I know there has been much discussion on bisphosphonates on this forum, and I have probably read most of it, including the references to research, but I have a decision to make and would like your advice or experiences please.
This time last year I was in a very bad place. I had just had a hip replacement when my mum , 95 with dementia, had a fall and cut her leg badly. While still on crutches I was visiting hospital daily. Because of the bleeding they stopped her warfrain and within a month she had a stroke. She could not swallow and was fed by tube which she was constantly removing. I had to make the decision not to replace it, and subsiquently had to watch her slowly die.
While this was happening I was told to have a Zolendrate infusion. I didn't need any more decisions so I just did it. I had known it was on the cards as I can't take AA . I had asked 3 doctors for a dexa scan and been refused. "On long term pred and over 65" !
I am now due my second dose:
Do I go ahead?
Will what I have had continue to 'work' for a while yet?
Do I cancel the appointment, or will that do more harm than good as I already have it in my system?
I have had an unplesant feel and taste in my mouth for the past year which I attribute to ZA.
I was diagnosed with PMR Jan 2016. Taking 12.5 mg. after a flare.
Thank you for reading, I look forward to hearing your opinions.
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scats
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Here is how I came to my decision. However, it probably won't be much help to you as it all focused on my Dexa Scan. However, you might want to take a look at the research I used. They might have some information that will help you. (Puzzled at doctors denying the Dexa Scan. Is it actually because of the expense?)
I'd be tempted to deny the infusion unless I were given a Dexa. And I'd request to insert their refusal of that precondition for treatment into my medical file. Then I'd call my insurer to discuss best practices.
There are a few ladies on the forums in their 70s and even early 80s who did not take alendronic acid and were on pred for some 5 years. None of them have bone density problems and at least 2 have been told by orthopaedic surgeons what good bone denity they have. I was not over 65 but refused AA and after over 7 years on pred there had been only a negligible change on my bone density.
Nothing would induce me to have any form of bisphosphonate until after a dexascan. Should my bone density deteriorate I would consider it - but that still doesn't mean I would take it.
Thanks for answering. From what I have read I tend to agree with you. I may find that if I ring to cancel the appointment I will get some reaction and be able to question them.
My heart goes out to you for the terrible time that you have been going through. I am surprised that you are still standing, never mind trying to make a very difficult decision with what sounds like no help at all from your doctors. I am sorry for the loss of your mum which I know began happening a long time ago. I looked after my own mum with dementia for 7 years, latterly in a nursing home round the corner. She died in 2013. So I send my condolences to you.
I have never heard that being on long term Prednisalone and being over 65 was anything other than a good reason to have a DEXA scan.
I know that there have been adverse reports about bisophosphonates ( I can never get the collective name for drugs like Alendronic Acid right) recently, that are worrying to say the least. I experienced real pressure to take AA and was told that I would end up in a wheelchair. Fortunately my Rheumatologist agreed to a DEXA scan and I was then told that “ I had the bones of a 30 year old”. These drugs have never been mentioned again. I know that even their strongest advocates acknowledge that you shouldn’t take them for more than 5 years.
I expect that your trust in the medical profession is at an all time low to compound everything, due to “watching your mother slowly die” due to their decisions.
Do you feel up to insisting that you are sent for a bone scan to put your mind at rest?
Are you able to pay privately for a DEXA scan?
I think that if it was clearly demonstrated that you already have osteoporosis then I might agree to another infusion.
Otherwise,I wouldn’t have the infusion and instead would take vit D, Magnesium and vit K and Calcium supplements and deal with my bone health with a good diet and exercise.
Apart from the strange taste, did you have other side effects from the infusion?
I think Heron on here wrote a very useful post about how she improved her bone health with diet and exercise. I hope she spots your post.
I wish that you had a good wise Rheumatologist whom you trusted that you could discuss all of this with. I don’t know the answer to your question about having had one infusion, are you now committed to a second. PMRPro maybe able to answer that. Or someone who has been through it.
Thanks Jane you can always be relied on to give a sympathetic reply! I did read Herons post, found it very interesting and I'm doing the best I can. I also asked my surgeon about the state of my bones. He said they were like concrete but that he hadn't seen my back bone!
I would take a two pronged approach before that appointment date.
1) The following is an extract from the National Osteoporosis Society website.
"You cannot insist on a hospital referral because this is a clinical decision made by your GP but you can make a request and discuss your questions and reasons. In the same way, you cannot insist on a particular medical treatment although, in most practices, you can arrange to see another doctor to discuss your situation"
You might like to get an appointment with someone else in the practice.
2) If you have seen a Consultant then: Contact PALS.
The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers. You can find officers from PALS in your local hospital.
I notice you are working and although you are over 65, you are still not a pensioner.....I would point that out as well.
Time they realised that men and women are now working well past 60 and 65..........and stopped treating them as 'old'.
The appointment is with a rheumatology clinic that is part of a local hospital I was referred by a GP. All GPs in my practice seem to be of the same opinion. I spoke at length to one (we'll at least 3 minutes! ) about the latest research and he still believed in the treatment.
I am not medically trained but I trained as a scientist and am used to analysing statistics and remain unconvinced.
Sorry for the confusion, I am not still working I wondered if the ZA was after a year, but I do agree with your comments about age, and caring for a parent can sometimes be more demanding. The hours are certainly longer.
The info. on PALS is interesting I didn't know that.
Thank you for taking the time for such a considered reply
I am sorry for what you have been, and still are, going through. You have been told long term Pred, and being over 65, are grounds for no DEXA. Well, I have had GCA 12 years, am 71, and had a Dexa LAST WEEK. I do hope you gep help soon.
Thanks for the reply. I tried saying others on the forum had had scans but they were not impressed. As all doctors ( of different sexes and ages ) gave the same reply I wondered if it was policy.
Hi Scats. You can appeal against the decision to deny you a dexa scan. I did on the grounds of being in long term steroids. My doctor helped the appeal. I had my dexa scan a couple of weeks ago. Was told the result would be with my GP in TEN WEEKS !!
MAKES YOU THINK. The person who did my DEXA, told me the result would be with my GP that night. I told her I would get it in a month from him, but you say 10 weeks. Ludicrous!
Precisely! So much for electronics, hey! I registered, at our surgery, for getting results, leaving messages for GP etc, online. When I tried to get blood results, showed unable. Can't send GP message either. I haven't tried the dexa result. Probably same. So, what service is this, online?
I had a dexa scan 5 years ago and it took about 3 months for the results to be sent to my GP. As I understood the situation at the time was that the scan had to be looked at by a rheumatologist at the hospital and then he sent a report to the GP. Obviously this was only one part of his job hence the delay
No I didn't but I have had a bit of a stressful time recently followed by a lovely holiday with a group of friends ...I may have left my brain in sunny Lancashire 😂
Can only speak from my own experience, we are all different. Diagnosed with GCA PMR feb 2016, now on 13.5 mg. Several pred side effects, latest 2 fractured vertebrae. Took AA for over 2 years, dexa scan never mentioned. Now rheumatologist has referred me for one!
GP said might have been worse if I hadn't taken the AA.
This is entirely subjective but I would say the pain from the fractures is way worse than the GCA PMR. I really cannot stand for more than about half an hour. Possibly because of all the sitting down the PMR doesn't seem so bad now.
OTOH - maybe the AA did nothing. Were your calcium and vit D levels monitored? If they aren't correct/adrequate the AA can't work properly. And maybe it was already so pre-pred.
Vit levels ok last june. I floated idea of non absorption, didn't get anywhere. No family history of osteoporosis.
Now disaster had struck various tests are proposed, horses and stable doors come to mind! There is now talk of steroid sparing drugs and referral to GCA expert. It all takes time.
It is fairly simple really: you do a dexascan immediately the diagnosis is made and pred started. Then you KNOW when the problem started. You can't see through skin and into bones - the dexa can whatever its limitations.
It is in the guidelines (sort of) - why the blazes is it beyond them to do a dexascan for someone who is claimed to be at such risk? The ordinary bisphosphonates don't usually build spinal bone density - they just maintain it. If it was poor to start with you needed something else.
Hi scats, so sorry to hear about your Mum and what you are still going through, I only wanted to add that I was diagnosed with GCA when I was 65 (PMR followed) and have never been denied a Dexa scan, I am 69 now and have Dexa's bi annually so have had two already. I was put on AA on diagnosis and it didn't suit, I tried another in between and am now on Accrete. My Dexa scans are very good.
I feel so sorry when you have to battle with the doctors..wish you all the best, really do.
It is scats, and it's not right either, think some doctors need to be reminded what caring actually means! We're thinking ahead and might move to be nearer our son but I'm worried to death about what healthcare we will get, we get such a good service here.
My GP says I can only have a DEXA every 3 years. With Osteoporosis and curvature of spine, I wish I could have scan more often. Came as a shock when the nurse told me I had lost 3 " in height. I told my GP I wanted to come off Ibandronic Acid, as I don't think it;s doing/can do anything for my bones. He said it's my choice, but he wants me on it. I have decided not to take it any more.
Hi Karools, did he say why 3 yearly, he must have his reasons but I would need an explanation. When I couldn't take the AA I was given Adcal and was able to take it for a while until a dental appointment said the sugar content was affecting my gums and I changed to effervescent, which made me sick! I am now on Accrete (tablet) which has exactly the same content and getting on okay with it. My Oncologist, forget to mention the cancer, might have some influence on regularity of Dexa but it does seem to be the norm listening to others at my hospital. Think being on long term steroids should be the trigger for Dexa, do you have a Rheumy? who is treating you for your Osteoporosis and curvature of the spine, there's more than one way getting what you need, keep with it.
I think the 3 year thing may be up to whoever decides it is necessary after you tell the dr. I think there's a panel of some kind, who decide. I took AA for awhile and had dreadful stomach problems and stopped it .I take Adcal. Call them my sweets.No, I haven't ever been to a Rheumy. I had a marvellous Neuro, who knew about PMR/gca. Last year, when on 3mg Pred, he discharged me to my GP, who knows zilch.I was referred to a top Spinologist 2/3 years ago for my back. I have had the curvature since 11 years old. I have a lot of backache and take Morphine when at its worst.I would like to see someone, more regularly, about my back, but when I asked for a referral, last year, he turned me down. Oh well................
I'm so sorry to hear this, I don't know but surely he can't refuse to refer you when you're suffering so, can't you see another GP in the practice? You are very patient I have to say.
The 3-yearly is a sort of standard - it used to be 2 years since for most people there isn't a large enough change in bone density in under 2 years for the dexascan to be able to assess it. There is also a shortage of dexascanners - if everyone got an annual entitlement they'd be snowed under.
I'm staying where I am - I have to pay 36 euros but I can have one done at the drop of a hat. Even next day appointments were offered!
We are all different, as well as having GCA I have Osteoporosis caused by life-time Klinefelters Syndrome diagnosed at 46 years in 1996. To check on the condition of my bones I have a Dexa Scan every two years next one due in August 2018 all privately funded. I'm on Testosterone Replacement Therapy to reverse the KS Osteoporosis and Prednisolone to control the GCA version. I have a curved spine and oesophagus so couldn't take Alendronic Acid so had Zoledronic Acid by infusion, one dose for first year. As well as 24-hour Amnesia a stinking rotten cold and cough, and other side effects; the damage to my leg skin was so severe weeping sores that my Rheumatologist stopped the drug after 12 months and I'm now on Denosumab inject twice a year for three years.
I am just unlucky but there are alternatives and I hope you make the right choice. Dexa Scans aren't too expensive but essential to determine bone condition.
I took Biphosphonates for 2 years whilst on Pred for GCA. Gca recurred 8 months later & my rheumatologist advised me NOT to have Biphonphonates 2nd time round on Pred as there was some evidence of kidney related problems associated with taking them.
I worried about my bones, but made the decision NOT to have them after hearing 2 doctors in the hospital canteen diss biphosphonates, one ending with "I would never take that stuff or allow any of my family to have it".
I continued on Pred for 4 years with Adcal & made sure I had a good & varied diet, without the Biphosphonates.
Dexa scans were always "normal" until last year when I was diagnosed with severe secondary osteoporosis (caused by steroids) following multiple spinal fractures & collapses.
A consultant in ICU - where I ended up last year with Pneumonia, was very pleased to learn I was not taking them & congratulated me on having a Rheumatologist who was on the ball.
I'm now on Teriparatide injections for 2 years to halt the deterioration & the prognosis is good. I'm expected to be more or less pain free & the possibility of further fractures is very significantly reduced.
I feel I made the right decision & understand the confusion you must feel.
It happened suddenly between June 2016 & June 2017 after a period of continual fractures/collapses which started January 2017. Dexa scan which gave diagnosis of Secondary Osteoporosis was in June 2017.
I am in a similar position except that I have had a decade scan and have osteopenia and ostoeporosis therefore feel I can't take any chances. I was convinced I would be ok when scanned despite being on steroids for PMR since April 2017 but unfortunately I was wrong. You need to have that scan then you can make an informed decision. I have started treatment as advised by my rheumatologist before the scan result as she was of the opinion than prevention is far better than cure.Its too late when you start having fractures!!!! I think we should listen to the professionals. Good luck in your decision.
A dexa scan will tell you the condition of your bones and then you can decide if you want to take the bisphosphonates. It doesn't make sense to give you this type of medication, which has some nasty side effects, without really knowing if you need them.
I agree. I rang the clinic to say as much and said I was unhappy with what I had read about the drug on this site. I wanted to talk to her about it but all she said was 'do you want to cancel then?' I said yes I would, so she said she would let my GP know.
No doubt I will have to face the flack when I see a GP next but I will push again for a scan to see if I really need it. If I do I can reconsider.
I have always been referred to as ' big boned ' and I certainly won't need a weighted vest for exercise as I was borne with a built in one! and I know of no one in the family who has osteo. So I am probably at low risk any way.
However I have developed cateracts - does it ever end?
Thank you again to all of you who took the time to answer my question, you really helped. This is really valuable resource we have here.
I was diagnosed with PMR at 53, had a dexa scan and they found me on the cusp. My rheumy prescribed bisphosphonates but I refused to take them. I'm sticking with exercise and supplements. My mother who's 89, my grandmother who died at 93, they all have/had osteoporosis but never a broken a bone. The bisphosphonates are too scary for me, I'll take my chances with osteoporosis. Your GP shouldn't give you flack, instead prescribe the dexa scan. Here, in the US most insurances allow it every 2 years. Good luck, you should really press for it.
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First visit to Consultant Rheumatologist and not good news
pred causing shaking/cramps
A sensible rheumatologist
No real change with the rheumy!!!
