
Hi, nobody wants to do something that may make them ill, and I totally understand where you are coming from. You are not a wimp, just weighing up the undesirable things that may happen and that is making you worried.
I had already decided to take the AA tablets as I told my rheumy quite strongly that I do not want any substance to be in my body that I could not stop, (this was before my fractures). Then I thought better of it as I have gastritis and acid reflux and decided to improve my diet instead. I also took Adcal when I remembered although it didn't and still doesn't help with the reflux, but I thought that was all I needed to do.
Unfortunately after two years it was not enough. I never thought an osteoporotic spinal collapse would happen to me and it was a complete shock, especially the crippling pain, becoming incontinent and housebound. I felt very foolish for being so offhand by ignoring medical advice. I realised too late the worse thing you could do is to do nothing.
I have to have a total hip replacement, now cancelled for a third time because of lack of beds. I have been warned the op could cause a fracture of the femur as well, which I am terrified about.
On the other hand, I may be more incapacitated for a few more months, but then on a positive note I will hopefully have many years with better mobility.
Accept there may be a week or so of feeling unwell and perhaps even quite poorly, but and it is a big BUT, this is for just a short time and there will be many months when you will find you are improving and with the added bonus of not having to think about any other medication or treatment for a year or more. Of course you may be lucky enough to have no or little reaction, it happens!
It is a difficult decision and only you can make it. Just be sure you are well informed, take the advice of the ROS nurses and prepare as much as you can. Lots of water, painkillers, diarolyte in case of sickness, (I was not sick or nauseous the second time) and have the infusion slowed at least to 30 mins.
Good luck in whatever you decide.
hi thanks so much, you sound very wise… I seem to be getting worse as I get older. Have you had a Rems scan? I think I am more worried because gone are the days you could call in and see your doctor and discuss your worries… it’s hanging on the phone for an hour then being told you can’t have a face to face unless it’s urgent. Urgent? Is going out of your mind with worry classed as urgent? X
I had Dexa scans, about three or four, two to three years apart because of taking steroids for lupus. My rheumatologist saw the worsening scores and gave me the usual options, and like you I did not want anything I could not stop if I had side effects.
I started with osteopaenia, but went onto osteoporosis first in my hip and then spine. I ignored it and just thought my aching joints, limited mobility and sore bones were down to me getting older.
I was a bit head in the sand really, even though osteoporosis runs in my mother's family. My late mum lived over two hundred miles away and although I could see her deterioration between visits, I thought it was her RA, not realising she had osteo for many years, because of steroids. She had only been offered AA tabs which were ridiculous for her as she could not even sit up straight, let alone stand and walk around!
On her death certificate it read she had kyphoscoliosis and resultant pneumonia, along with hypertension. The kyphoscoliosis was caused by spinal fractures, and her breathing problems because her ribs were squashed down. I wish I had paid attention as she never told me.
I tell you this not to frighten you but to not hesitate in taking treatment, whatever kind you decide.
The ROS nurses are very knowledgable and supportive, if in doubt I would trust their information over any gp. Give them a ring and they will answer your questions and allay your fears, and they don't mind how long you are on the phone!
Xx
thank you so much so sorry to hear about your mum.
Yes I know you are right… I think I may ring them this week x
I have also had a spinal collapse, losing about 2" from my5'8" height.
My loss of inches led to a higher BMI, totally unfair as I had not gained weight!!!
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