Rheumy app and Zelondronic Acid!

Agree!!

I stopped AA after a month because of the horrid side effects.  Went to see my GP and asked for a dexa scan as a baseline but he said OK to stop and see how you get on!

I will stay strong, because over the years with ME/Fibro, you get used to horrible crass remarks...like, oh but you look so well, and yes I get tired!!....

Those people that know me....know that I am a doer....and have always struggled with being held back with pain/fatigue, my head dosen`

Don`t know what happened there Tina, but what about to say dosen`t match my body!....and when PMR came along too.....and then the rheumy, no it dosen`t help, but......won`t let her get to me.....I made it clear I am doing the very slow method of reducing pred with my doctor`s support.......I got a look as you can imagine!......Thanks Tina...

And I knew I'd forget one rant - so giving drugs as injections means they don't have side-effects does it? That's another amazing piece of medical science and one that could prove very useful! They may have DIFFERENT side effects - that isn't the same...

Entirely agree with all the above!  and did challenge her on side affects with injections, she said you got side affects with tablets because they went through the gullet, and injections do not!  Give me strength!....now you can see why I call her the smiling assasin...she`s lovely when she says hello and shakes your hand, and then.........

I said to her before I left, you really don`t like steroids do you, she replied, they save lives but do untold damage while you`re on them....especially a s long as me!  (3 years)

Ps she said my CRP was 1  that is all I heard her read out....

She obviously doesn't appreciate the difference between the gastric/oesophageal side effects of bisphosphonates and the basic problem for patients with fibro/ME who often don't tolerate medication. Who were you under for the fibro/ME? Don't rheumies do that too? If so - god love her fibro patients...

Was never sent to her for ME/fibro, but told her this morning (and have previously) that I have these also, and that I do not tolerate meds at all, she said this is an injection so wouldn`t affect me.(end of!0...she has left it to me to tell her within a week as to wheather I want it or not...she said I`m protecting your bones, and it`s no good coming to me when you have Osteoporosis...fat chance of that! 

i only want to make that decision when I know what my dexa scan readings are....What is "within normal range" Eileen can you tell me that please...Thank You.....

What about me too!! I have a pretty mean mouth on me, and as for my right hook, well we won't go there!! Tina

Google it - this is the link to the professional page on this site

https://patient.info/doctor/osteoporosis-pro

but it is pretty complex for a lay person to read. The patient page here is useless, doesn't tell you anything you don't already know. 

On the NHS page it says:

"The difference between your measurement and that of a young healthy adult is known as a T score, and the difference between your measurement and that of someone of the same age is known as a Z score.

The World Health Organization (WHO) classifies T scores as follows:

above -1 SD is normal

between -1 and -2.5 SD is defined as decreased bone mineral density (BMD) compared to peak bone mass (PBM)

below -2.5 SD is defined as osteoporosis

If your Z score is below -2, your bone density is lower than it should be for someone of your age.

Although BMD results provide a good indication of bone strength, the results of a DEXA scan won't necessarily predict whether you will get a fracture. 

For example, someone with low bone density may never break a bone, whereas someone with average bone density may have several fractures. This is because other factors – such as age, sex or whether you have previously had a fall – will also determine if you are likely to sustain a fracture.

Your doctor will consider all of your individual risk factors before deciding if treatment is necessary."

It's the T-score that is important, the Z score is pretty meaningless.

If you had your readings I could tell you what they're like - demand them from your GP, they should be able to get them.

And call the National Osteoporosis Society - their helpline is said to be superb.

All welcome...

Wonderful thank you.......

why is life such a battle with the NHS...I have rung doctor`s for dexa scan results, they were never sent through to them!  now had to ring the dexa scan people, they are going to fax them through  to  my doctor......and I ring again later....now I need a lie down, but of course it`s all in my head!!  How do those poor people cope who don`t have our lovely friend google to find us this info....god help us if he gets PMR!!  Thanks again!

It all sounds unbelievable, it is frightening it is actually true. I wonder if they would take the same attitude if they had PMR. What is amazing is they cannot even organise the paperwork and still use faxes. What century are they in? It really makes one angry. No wonder we are all stressed. 

Yes, it finally got faxed through, this afternoon, my doctor is ringing me in the morning...all I want is a straight forward answer to a question... what are my dexa scan readings?? so I can make the decision.....  what`s the bet, I don`t get it!....I just don`t have the faith any more.....Will keep you posted....

Linda, Perhaps we should open a book on when will you get your Dexascan readings! I have wasted so much time trying to get readings from various places. I was seeing a rheumatologist privately and they refused to give him my blood test information as he was not on NHSnet. I am sure millions of pounds could be saved if they invested sensibly in IT and also improved their management ability. Us patients might benefit as well.

If you are seeing someone privately, surely they should be doing blood tests as well.

Why should the NHS contribute to the private sector and save them money. 

It is just like when you go for a private operation in a private hospital and something goes wrong - no ICU,  no High Dependency Unit, not on hand a Consultants of every discipline - so they either dial 999 or call an ambulance and who puts it right, the NHS. 

They are other bio-phosonates, visit the National Osteporosis website site and read up on them  - there is even a yearly one called Densumab.

 I initially had private blood tests, but then I was having ESR and CRP each month. The only reason I went privately was because The NHS failed to diagnose the PMR and in the end I was in such agony having been told I had a virus over a period of three month I raided the bank and saw a rheumy privately.

Hi Ptolemy, I also paid for blood tests pre diagnosis because the initial blood test I had done at the gp's surgery came back showing various problems. The locum GP ordered me to have more in depth blood tests that included ESR/CRP, gamma gt. when I then went to reception to book the blood test I was told that there was a 6 week waiting list for non urgent blood tests and the tests ordered were considered non urgent. By that time I had actually been suffering from symtoms for 2 months and was in agony so I had the blood tests done privately within 2 days.

these tests set me back over £400.00, an amount I could little afford at that time but I was so ill I would have spent my last penny on them. By the time I actually saw the rheumatologist NHS, he commented that he was disgusted that I had been given such poor care and that although iwas atypical (52 years of age) my symptoms were classic and I should have received treatment of this condition months earlier. Regards, tina

Hi Tina, I really sympathise. I could not have waited much longer, the pain was excruciating, I was on the verge of taking a one way ticket to Switzerland! I think my tests were three hundred and something pounds. I was able to pay by credit card which helped.  A bit of a shock, but at least I then had a diagnosis. It makes one realise how much the NHS is giving us for no charge when we have blood tests. 

One of the problems here of course is that non-medically qualified people were deciding what was urgent and what not. You need ESR and CRP done in a query GCA patient - and that IS urgent, it is a medical emergency.

 Six weeks for blood tests is totally unacceptable and needs reporting - it isn't up to the receptionist to decide which is which. Had I been faced with that the doctor and the practice manager would have been called in. I might have been chucked out of the practice ...

It is getting worse and it is going to continue its downward spiral I'm afraid.

There is one lady who commented on another forum who is a retired GP who now has PMR. As a GP she pestered her patients to reduce, reduce, reduce. Now she knows what it is like she admits her attitude has changed dramtically and sees now that 1mg here or there is peanuts!

I am a great believer that all healthcare staff should spend a week on the other side of the hospital blanket. The ones who have a health problem themselves are often far more helpful.

You are right it is getting worse. We have had five Practise Managers in eighteen months. As soon as I learn their name they disappear. We have not had one for two months, but a new one arrived last week called Jill. I wonder if she is still there! GPs seem to disappear too, we are down to two with five locums.

There are a lot of GPs who are getting to retirement age - really, not just naffing off early because they can't stand the stress any more. There were a lot from my generation of medical school and we are all now in our mid-60s so high time to go and play golf all day.

The whole set-up also contributes - the day of the son taking over dad's practice is long gone, they simply haven't the money to be a senior partner and set up a modern practice building. Despite what the media claim about stinking rich GPs on massive take-home pay the truth is that that £100K+ salary doesn't just pay their salary, it also has to pay for the receptionists and other ancillary staff who are needed as well as maintain the buildings. And in some cases to employ other doctors to keep the numbers up.

Medical liability insurance is megabucks these days too - and essential. One peer of mine at med school became a GP and lost everything because a woman claimed he'd behaved inappropriately. The police had to investigate, 4 other women said much the same. Eventually at the trial it emerged the first woman was mentally ill and had made it all up, the others had just jumped on the bandwagon and the jury was directed to aquit him. In the meantime he'd become depressed and was drinking rather too much. As a senior partner he had no income and now next to no future. The women got off scot-free with their lies - whereas a few days after he was cleared by the medical authorities he dropped dead of a heart attack.

That isn't an isolated story - would you encourage any young medic to head for general practice? I wouldn't. My paramedic daughter was seriously considering medical school - I firmly discouraged her! 

Hello Eileen, by the time of my rheumatologist appointment if I hadn't gone private for the bloods then under the GP surgery they would not have even been done, so what would the rheumatologist have had to see if inflamation levels were high or not.

as it was, he queried the test lab that the bloods had been processed at, and I told him the history of my GP practice up till then. It was at that point that he told me how disgusted he was and that he would ensure he wrote in the report that he required me to have my bloods done every 6 weeks, which he did.

Directly the receptionist told me that I had to wait 6 weeks for a "routine" blood test i did request to see the  practice manager. She informed that the practice was short of staff and that the surgery has to prioritise appointments as they had a duty of care to all their patients, not just me. When I replied that as a patient the internal staffing problems were not if my concern and that the only duty of care that I was interested in was mine, she said I was selfish!!! I tgen demanded a referral letter for the bloods to be done privately and she said that she couldn't do that because it was against NHS guidelines. I told her that she had until close of surgery that day to get me a referral letter otherwise I would bring the national media down on the surgery and report the surgery tothe authorities. At 2 pm I received a call to say that the referral letter was ready.

following my diagnosis there was no way I was going to return to that surgery so I registered with another surgery and they are fantastic. When I took in the registering firm to the surgery I was offered a new patient appointment the next day. Then when I saw the nurse she discussed PMR with me and when I said to her that she was very informed about the condition she replied that every clinician worth their salt would know about it!

as for your last paragraph, although I still receive brilliant care from both my GP and my rheumatologist I have to have agree that the NHS is spiralling out of control, with some departments as we speak absolutely unfit for purpose. Regards, tina

How awful!  I have been going to the same surgery, three resident doctors, for the last 25 years and one of the doctors has been MY doctor all that time.

We're like old friends.

I remember you saying you'd moved practice - the other one needs sorting out though. There are a few people on the forums with similar experiences with practices who don't care.

One wonders if they'd have said they hadn't time to care for a stroke patient because they turned up at the wrong time! It would be funny if it weren't such a serious problem. You should have reported them - if only for the sake of the remaining patients - but it is such a pain in the butt...

Well, the plot thickens!!  I have just had my surgery ring ( a locum I think) and when I said I wanted to make a decision weather to have  an infusion of Zelendronic Acid on the results of my dexa scan,... wait for it....she said that`s strange I don`t have that,... well I said, it was faxed through to the surgery yesterday!!, to which her reply was......... any way, I have it on the screen that you are osteopeanic!  to which my reply was, well how can you come to that decision with out the results!! ye gods, I despair, putting it mildly, what I think I can`t print here!.. she said I would recommend you have the infusion, but that`s your decision! Challenged about side affects, she said some people feel fluey, but that wears off!  I`ve gone completely round in a circle, and got nowhere.!!...Think I`ll walk out to my sunny garden and scream!.....

You know what Eileen, pre PMR I would have relished the prospect of a good legal fight, (a reminder of my uni days when we had to hold motes, especially for contract, land and criminal law), but now I don't think I have the spirit. Ah, here's hoping maybe soon, regards, tina

Linda I know how you feel, you begin to think "am I going mad or is it the rest of the world"? I have decided it is the rest of the world, along with the sad death of common sense. 

The young trainee GP who has moved in to me next door and is doing his last six months in a local hospital, worked 104 hours one week and 96 hours the next.   His wife is a registrar in another hospital.  Both are just waiting till he has completed his training and has one year of GP practice under his belt.     They have a little boy of 2 who is in a nursery and some weeks one or other of his parents do  not see him at all.  

They are talking of emigrating.

It is absolutely unbelievable what young trainee doctors have to put up with, and the money they receive is a joke, considering the hours they work.

Grrrrrrr! You can be osteopeneic without being anywhere NEAR osteoporitic - I am! My results include the word osteopeneic - but no-one wants to treat it yet. A decision to take medication should be made on a fully informed basis - and unless you see the REAL figures you can't be fully informed. 

Poor neighbours - don't scream too loud if they might be having a nap 

My neighbours are very good....thank goodness, they often ask, how are things now?  and I almost daren`t tell them!....but when you talk to people, and read on this forum, nothing unfortunately seems to surprise anyone anymore....and yes, I think it`s going to get worse....

I really don`t know what to do about the infusion, and I don`t want to recieve a drug unless really needed, and of course the (maybe) dreaded side affects....I feel so ill some days already...I just can`t see how it can be so difficult to get the results...but I`ve nowhere else to get them from...I quoted to the rheumy, that on the forum that I go on, some people have been osteopenic for years, and the situation hasn`t changed for them, while taking steroids, and they are`nt taking medication for it...her reply, you shouldn`t be going on forums...my reply......but it`s patient uk, written by doctors like you!!......she went very quiet.....and then gave me a week to make up my mind....

If you can't get the answers from your GP then you COULD go and have a dexascan yourself privately, they can be done for about £55.

You know which department it was who did the scan I assume? You could try ringing them and tell them the GP has lost the results and you would like to have a copy for yourself - which I am fairly sure you are entitled to have. Nothing to lose there.

Thanks for that, will try on Monday, when this heat subsides I hope!!  Expect it`s even hotter for you!

Um - no! It's pleasant today, about 24C. The "Spanish plume" is taking the heat to France, the UK and Germany - not likely to get here it seems though it is to get much warmer again on Wednesday after a decidedly UK-like spell for the next 3 days with temps 19/20C and rain! Yuk - as I've now got time to enjoy some nice weather...

Lets hope then they`ve got it wrong, as they often do....