Pred-induced Osteoporosis - Zoledronic acid??

[Frewen1]

Hi Everyone

I was asked to report back after I'd seen my consultant this week, re the ankle fracture I incurred without a fall or trip - you rightly deduced that she said I must have a Dexascan. (I await date and time for that). However, she also said that the weekly Alendronic acid I've been taking for a year, along with the Pred and Methotrexate (the latter just 4-5 months) "obviously isn't working"... and she wants me to swap to Zoledronic acid - I'd never heard of it, of course, but many of you will know that it's an alternative to Alendronic acid, and (in this case) is administered as three doses, intravenously, in the hospital, once a year. Side effects?... I immediately asked. Much the same as Alendronic acid, she said (well, luckily I haven't had any from AA)... "you may just have flu symptoms after a week or so, just take paracetamol". So far, so ok... but then I looked up the side effects, on at least three different sites. (WebMd, Nice, Mayo, Royal Osteoporosis Society, etc ) There are 38 "fairly common" adverse side effects, many of them fairly horrible sounding... and 30 "less common". I have to say, most unlike me, I was a bit upset last night by the time I'd finished reading this. It's like one's been hijacked in that if I am indeed one of those who starts having muscle spasms, sickness, itching, cognitive bewilderment, anxiety, jaw and mouth problems (and those are just the first ones off the top of my head), how do they reverse the effects if the stuff is in my body for a year? And yet, one is told this is preferable to more bone breakages. Being caught between the devil and the deep blue watery stuff springs to mind... I know a few of you will have strong opinions one way or the other, and I would be very grateful for your advice. Even if it's "oh, get over yourself and do what you have to do. " Thanks x

[Frewen1]

...and of course, as soon as I posted, I saw there'd been a similar thread only recently, which I just didn't see in time. Sorry for the subject overload.

[MrsNails in reply to Frewen1]

I think yours needs to be separate in view of what happened re your Spontaneous Fracture.

[MrsNails]

Hi Frenwen - l’ve had Zolendronic Acid Infusions Six in total - one every 6months for 3years. It was as an adjuvant therapy following Chemo Therapy for Breast Cancer. I did actually write about it yesterday in another post.

I read the side effects but for me there was no choice due the risks of Bone Metastases & once you’ve had Chemo most other side effects pale into insignificance.

However, l duly went for my first infusion & was totally convinced they’ve forgotten to add it to the Infusion (it was that unremarkable!) but l had my 2nd & subsequent doses with out any impact or side effects…

The only thing of note was at my next Dexa Scan the Osteopenia that had been reported on previously was no more & it showed a Normal Result. I am due another Dexa Scan in due course, it has just been requested, it will be interesting to see how my bones are almost three years after completing the treatment.

MrsN

[Frewen1 in reply to MrsNails]

Thanks for that - and yes, you had so much more than GCA to contend with... I'll just cross everything and presume it'll be alright. x

[MrsNails in reply to Frewen1]

I never recommend either way, l prefer to just relate my experiences however, you need to think about your fracture risk & weigh that up against possible side effects of the drug…..

There are things you can do to improve your bone health see FAQ & HeronNS ’s Post but you have sustained a Fracture with no cause so you do need treatment & it will be beneficial to see your Dexa Scan.

See what the Waiting Time is like but l imagine your Consultant will have marked it Urgent…..

You can however get one done Privately for around £125 - it was discussed yesterday or the day before.

I would also recommend Posts in our FAQ by DorsetLady & Bone Health Group on Health Unlocked - l’ll check that out for you.

Bone Health on HU

healthunlocked.com/boneheal...

FAQ’s

healthunlocked.com/pmrgcauk...

[Frewen1 in reply to MrsNails]

You are so kind... thanks x

[mgrogers99 in reply to MrsNails]

Your links were timely for me tonight! I had my 2 year dexascan yesterday (on prednisone for a bit over two years and am currently tapering at 15 mg.). My results were fine 2+ years ago but today learned I have a 12% loss and osteopenia! To make my day even better I was unable to get up from a small step stool....tried different things for 45 minutes....my legs don't work since having Covid and my PMR shoulders are useless. I think I've concluded that I cannot do my housework any longer. How do you cope in your homes? And in case you think I'm still on the floor I had to have a friend come over (she has a key) and figure out how to get me standing again!!! I felt so discouraged I burst into tears. Things could be worse!

[MrsNails in reply to mgrogers99]

Oh Bless You 💐 l know what it’s like to get stuck on a low stool, l can’t kneel - haven’t been able too since l was a teenager following surgery but stuck on a stool or floor l know what it’s like 🤦🏻I don’t do a lot of housework, l have a ‘Man Who Does’ l do the finer things but my lovely husband wields the vacuum, makes/changes the bed, steams the bathrooms, cleans the windows inside, l do the dusting etc so l’m very lucky.

Glad the information was of help to you.

Kind Regards

MrsN

In FAQ read HeronNS ’s My Osteoporosis Journey -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to mgrogers99]

Mmmm - but what t-score is the osteopenia? I was already osteopeneic after 3 months of pred - almost all of us will get that label but it is a very broad church from almost normal to almost oseoporosis and mine was a level that didn't require management.

I can't kneel either because of pain as a result of injury so haven't actually TRIED to get up from the floor recently!! Though so far I have been able to get up by one knee being on a thick cushion.

Housework - I make friends with the dust bunnies! I have recently managed to find a cleaner - had just found one when Covid happened and we weren't allowed visitors of any sort. but my husband is very vulnerable so we weren't very keen on letting anyone in the house.

[mgrogers99 in reply to PMRpro]

My results are on my other computer (using tablet) and I can't get into it. I'm surprised but not overly worried. Meds not discussed with pleases me. I would rather have more dust bunnies but have a dog that sheds so much it is a wonder she has any hair!!! Usually I can get up from the floor but yesterday was a new experience. I'm sore today from trying and bruised from my friend pushing and prodding me!!

[PMRpro Ambassador in reply to mgrogers99]

When my husband falls I have no other option than calling an ambo!!! Though the call handler down in the more Italian town suggested once I get a neighbour. At 3am!!! But he needs two to lift as he can't help at all - not size, under 45kg.

[Constance13 in reply to PMRpro]

Wow 45kg? However does he manage (and you)? Our thoughts are with you and him.

[mgrogers99 in reply to PMRpro]

It is very expensive if I do that.....was $600 several years ago! I didn't fall but merely (haha) couldn't get up!! My arms have no strength with the PMR and there is weakness in my legs since COVID. My doctor ordered a physical therapy evaluation....hope I can get strength back.

[PMRpro Ambassador in reply to mgrogers99]

One of the joys of social medicine is a free ambo service. But I do also have an alarm run by the White Cross who supply the transport service - the same people come out but the line is direct to them so I don't get a patronising numbskull telling me off and they also hold a house key so they can get in even if I am out when he falls. I already give a donation to the charity every year - which gives me benefits and now has been upgraded to provide international medical holiday insurance into the bargain - so this is just a bit more.

[mgrogers99 in reply to PMRpro]

I am open to socialized medicine...more than most Americans I think. I have several family members living in Canada who have good care!

[HeronNS in reply to mgrogers99]

Empathy. But no solutions. Yes, read my story for some ideas to help with the bone thinning.

[Ana-16 in reply to MrsNails]

I was about to reply but then saw your response. I have a similar history : breast cancer (twice) chemo, fear of recurrence or metastasis to bones, osteoporosis/osteopenia and so gratefully accepted the Zolondronic infusions. Ive had three doses and felt a bit achy after the third dose but minimal. I’m expecting to be offered another dose now I’m on steroids and would not hesitate to accept. Everything has side effects (just before starting one of the chemo sessions I was given a leaflet listing possible side effects They included possible damage to almost every organ and finished with “and possible death”. At which point I just laughed.) Of course I accepted and am still around. I think that people are more likely to report a bad experience and so it’s difficult to get a balanced view. Frewen must make her own decision. Best wishes to all

[MrsNails in reply to Ana-16]

Ana-16 - l’ll PM you later (A Fellow Warrior😉) just about to head out! MrsN

[piglette]

I think the documentation for most medications are pretty horrific. I had an anti coagulant recently and the number one side effect was Death, reading the other side effects death seemed preferable. I was only looking it up to see if I could drink with them, luckily I could.

[Frewen1 in reply to piglette]

That made me laugh loudly! Thanks x

[PMRpro Ambassador in reply to piglette]

Which delight are you on? Never occurred to me I shouldn't drink!!!!

[piglette in reply to PMRpro]

This was after my hip op. My sister was reading out the list and we were doubled up in laughter and that was before we started drinking.

[GerriMc in reply to piglette]

😂😂😂

[PMRpro Ambassador]

It's one thing being given it "just in case" and another when there is a good reason. Funny though - you aren't the first person I've come where AA apparently hasn;t done anything.

[Frewen1]

Well I thought it was odd as I have a hiatus hernia...but no, nothing

[Sho-Sho]

I understand your anxieties over possibly taking Zoledronic acid by yearly infusion. I have been through the same dilemma. 5 years of quite high pred for GCA has resulted in osteoporosis shown by 2 DEXA scans in the last 3 years. Apart from 2 years of aledronic acid at the beginning which always made me feel odd, I have not taken any of the bisphosphates because of potential side effects which I have read about. My doctor insisted I should go to the osteoporosis clinic at the BRI (bristol). The consultant explained to me, having seen my results of the DEXA scan, which showed a very high risk of another spinal compression fracture & hip fracture, that it is the fracture risk, that in his opinion, is the key to prescribing Zoledronic acid, & that I would be extremely foolish not to have it. I have been persuaded & waiting for the appointment. I always research pos side effects which, of course, always put the fear of God into you!I hope this is helpful.

[Ronnie101 in reply to Sho-Sho]

Thanks for posting this - it's very helpful as it mirrors my experience - 6 years + with GCA/PMR, spinal compression fracture, poor Dexa scan results, short course on AA, then scared off by possible (not actual) side effects and the latest research on bisphosphonates, and constant pressure from my rheumy to have a zolendronic acid infusion. I probably need another Dexa scan to scare me into having it!

[Frewen1 in reply to Sho-Sho]

Yes indeed, many thanks. The more people one knows have lived to tell the tale, the less worried one is about taking the plunge

[Mimma]

Hello Frewen1 I have had three infusions of Zoledronic acid. After the first one I suffered from vomiting and flu like symptoms- these subsided after two days. After the second infusion I had no reaction except I did suffer from anxiety. Can’t be sure if this was from the general covid situation or related to the zoledronic infusion. I had my third infusion last month two weeks before a total knee replacement surgery. Apart from night sweats after the operation I haven’t had any other adverse effects.

I did not want to take AA so the choice of a yearly infusion sounded better to me.

There has not been a great deal of bone density improvement so far. I will have a dexa scan later this year which I hope will show some improvement.

It’s a personal choice and I hope you’ll be happy with whatever decision you make.

I hope this has helped a bit.

Take care

[Frewen1 in reply to Mimma]

Thanks so much for that history of yours. It’s all coming together to make me think that I just follow the consultant and get on with it.

[peanutann]

My best friend is in the hospital now with two snapped femurs because of AA. They had to put rods in both legs.

levinsimes.com/fosamax-link...

[HeronNS]

If your OP med definitely has shown no improvement, check whether your doctor ran all the tests necessary for determining if you have any "secondary" cause of oosteoporosis. It's not good enough to assume age or pred, there may be other factors. I can't actually access the site I would normally link to (osteoporosis.ca) as they are in process of migrating to a new website. But google secondary causes of osteoporosis. One which seems to come up a lot on the bone health forums is problems with the parathyroid glands.