Alendronic Acid?

[jlyndauk2002]

Hi all, just had a phone call from my doc telling me off basically for not taking the AA! I was prescribed it in March last year but didnt take it after reading up about it.I mentioned about a bone scan but he said they didn't do one for PMR!! He told me I must take it and I said I would give it a go. I am seeing a Rhumy next week for the first time and will also discuss with him. I started on 20mg of pred in March and have been reducing slowly with a few hiccups and on 13mg at mo. Sorry about the rant but I was a bit upset as he didnt even ask how I was feeling!! Hope everyone Keeping well. Cheers Jen

[Hidden]

Hi Jen

No wonder that took you by surprise, it's a DEXA Scan you need not a Bone Scan, so you could ask your Rheumatologist about it when you see them.

I'm just waiting for my next one & it'll be interesting to see if my Oestopenia has improved.

Best Wishes

Mrs N

[SheffieldJane in reply to Hidden]

Hi Mrs Nails, what is the distinction between DEXA and Bone Scan? I think my doctor referred to a bone scan.

[Hidden in reply to SheffieldJane]

Hi Jen

nhs.uk/Conditions/DEXA-scan...

This link explains the difference, which will be helpful when you see your Rheumatologist.

Mrs N x

[SheffieldJane in reply to Hidden]

Thanks for this, that is the scan I had. Sheffield Jane

[jlyndauk2002 in reply to Hidden]

Thanks for the link Mrs Nails

[Hidden in reply to SheffieldJane]

Hi Jane

nhs.uk/Conditions/DEXA-scan...

Think this explains it quite well, I've had both, the DEXA or DXA Scan when I started steroids & l had a Bone Scan following my Breast Cancer diagnosis & they injections a radioactive isotope for that so it's totally different.

Mrs N x

[PMRpro Ambassador in reply to SheffieldJane]

"A DEXA scan is a special type of X-ray that measures bone mineral density (BMD). DEXA stands for "dual energy X-ray absorptiometry". This type of scan may also be called: a DXA scan. a bone density scan." It only looks at bone density.

"A bone scan is a nuclear medicine test. This means that the procedure uses a very small amount of a radioactive substance, called a tracer. The tracer is injected into a vein. Areas where too much or too little tracer has been absorbed by the body may indicate cancer." It doesn't measure density.

[jlyndauk2002 in reply to Hidden]

Thank you for the info, I will certainly ask the Rhumy for a DEXA scan when I see him. Cheers

[SheffieldJane]

Hi Jlyndauk2002, I am sorry yet another doctor has made a patient feel like rubbish. The way they promote this powerful drug anyone would think they had shares in it. My GP told me that I would end up in a wheelchair without it. Yet the potential side effects to my mind sound worse than that. I had a bone scan which showed above average bone density for my age. When I repeated this result at a later date it was denied by the same doctor. The rationale behind having a bone scan is to assess you for the dangers of taking steroids, not for PMR which is not a bone condition anyway.

What a nightmare some medics turn this disease into. Thank God for the sanity of this forum.

I wish you a wise Rheumatologist, a good recovery and enduringly strong bones. This is ranter's corner so rant all you need.

Some of these hard drug gamble decisions have to be ours and ours alone. Not easy at all.

Good reducing Jen!

[HeronNS]

Unbelievable! No one should be prescribed these powerful drugs unless it's proven they actually need them, and a DXA scan is really the only tool we have. If you are on pred that is a significant risk factor but I and others have shown you can counteract the bone-thinning effects of pred by careful use of food, supplements and exercise. And in fact many people do not suffer any significant bone-thinning effects from pred. I read somewhere that calcium hydroxyapatite is the best calcium for people on pred as we apparently absorb it better. Otherwise calcium citrate is a good choice. Never take calcium and pred at the same time. The other risk factors include a previous fracture as an adult, and age, of course. Personally I wouldn't take the bone drugs unless I had no alternative, and as we know food and exercise are effective strategies best to try them first!

Please don't be browbeaten into taking the drugs unless it's proven that you need them.

hindawi.com/journals/jeph/2...

[HeronNS in reply to HeronNS]

Oh, should add that it's now recommended NOT to prescribe for "low bone mass" aka osteopenia. The drugs should not be taken for many years.

[piglette]

Your doc should have realised you were talking about a bone density scan not a bone scan, I hope they were not being obtuse. It is rubbish you cannot have a Dexascan though as it is recommended for anyone diagnosed with PMR and taking steroids.

[PMRpro Ambassador in reply to piglette]

The more I hear on the forums - the more I suspect obtuseness...

[piglette in reply to PMRpro]

I think we are in La La Land!

[Steve2002]

My mother is 92 and lives in an elder's care facility in Lynchburg, Virginia called the Summit. She had a fall last October and broke her pelvis and wrist. Fortunately, she seems to have made a full recovery. I asked her if they had prescribed biphosphonates for her fragile bones and she said no. I have very high confidence in the medical staff at the Summit, and the fact that they are not prescribing this stuff is another reason for me to be suspicious of it. After being diagnosed with PMR last year, my DEXA scan was borderline and my Rheumy prescribed A.A. but after a little research I respectfully declined. The second DEXA a year later was the same, and I respectfully declined the A.A. again. It's your body, Jen, and I hope you don't let anyone bully you into taking any drug or undergoing any procedure that you don't have full confidence in. Good luck!

[jlyndauk2002 in reply to Steve2002]

Thank you Steve

[Doralouise77]

I stopped taking my biphosphonate some time ago and was reprimanded by my GP.....and then had the pharmacist calling to ask why I hadn't put in for a refill, something never done before.....like someone said, it's as if they have shares in these drugs lol....if I find my bone density has decreased I might reconsider but not at the moment....stick to your guns 😊

Cheers

[HeronNS in reply to Doralouise77]

This article will give you some fuel to stand your ground:

consumerreports.org/cro/201...

[markbenjamin57 in reply to HeronNS]

Thanks HeronNS, this makes for very interesting reading.

Like a few others here, I was roundly told-off like a naughty child by my GP when I 'confessed' to not having taken my originally prescribed AA on the basis that I am relatively young and fit (age 59) to get PMR, male, have absolutely no history of any kind of bone fracture, have always done sports and weight bearing activities, and believe that I have a sufficient dietary intake of calcium (e.g. healthy balanced diet, drink plenty of natural whole milk etc).

And, as if the side effects of the Pred aren't enough to deal with (!), my gut feeling was that yet another powerful drug in the system (and its corresponding side effects / risks) just weren't justified given my overall health history and risk profile.

At my most recent check up, all bloods were 'normal' including inflammatory markers and I'm signed off by my rheumatologist (albeit still struggling at times with PMR / Steroid withdrawal symptoms at +/- 7mgpd. On the subject of long term steroid-induced osteoporosis risk, I suggested to my GP 'how about a DEXA scan to confirm if my bone density is ok and whether or not I need to be on this stuff (AA) in the circumstances?'

He was clearly NOT wanting me (or maybe his surgery - due to the cost to them?) to go down this route, dismissing the idea of a simple, conclusive (?) DEXA scan (I wonder why..?) and played the 'Constructive Discomfort' card on me, saying: 'well, what would you prefer - take the AA or fall over and break your leg?'. I was too indignant to respond at the time, but this thread has ignited my desire to re-visit the conversation armed with the article provided by you (HeronNS) - thanks.

My conclusion? I support the scepticism from some here that some (and I stress, some) GPs have 'alternative' interests in either pushing certain interventions or avoiding them aside from clinical efficacy (if that's the correct term?). The pharma industry is vast and massively profitable globally - and I've read somewhere about the incentives frequently offered to GPs by pharma sales people to 'push' certain of the more in-demand / profitable drugs where the risks might outweigh the benefits. This topic has been rumbling around for a long time with other drugs like Statins for one. That said, I appreciate that it's a complicated subject and context is all....

So, Conflict of interests? Obtuseness (sic PMRpro)? Obfuscation? Conspiracy Theory? Trust Issue? As a few expert and well-read contributors here have said, do your homework and get down to the facts.

Crikey, my brain hurts after all this thinking - better open the red wine (I am told there's lots of calcium and other 'good stuff' in it..). It works for me

Best thoughts all

MB

[piglette in reply to markbenjamin57]

I just do not understand some doctors, they are quite happy to dole out drugs so you can set up your own pharmacy, but will not let someone have one Dexascan. Why can't they just follow the rules, pred, vit D and Calcium, Dexascan then if necessary AA? It is very simple.

[markbenjamin57 in reply to piglette]

Makes absolute sense on the surface piglette, but I come back to the topic of who pays for what, at what cost, and the potential conflict of interests for GPs (and the consequences for patients) surrounding all of this - unless the patient's situation is life threatening of course.

For better or worse, our GP surgeries in the UK are now 'businesses' in their own right and Performance Managed according to a higher authority (the NHS?). It seems that, to continue to operate and get funding, they have to meet externally imposed targets which are not only unrealistic but often in direct conflict with the quality of the service and support that most want to provide.

I've worked as a Consultant in the corporate sector for many years, and have seen this phenomenon many times (delivering a true quality of service vs. hitting 'performance' targets). A real conundrum for all of us in the age of 'Efficiency'?

MB

[piglette in reply to markbenjamin57]

You are absolutely right MB. It results in people seeing their doctor with a septic toe and having their blood pressure taken because the surgery gets points. When I was first diagnosed with PMR the GP was more interested in doing a smoking questionnaire (I do not smoke) than talk to me about the PMR. I believe that the QOF system is to be discontinued, not a minute too soon. Xrays seem to be at premium in my surgery, although they do seem to hand out drugs like there is no tomorrow. I have turned drugs down, but I am sure a lot of people without my background happily accept them. Of course Bevan should have stood up to the GPs in 1948 and made them part of the NHS rather than them having their own little fiefdoms. It will be a brave government who takes them on methinks.

[markbenjamin57 in reply to piglette]

Thanks piglette. Although I confess to smoking lightly, I had the same experience of being suspected by my GP of having smoking-related COPD as a result.

It was later (nearly too much later..) that they discovered that it was in fact Bacterial Pneumonia (the type you catch from someone / somewhere) was the real cause of my severe chest infection - and only after I hammered down their door after some scary symptoms - that they referred me to the local hospital for more reliable tests including a CT scan. Result: CAP (Community Acquired Pneumonia), 2 weeks of antibiotics, lung function almost 'good as new'.

The paradox is that my local GP surgery who know me of many years jumped to grossly inaccurate conclusions about the cause of my chest infection despite this: but my local NHS hospital (who don't know me from Adam) were brilliant in diagnosing it within a couple of hours. Result!

I agree with much of what you say here, it's a shame that things have changed so much in the interests of Performance and Target management at the expense of Quality so often ..

[PMRpro Ambassador in reply to piglette]

Yes - I started to reply that it was to be stopped and then wondered if I'd been hallucinating so deleted it!

And yes - a basic mistake in 1948 has had many repercussions...

My husband had a persistent cough - 3 lots of abx that did nothing later they handed him a peak flow meter. Oh, it must be asthma - here, use this inhaler. A couple of days later he coughed up some blood but, as he couldn't get an appointment until the late afternoon, he went to work. Luckily. A colleague asked him how he was and he told her. She handed him a referral for a chest x-ray - and that resulted in a bronchoscopy before he'd have seen the GP. x-ray was an open-access service, they could have (and should have) sent him as soon as the first abx didn't help and definitely before dx'ing asthma and the oncologist would have had a bit more leeway. He survived - but it was more luck than judgement.

[PMRpro Ambassador in reply to markbenjamin57]

If you are under 65, whether male or female, then you should have been sent for a baseline dexascan and given calcium and vit D supplements. It says it quite clearly in the BSR guidelines which have been in existence for at least 6 years. I know several ladies of more advanced years than you who DID get scans and were told they had excellent bone density - and AA would NOT be appropriate. If your bone density had been low - THEN you debate the AA question, or take up appropriate measures to increase bone density. Which can be done quite quickly - as HeronNS will tell you.

In the UK they are not allowed to give/receive incentives - the pens were actually quite useful in an NHS where you can't hold on to a pen for 5 mins if someone spots it is a good one but that source disappeared into the ether...

Of course your blood markers were "normal" - so they should be if you are on a high enough dose to manage the inflammation. No inflammation equals no trigger to raise the proteins (CRP) and no increased ESR either. It doesn't mean the illness has gone away.

[markbenjamin57 in reply to PMRpro]

Thanks PMRpro, great words of wisdom from you as always :-).

The Sun's setting in the west now, but will be keen to keep up with this thread and all of its twists and turns.

Best wishes

MB

[PMRpro Ambassador in reply to markbenjamin57]

It might be interesting if it set in the east

After 2016 into 2017 nothing would surprise me though...

[markbenjamin57 in reply to PMRpro]

I once took a holiday on the north coast of Norfolk, on a caravan park facing the sea. The sun seemed to set in the 'east' (to the left) and rise in the 'west' (to the right). Confused.com? It took me 3 weeks to work out that this was because I live on the south facing south coast of Somerset also facing the sea.. and that was pre-PMR and brain fog!

I agree, as for the events of 2016/17, you couldn't make it up!

[PMRpro Ambassador in reply to markbenjamin57]

I realised about half an hour ago why DT seems so familiar:

“When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.” “The question is,” said Alice, “whether you can make words mean so many different things.” “The question is,” said Humpty Dumpty, “which is to be master—that's all.”

[markbenjamin57 in reply to PMRpro]

Yes, PMRpro. DT - a Master of ambiguity and weaving words in the nature of 'Alternative Facts' (sic)! Enough said, methinks?...

[HeronNS in reply to markbenjamin57]

Had a week in New Zealand and it made me realize for the first time how even we urban dwellers orient to the sun. Leaving the hotel room the first morning I said we should leave the curtains closed because the sun would make the room hot. But of course, as we understood later, it moved around the back of the room so didn't shine in at all after early morning. And we were completely directionally challenged. One day an amused schoolboy took pity on us and asked us where we wanted to go, and gave us directions, and it was all because the sun wasn't moving the way we expected it to!

[markbenjamin57 in reply to HeronNS]

Love it HeronNS! This reminds me of my favourite tale of The Emperor's New Suit - and how innocent clarity of thought can 'trump' (if you will excuse the political pun) other / older people's maybe less accurate interpretation of the facts (or the truth..?) !

[HeronNS in reply to markbenjamin57]

Trying to figure out how my anecdote relates to Emperor's New Clothes. ❔

[markbenjamin57 in reply to HeronNS]

Nothing implied HeronNS, it just reminded me how, sometimes, adults can learn from children - and not the other way round!

[PMRpro Ambassador in reply to markbenjamin57]

Sort of "out of the mouths of babes and sucklings..."

[HeronNS in reply to markbenjamin57]

It could have been anyone. My anecdote was about how we are connected to our own physical latitude.... Next time I tell the tale I shall not muddy the waters but just say, more boringly, "a Wellington resident."

[jlyndauk2002 in reply to HeronNS]

Thank you Heron this makes interesting reading! I have noted a few points to discuss with the doc and Rhumy

[Gillymar]

Keep ranting. I was walking on a broken femur for two years due to AA bisphosphonates. Now having trouble with the other leg awaiting result of MRI scan last week.

[jlyndauk2002 in reply to Gillymar]

so sorry to hear that hope scan result is good.