I was offered zoledronic acid two years ago and was so freaked out by possible side effects that I declined. At the time I was at a much lower dose of Pred and naively thought I would be off it by now, that my calcium absorption would return to normal and I'd be able to rebuild my bones naturally. Okay, with hindsight that was a ridiculous assumption at my age. However, so many UTI infections happened between then and now, that my Pred dose has yo-yoed in order to cope and is currently at 15mgs.
Because my Osteoporosis is now affecting my spine (with back pain and a bulging sacrum), I've asked for an earlier appointment with my rheumy to explore Zoledronic acid infusion again. My last appointment with her was February 2023.
Since starting Pred in September 2020, my blood calcium levels have always been lower than normal despite taking every supplement on earth, but nevertheless I was still accepted for the infusion last time, much to my shock to be honest. I've read medical studies of patients with low calcium levels before commencing the Zoledronic acid treatment who developed hypocalcemia within a few days and had to be hospitalised for intravenous calcium after suffering fits and vomiting.
This info is starting to freak me out all over again, even before I have a bone panel blood test this time.
I did ask the GP for another DEXA as my last one was 2 years ago, but she said it was unlikely to have improved so I may as well get the ball rolling for the treatment regardless.
But I'm wavering again, because so long as the UTI's stay away (I'm now taking a urine sterilising medication) and the 1mg taper per month gets going successfully, maybe there's still hope I won't need it. I'm currently working with a physio who is confident with the exercises I'm doing daily, that my spine can be improved.But am I living in cloud cuckoo land?
Another thing I noticed with my last blood test result, was that they raised the 'normal' range of ESR from 0-20 to 0-30 and this seems like a huge jump to me that I wondered if anyone else has noticed the same tweaking of 'normal?' I'm in the UK by the way and using the broken NHS service.
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strawclutching
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What have you been doing to help maintain or improve your bone density? If your density declined in spite of doing the recommended things (Vitamin K2, appropriate exercise, generally healthy diet including the nutrients required for bones, etc) then you should make sure your doctor has tested you for "secondary causes of osteoporosis" because prednisone dosage isn't necessarily the culprit. Other medications (like longterm PPI use) can cause problems, as well as other health conditions (e.g. parathyroid).
My exercise levels have been hit and miss since diagnosis in 2020. I had long spells of fatigue at the higher Pred doses when I could barely move out of the chair. When I got the Pred down to 12 mgs I felt a bit more energetic and started regular walking again, plus some vigorous catch-up housework, but then I'd get another UTI, Pred dose went up, felt crap again for a few months until the dose came down again, and so it yo-yoed.
I take Calcium at night at 2 hourly intervals when the Pred is not so active, magnesium, K2, boron, zinc, Vitamin D3 400 iu's, dairy products, fruit & vegetables, wholemeal cereals daily.
When I was first given Pred I started at 40mgs with no stomach protection and developed severe gastritis within days. After an endoscopy, was prescribed 80 mgs Omeprazole a day which I stayed on for more than 8 months. Had horrendous toilet problems with it and gradually reduced it to 10mgs about a year ago, but that was changed to Famotidine 20mgs during my last hospital stay for a really bad UTI to get my sodium levels back up. So yes, the PPI's no doubt were part of the problem. Not sure if the Famotidine is any better and would like to get that dose down to 10mgs if possible.
I've only been seeing the physio and doing daily exercises for the last 3 weeks but feeling more energetic already. However, I've been having irregular heart rhythms for the last year or so which show up in my PulseBit and which stop me from walking very far before I feel quite unwell. The new GP sent me for an ECG last Friday bu the results haven't come back yet. Not sure if the irregular beats are due to the Pred, but they always get worse at high doses.
It will be interesting tosee what my bone panel shows next time. Wish I could have had them done more often than the NHS thinks necessary.
Sounds like you've definitely been doing the best you can in a difficult situation. Glad you've been feelling a bit better lately. Guess the key is to take is slowly, don't overdo things. I remember years ago my husband tellling me about his grandmother, who had chronic back trouble. He said whenever she felt well enough she would rush around doing everything she could, and you can guess what always happened! Probably PMR fatigue prevents us from overdoing things in that way, but do continue to pace yourself, and I hope you get the right medical care soon. Good to learn all you can about the various bone treatments so you can choose whatever is likely to be best for you.
If possible I would push for another DXA scan. Maybe she's right, things haven't improved. Or maybe things have been stable, rather than deteriorating? Two years is long enough to see what the trend may be, and that can help with decision making. 🍀
I will ask the rheumy about a DEXA scan this afternoon at the phone appointment. She may be able to order one, orwrite to the GP and persuade her to order one. Trying to empty my house at the moment before I put it on the market, so it's difficult not to overdo things. But I am trying to take proper rests in between. Thanks Heron.
Do you separate your calcium and magnesium when you take them?
Calcium and magnesium compete with each other for absorption when taken together so it is best to separate them by at least 3-4 hours for optimal absorption.
I found that prednisone decreases my magnesium which was causing a lot of overnight heart spasms that hurt enough to wake me from a dead sleep. This went on for about 6 months where I ended up with a full cardiac workup complete with a heart catheterization that came back all clear. During that time I joined a Facebook heart support group that suggested that magnesium can help with heart spasms, and surprisingly it did. 🙂
I do separate them, yes. i asked the rheumy about testing blood magnesium back in 2020 and she said they'd stopped doing it temporarily because of Covid (or maybe Brexit , or both 😕). Still waiting for that one, but I take 3 magnesium complex capsules during the day and 3 Calcium citrate (because it absorbs without food) at 2 hour intervals during the night. That's interesting about the heart spasms and the link to lack of magnesium. I find my palpitations/alternating slow beats are worse when the Pred dose is higher than 10 mgs. and also after eating.
The UTI’s can be helped by a gynecologist. Mine recommended estriol cream to the area since then I’ve never had a urinary tract of infection and I am 81. Ladies urinary tract shortens after the changes. Estriol, which is safe for breast cancer survivors, strengthens that spot.
You're very lucky. I use an estradiol pessary twice a week and a vaginal moisturiser but the only thing that has made a difference has been the Hiprex. My immune system is pretty shot maybe because I have two auto-immune diseases now.
What were your t-scores at the last dexascan? Ah - found it, -3.5 and -3.1 in 2022 - having been -2.5 at the previous one in 2019 and that is a massive deterioration in that time. You were well into the osteoporitic range.
My spinal t-score is -2.2 which is better than yours were but a recent spinal x-ray shows compression and a possible fracture in the lumbar region, So tomorrow morning I am getting my first zolendronic acid infusion. I have always said, no bishosphonates unless they are needed but there is evidence they will benefit me. I have no desire to develop a real spinal fracture - at present I have no pain due to that - my husband fell at home, his spinal t-score was similar to yours and he had an awful few months and in fact I don;t think he ever really recovered from it.
To be blunt - if your bone density was deteriorating like that previously - it is extremely unlikely you can improve it to out of the osteoporitic range now. You are living up to your name!
However, you do also need all the tests done to look for other reasons - especially if you have a persistently low calcium level as you appear to. Have they checked your parathyroid function? It is the most common factor underlying low calcium levels. If your PTH level is too high, you can take all the calcium in the world and it may not help prevent osteoporosis.
I would support the idea of the zolendronic acid infusion - but only after calcium and PTH levels have been checked. PTH isn't usually part of the bone panels as far as I know. If the PTH and calcium levels aren't where they should be, there IS a risk of low calcium getting lower having had the zolendronic acid and that is dangerous as you already know - so it MUST be checked.
I think I had my parathyroid checked about 18 months ago and it was normal, but that could have been when my Pred dose was lower and my calcium was normal too. I just can't remember. I realise when calcium is not being absorbed in the normal way, it's topped up by drawing it from the bones which I suspect is what has been happening. When my DEXA result was -2.5 before I developed GCA & Polymyalgia, I wasn't offered any treatment. When I questioned my old GP about that, he said he was following the NOGG guidelines, and that -2.5 did not require any treatment. I'd never heard of NOGG before but it does exist and what he said was correct, though I suspect he was trying to find an excuse for not offering any treatment. I did request some imaging of the spine but was told they only did that if there was a suspected fracture. If my serum calcium levels are below normal or just on the borderline, should I be worried if they want to go ahead with the Zoledronic acid anyway or is it wise to wait longer for them to increase, by which time my bones could be unsavable.
They need to keep an eye on them - because if they monitor them they would see them falling further and if dietary/supplemental calcium isn't enough to rectify the situation, they can avert any problems by giving it i,v,
Actually - the NOGG guidelines DO cover you at -2,5 because you were on pred at above 7,5mg/day. Same applies for imaging:
"4, Consider imaging to look for a vertebral fracture in people with acute onset back pain who have risk factors for osteoporosis , and/or in people with a history of ≥4cm height loss, kyphosis, recent or current long-term oral glucocorticoid therapy, or a BMD T-score ≤-2.5."
As soon as pred comes into the equation, the goalposts shift.
They will try to dis you I have no doubt! But they should have the gumption to see that a simple blood test would serve to either allay your fears or show what needs to be done.
I've just spoken to the rheumy and she's going to ask my GP to order a spinal Xray, bone panel and kidney function blood tests. She said they would only do a parathyroid test if the calcium came back abnormal. So fingers crossed if these tests come back fine it's all systems go. Incidentally, did your husband have Biphosphonate treatment, and if so, was there any improvement?
won't add to any of the above good advice other than your Vit d coild be increased. Both PMRPro and I take 4,000 iU'iU's a day. 400 is not much. I had a parathyroid issues and had a gland removed last year but it was flagged as my calcium was way too high and was having to drink loads. As soon as I started the pred it dropped right back. I guess extra calcium supplements won't be helping your UTIs at all.
I've also had 2 Zolendronic infusions but can't get the third apparently as I have moved hospitals! No reaction at all but my calcium was low, it was within normal range.
I know. Bizarre. I am having my second REMS in December so will see what he says. I had a Dexa in Jan this year after the parathyroid removal and it didn't change as much as I had hoped for. Went for -3.9 to -3.5 (9%) but I am waiting for the full print out, apparently it can take up to two months to get the results!
What the %^££ are they playing at? I had a dexa last Friday. I was told at lunchtime I might be able to download my results from the website in the later afternoon but definitely on Monday!
Don't really need putting off - I have a lot to lose leaving here, not least probably one of the best PMR rheumies in the world and unlimited access to a few drugs not on offer in the UK! But it won't be fair on the girls as I get older - they can't drop everything and run to my aid. And then there is a much preferable climate!!!
I get that. My daughter is much nearer, but still 60 miles away with a full-time job, 2 kids under five and a lazy stay-at-home partner. She says she'll help to move me, but realistically it would be impossible. I just nod and carry on doing as much as I can myself.
Oops! Did I say 400? Sorry, I meant 4,000 iu's. My rheumy told me I was taking far too much and to limit the 4,000's to every other day. I took her advice for a while, but then went back to daily 4,000 doses and I feel better on the higher dose, no doubt about it.
My mother had parathyroid issues late in life and the extra calcium floating around made her very aggressive, or so they told me at the care home. They put her on a drip, but not sure what it was and it sorted her temporarily.
My UTI problems are hopefully being addressed now with a new medication called Hiprex. I was plagued by constant UTI pain even in between infections, but magically that seems to have disappeared and has made me more positive about this whole pesky illness and the side effects of Pred which has been making me miserable for the last 3 years.
It's good to know you had no reaction to the Zoldronic acid. Do they continue to monitor your calcium levels after the treatment or once they seem stable they just leave you alone?
Funny how they are all different. I had a Rheumy back in 2014 who told me to take 4,000 as my Vit D was always crashingly low so I have done ever since.
They don't monitor the calcium per se, but when I have bloods done I request the calcium be checked.
I got a very funny NHS letter last week, well two in fact. The first apologising for having to cancel my Endocrinology appt on 23.1.23 (yes, you read that correctly) and the second rescheduling for July this year!
I was delighted I had no reaction as I am ridiculously sensitive to drugs so it was a relief.
UTIs are just the worst. Hopefully once that is sorted you will be able to move forward a bit, but things like that are just all consuming.
😳Hope you weren't desperate for that endocrinology appointment! Aways nice to receive an apology even if it's more than a year later. Relief from UTI pain has made me a different person, no kidding! Annoying that I could have had the medication more than a year ago had my GP at the time taken the trouble to read his letter from Urology. Binned him off now, so all's good.
It isn't just the bone density that it benefits - it has a stablising effect on the bone structure after only 2 or 3 months and that also reduces the risk of fracture.
If I don't take 4000 IU, like Sophiestree my vit D level slowly drops to silly levels. And I credit it with having had no previous bone density problems.
Hi Strawclutching. Had my first ZA infusion in October. So far nothing negative to report. I have monthly bloods done but never hear anything back from the rheumy, who is very slack. Nothing was done prior to the infusion. My only suggestion would be to get a dental checkup prior and of course the dexascan, neither of which I was privy to because I was not told. I have 9 compression fractures at last count and fingers crossed the infusion kicks in so there are no more. These occurred between May and September. Had the rheumy been on the ball for the year prior, then it may have been avoided. Best of luck, whatever you decide.
Which hurt the most? The compression fractures or the muscle strains trying to support them? My Rheumy is writing to the GP suggesting she sends me for spinal imaging which she previously refused, so I'm glad I didn't have to argue too much for that, but wish I could have had it done in October when I had the injury. You've been throught the mill, and I share your annoyance that things could have been avoided had certain folk done their jobs properly. Did you have an operation on your spine or physical therapy and has the pain improved any?
Hi. The muscles are by far where the pain is coming from. I did not know I had fractures. Now I know because if one occurs, the muscle pain shifts immediately. The OP specialist said a brace would be more painful than wearing a bra, which I cannot. I just re-started physio with an OP physio therapist, but the pain often prevents any kind of routine. I'll keep trying though. I'm in my 7th month of this and I have improved - a lot. At the begiining I was unable to get to the toilet and used a rigged up commode at bedside. Now I can get my meals, shower, use the loo, etc. Walking with the walker, but so grateful to be walking at all. I think the fractures may have slowed down, but I've learned some new methods of being careful. I had vertebroplasties at L1, L2 in September. Then the vertebrae on either side blew out. OP specialist said no more vertebroplasties. Definitely push for the imaging. I had to fight every step along the way, adding only more stress, but is paying off now. I do take Tylenol 3 for pain, which works sometimes and others it just takes the edge off. I couldn't tolerate the AA tablets due to pre-existing stomach isdues, so the infusion was my last resort, although very reluctant I was. No pain when lying down, but that's not conducive to building the back muscles. The pain has not improved much, but maybe my attitude toward it has. I do what I can, even if it's a little at a time and try to keep moving. I am able to walk without the walker, but don't get far from it. The tight muscles wrap around and thus there's not much room for eating, even though I'm hungry. Lost 30 lbs. since end of June. I needed to lose weight, but not like this. As I said keep pushing for whatever it is you need. Take good care.
Your situation makes me feel blessed in a way and I'm so pleased the physio is helping you even though it has taken a lot of work. The weight loss must be worrying. I wouldn't be able to spare it at only 8 stones. Went down to 7 and a half in the week I couldn't eat with low sodium causing nausea and that was scary.
Just been reading about vertebroplasty and it sounds amazing until you get to the things that can go wrong. By 'blow out' I presume you mean the vertebrae either side fractured also? Would that be because the flexibility was compromised?
Yesterday I moved an old portable TV from a wardrobe upstairs to the bottom floor, going backwards, humping the thing from step to step. Think I pulled something on the left side of my stomach from the pain, so today I'm resting. Oh for the days when we did all those mad things without a thought.
Yes the vertebroplasties strengthen, but also stiffen, so those on either side were compromised. Had I not had such nasty OP, maybe this wouldn't have happened? I dunno. Please stop pulling on and lifting heavy things. Left side of stomach could also be your back muscles pulling. We are all different, but for sure we are not the dynamic powerhouses we once were.😉 Weightloss is concerning. If I eat too much it makes me nauseous, so smaller meals more often. I had some to spare, but don't want to lose anymore, unless I was trying. You're awake for the vertebroplasties, which means lying on your tummy for 2 hours while they do their thing. They do give you pain meds through IV on request. Rather glad I'm not scheduled for anymore. Physio was just started so whether or not it's helping remains to be seen. The idea is to push thru the pain without hurting the muscles or the vertebrae.
Sorry to hear about your nasty OP. Mine is a good listener, which makes all the difference. The first one that I saw butted in before I got to the end of a sentence which annoyed the hell out of me.
What a long drawn-out procedure, and then to have it backfire. Such a disappontment.
I'm trying to get rid of as much crap before I move house. Was hoping to avoid asking my already-stretched daughter who lives 60 miles away to help, even though she has taken a few things away for charity shops, etc. on a couple of occasions. Taking my bed apart to get it downstairs then rebuilding it was a doddle 11 years ago, but now ...😞
Should get an appointment for imaging in a few weeks if the links in the chain all line up accordingly.
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