Biphosphonates, yey or ney

[Bcol]

Hello o wise and wonderful ones. I put in an email prescription request for more Pred this week and included my diary spreadsheet which has a complete record of Pred taken, BP, BS and weight since diagnosed with PMR in June. Started on 30mg on 13mg at moment. Also asked about whether I should be on Vit D-(Adcal D3) and Vit K2. No problem with the Pred prescription, assuming it what I asked for, quite agreed with me regarding the Vits, but no prescription. Asked to make, and have done so, a telephone conversation to talk about diabetes and BP check and other bone protection tablets I. E. Biphosphonates. Never had a bone scan or any other sort of scan in reality. Do I need to be on this at this stage?

[DorsetLady PMRGCAuk volunteer]

You should be on Adcal D3 and on Prescription - says in guidelines below -

(6) We recommend the use of bone protection when initiating steroids for PMR to prevent the complications of osteoporosis (A−).

Individuals with high fracture risk, e.g. aged ⩾65 years or prior fragility fracture

Bisphosphonate with calcium and vitamin D supplementation

DEXA not required

Other individuals

Calcium and vitamin D supplementation when starting steroid therapy.

DEXA scan recommended

A bone-sparing agent may be indicated if T-score is −1.5 or lower.

Individuals requiring higher initial steroid dose

Bisphosphonate with calcium and vitamin D supplementation (because higher cumulative steroid dose is likely)

You won’t get VitK on prescription.

Suggest you refuse Bisphosphonate until/unless you have a DEXA scan proving you need it.

[Bcol in reply to DorsetLady]

Thanks DL, that was my thoughts as well. I don't know the doctor who sent the text, think she is either a locum or a student. I've got the appointment in a couple of weeks so another while without is probably not going to do me any harm.

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

I’m not against them per se, in fact I was on AA for 4 years without a problem, but I needed to be.

But why take additional medication if not required.

[Bcol in reply to DorsetLady]

I'll makes notes and make sure I everything clear in my head before the call, hopefully if its my normal doc, there will be no problem.

[Bcol in reply to DorsetLady]

Thought I'd try and save a bit of time and suggested to surgery that they added the Adcal D3 to my Pred prescription, as Doc agreed I should be on it, but no, they want to talk to me first. I also suggested that I come in for a BP check and HbA1c blood test before the telephone consultation but no again, they want to talk to me about that first as well. All seems a tad weird!!!!

[MrsNails in reply to Bcol]

When you are On The Ball they really should take advantage & have the Numbers/Results in front of them.....

I have the same protracted issue getting a MTX Blood Form - talk about reinventing the wheel.....

I respectfully suggested after each Blood Test they issued the Form for next time, then you can ring for your Appointment & go in on the appointed day/time instead of ringing twice, once to request the form, then to book an appointment & on the day stand in

Line at Reception to collect the Form to hand to the Nurse....

I was an Out Patient Co-Ordinator in a Previous Life - it ran like Clock Work.....

Any unnecessary, protracted methods were honed to perfection, it frustrates me greatly when l see long winded unnecessary steps added to every simple task!.....

[Bcol in reply to MrsNails]

It is strange this time, because up until now my surgery has been really efficient, but I don't know this particular Doctor, so we will see. I'm not worried as its only 10 days so I'm not going to collapse with bone failure in that time. If I do I'll come back and haunt them!!

[Rosbud in reply to MrsNails]

I don’t understand the NHS at the moment, in my day we sent out blood forms and X-ray forms so all results were in ready for consultation, saves time and money , not rocket science!

[Bcol in reply to Rosbud]

Couldn't agree more

[PMRpro Ambassador in reply to Rosbud]

Here they give you a blood form together with the request for the next appointment and it is up to you to go a week or so before the appointment. And if you are sensible, you get the GP to give you a few other things to be done all at the same time! OH has a urology appt Friday and had his PSA form, the GP added a dozen other things, blood taken on Tuesday morning, he's just downloaded the results online on Weds and there it is, done with a minimum of fuss!

[Rosbud in reply to PMRpro]

What A great system , keep well both of you x

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

Who knows what the thinking is nowadays!

[Bcol in reply to DorsetLady]

It's like a lot of things at the moment, without rhyme, reason or forethought.

[MrsNails]

They really do like to push it, l took it as my Mum had Osteoporosis, due to being a long term Pred Taker.

You can ask for a Dexa Scan to see what your bone density is like. Our friend HeronNS has done a lot of research into other ways to keep your bones stronger so well worth looking at her page.

As it turns out Biphosphonates have been beneficial to me, as they are now prescribed as an adjuvant treatment following the particular type of Breast Cancer l had as it’s very prone to spread to the bones.....

MrsN

[Bcol in reply to MrsNails]

I think it might be an interesting conversation. Hopefully it will be with my normal doc. It's not as if I've even been been on Pred for very long.

[MrsNails in reply to Bcol]

Read up on HeronNS before you speak to your GP 😉

[Bcol in reply to MrsNails]

I will, thank you.

[PMRpro Ambassador]

My personal mantra is "No dexascan - no bisphosphonates". Start with calcium and vit D and exercise.

I have been on pred for 11+ years, much of it at above 10mg. I was handed prescriptions for pred, Adcal (calcium and vit D) and alendronic acid at the same time. I took 4 tablets of AA before discussing it with a different GP - I'd done my homework by then and he agreed with me that it was a good idea to wait for my dexa result. It was fine so I never took another tablet of AA. I have now had 4 dexascans, my NOF hip t-score is -1.1, exactly the same as it was at that first one over 11 years ago, and the spine is -1.6, it was -1.5 originally. The local osteoporosis expert has tried the bisphisphonate discussion twice - this time she actually expressed amazement, she had never seen as good a set of figures in a pred patient. I had expected her to push the bisphosphoantes and I was ready to talk about it.

Had I started them then, I would have been on a potentially pretty unpleasant drug for 11 years with no need at all. Dentists wouldn't touch me with a bargepole and there are potential long term adverse effects with them that doctors rarely mention. They also happily hand out PPIs for your stomach - and they are just as likely to lead to loss of bone density. They don't mention that either!

HeronNS's story:

healthunlocked.com/pmrgcauk...

[Bcol in reply to PMRpro]

Thanks PMRPro, that will be my line on the phone. Not sure if she is expecting to do the BP and HbA1c test over the phone as well?!!!!

[Bcol in reply to PMRpro]

Really interesting story (Heron's) going to be a few nights reading there.

[HeronNS in reply to Bcol]

I could have provided a bibliography a page or two long. If you have questions ask me as I may be able to find more info for you.

[Bcol in reply to HeronNS]

Thanks Heron, I will so do as questions arise, will do the reading, then wait and see what transpires at my consultation. Certainly not going down any extra medication line without the Dexa scan, apart from the Adcal D3 and K2.

[piglette]

I would definitely push for a Dexascan before agreeing to take bisphosphonates. The chance of getting one quickly seems a bit limited at the moment. In my area anyway. All you do is lie on a bed and the scanner passes over you, it takes minutes. You probably won’t need to remove any clothing as long as you don’t have any metal on them.

[Bcol]

Thanks Piglette, that is what I'm going to go with. Happy to have the scan if they a can/are able to do it. Lots of metal inside me, which I can't do any thing about, but can make make sure there is none outside!!

[Susan1705]

Hi, my GP prescribed vit D and calcium to protect my bones and rheumatologist wanted to put me on alendronic acid. I have had a dexa scan which was clear. I told my GP I would not take the AA drugs because of the side effects. I have been on pred for 18 months and will have a dexa scan each year to monitor.

[Bcol in reply to Susan1705]

Thanks Susan, think we are all in agreement with no AA or similar unless indicated by Dexa scan and even then, only after a discussion about the good benifits and the possible bad side effects.

[Koalajane]

My husband (no PMR) was diagnosed with osteoporosis about 6 years ago and put on AA which he was very poor at taking. He was also put on Adcal and 2 years ago was told there was an improvement and if it continued he could come off AA. He went a few months ago and his results showed his bones to be normal and he could come off AA. In the last 2 years I reckon he may have had 2 AA tablets but has taken his Adcal religiously and had more milk puddings. The same happened with me I didn’t take AA and only Adcal and plenty of walking and my bone density improved from osteopenia to normal in 2 years.

[Bcol in reply to Koalajane]

Hi Koalajane. Thanks for that, I have asked the doc to add the Adcal D3 to my prescription, so will see what they come back with. Will need a Dexa scan before I even consider AA and as I eat well and exercise daily I am not anticipating a bone problem, but you never know.

[Koalajane in reply to Bcol]

I was prescribed AA but after taking 3 tablets and getting awful heartburn, which I do not normally suffer from, my doctor phoned and said don’t take any more until you have been to the dentist. I then did some research and gave up. At this stage I was only taking d3 as I had been diagnosed with d deficiency and after a bone scan I was shown to have very mild osteopenia. My doctor then prescribed combined d3 and calcium, I take 2 x Accrete d3 a day and the following year my bone density is normal.

[Rugger]

Have you had your blood vitamin D checked? If not, ask them to add that to the list! It can be low without us knowing and needs to be topped up with a megadose for a few weeks, then the daily dose from the calcium/D3 supplement.

Hope the phone call goes well.

(I'm on a bisphosphonate for osteoporosis proven by DEXA scan, but due to stop soon as I'll have had my 'quota'. They are drugs that we shouldn't take for ever!)