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PMRGCAuk
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Frustrating telephone consultation with GP

Couldn't get an appointment so had tel consult with GP. Asked to be sent for dexa scan as I'm on Pred and it's classed as long term. Told him I couldn't take AA as it upsets my stomach. He said that if I just wanted to see if my bones are ok but wouldn't take AA or similar then he couldn't sent me. He said that my bones will definitely get weaker because of the Pred if I don't take AA or similar. I told him that the scan would give a baseline to see if there was any decline over a year etc, but he said it doesn't work like that. If I'd had a previous fracture then there wouldn't be a problem. Ahhhhh

He went round the houses saying the same things for so long. Then said he wasn't trying to be difficult but if he referred me for NHS dexa scan it would be refused.

I looked on line at NHS site and it states that dexa scan should be carried out for patients on long term steroids and states 3 months as long term ( been on them 5months). When I told GP he said it must be old information. Ahhhhhhh

At my request he has agreed to send a referral letter to private hospital to enable me to have a private scan. The scan will cost me £175, but what price good health. Should have put it on my Christmas list.

The call was so frustrating and upsetting. Could have done without the upset.

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Oh footfairy! I suppose it was that or throwing yourself down the stairs. He sounds like a stubborn man and you sound like a very determined lady. Here’s hoping that your bones are perfect and remain so for the rest of your natural etc.

Unless of course Hunt the dreadful has sent a memo out - he wants us all ( who have any money) to be screaming for private medical insurance.

On that sour note, I do wish you a very merry Christmas and a happy healthy new year! 🧚‍♀️

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Thank you SJ.

I'm usually a lot more determined than I am at the moment. Another effect of PMR I suppose.

I hope you too have a very happy Christmas and a happy and healthy New Year.

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Read with interest the comments about DEXA scan. My GP (who has just retired!) was very happy to put me in for a DEXA scan which I had two weeks ago. Today had a call from surgery to make an appointment to see a doctor re the results - is this bad news? However, as I am due to have a blood test in early Jan, I have made an appointment for just after that (with the new GP) and see what she has to say. I am really not happy about AA as two doses of that really upset my tummy and having read other people's comments, it doesnt seem to me to be a good drug. If the GP says I need to take it, I think I will ask if I can wait for a few months and then have another scan to see if there is any deterioration. Have been on Pred since May (now at 12.5) and am taking Vit D and Adcal

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If it upset your stomach you are perfectly justified in refusing to take it. There are other options is you really do have low bone density. But if it is still in a reasonable range then it is possible to improve density without drugs other than calcium/vit D and other supplements and exercise.

There is felt to be little point doing a repeat scan within a year at least - and in the NHS they say 2 years - as the changes are not quick and the technology isn't that accurate. That said, however, Heron did increase her t-score from -2.1 to -1.6 in a year - no AA.

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Hi PMRpro

Your latest post tells us that Heron increased her t-score from -2.1 to -1.6 in a year - no AA. Could I possibly get more details?

My first DEXA scan eight months after my GCA/PMR diagnosis was -2.5 Osteoporotic, I'd already declined AA after an earllier immediate negative reaction but took calcium supplements, maintained an excellent common-sense diet rich in Vit D and trace nutrients, but was too ill to continue my light weight resistance exercises - my consultant explained I had a one-in-a-million reaction to steroids and put me on MTX as a steroid sparing agent. After 10 months no improvement so stopped MTX and now, 2 years 9 months after original diagnosis I'm down to 3m pred daily.

My second DEXA scan, 18 months later has shown a -2.7 t-score but, in common with so many contributors here, the latest research findings and many ongoing legal claims against Drug Companies in the USA, bisphosphonates are also not for me.

I note that you also are anti that drug which our (UK) medics continue to push - they tried very hard with me - and would appreciate any relevant links you might have.

Shortest day today, thank goodness, always look forward to the lengthening days.

Best wishes for a Merry Christmas and a happy and healthy 2018

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Hi Dartmoorlass. I'll private message you the little essay I wrote for myself which outlines what I did, mostly so I'd remember, but I've since shared with many people.

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Thanks so much HeronNS, I'll look forward to receiving your info.

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Sent. :)

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I am sure you could have done without the upset. Like many I had pressure to take AA but insisted on scan. There was no resistance but that was 12months in. It's maddening when if you and/or partner pay in to NHS etc for years you get no benefit in cases like this. I am sorry you have to pay on top of that. Hoping you get same results as me...all ok just need to take calcium and vit d3.

Hope you have happy holiday season. 🌲

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Thank you Poopadoop.

We have and still do pay in to NHS. So I agree it is maddening. Still I'm letting that negative feeling go and moving forward. Sometimes easier said than done.

Fingers crossed regarding results.

Wishing you good health and happiness for Christmas and the new year.

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Hi Footfairy,

Can the GP supply you with proof that what he has told you with regards to the DEXA scan is correct?

It's perfectly reasonable for him to provide you with a copy of the clinical guidelines he is following.

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Hi Keyes

I don't know and never thought to ask. I'd just had enough.

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It isn't old information - and he's trying to wriggle out of paying for it I bet.

Where do you live? There are places that do it for considerably less than that - someone posted recently they were off to London for the day to have one for £65 I think it was. Southampton also do it for lots less. And I'm not entirely sure you have to be referred... (don't quote me though).

He is exaggerating. I have never taken AA (well, 4 tablets) but have been on calcium and vit D the entire time. My bone density barely changed in over 7 years on pred. I had my first dexa 3 months in for a baseline - as the NHS recommends. Celtic on here never took aa - or calcium supplements. Her bone density was fine. And there are others.

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I take 10, 000 mg vitamin D3 a week but am wary of calcium supplements, preferring dietary sources like skim milk yoghurt, fish, nuts, seeds and green leafy vegies.

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Semi-skimmed milk products are better than skim - some fat is essential to absorb the calcium and people who use skim milk do not absorb anything like as much as people using semi-skimmed or full fat.

The thing to remember though is that you need more than normal - to make up for the increased loss of calcium due to taking pred.

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Fat, say olive oil, aids the absorption of vitamin D but is unnecessary for calcium:

well.blogs.nytimes.com/2014...

As it happens, I eat my skim-milk yoghurt mixed with nuts, seeds and cacao nibs.

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You do still need fat for the improved absorption of calcium. It isn't straighforward.

This study

Factors associated with calcium absorption efficiency in pre- and perimenopausal women. Randi L Wolf, et al"

says

"In particular, women who reported consuming diets with the lowest ratio of fat to fiber had 19% lower mean fractional calcium absorption values than did women who consumed diets with the highest ratio of fat relative to fiber. ...

Further research is necessary to enable us to better understand the extent to which widespread public health recommendations for a low-fat, high-fiber diet may affect calcium absorption performance, bone, and other chronic disorders in which calcium may have a protective role."

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Very interesting. I've just searched for more recent research on calcium absorption and found this website describing several dietary factors affecting absorption but no mention of dietary fat:

ods.od.nih.gov/factsheets/C...

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Why more recent research? Old stuff isn't "wrong". It was something I learnt many years ago with a biomedical scientist background although I don't at what state it was but my daughter who did biomedical science at uni also knew it in the days of her first long term relationship so that must be the best part of 20 years ago since she used to try to persuade her "MIL" that the skimmed milk she insisted on using "because it has more calcium" wasn't benefitting her because she was less likely to absorb it.

There are many links to be found in response to a search for "absorption of calcium from skimmed milk" where they say that using skim milk breaks the chain - because the fat is required to absorb the vit D in miilk which is essential for the absorption of the calcium:

"Also, calcium absorption is enhanced by Vitamin D, but the Vitamin D needs fat, so skim milk breaks the entire chain of absorption and becomes nutritionally empty."

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I wasn't doubting your research from August 2000 although a single nutrition study gives little confidence.

Interestingly, after spending the last hour searching "absorption of calcium from skimmed milk" and similar, I was unable to find a single credible website from the last decade supporting the August 2000 study. That is amazing!

Also, it seems, calcium and vitamin D do not need to be taken at the same time.

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Nope - just has to be enough sloshing around.

But my knowledge was from way before 2000 - and loads of those papers aren't easily available via google - just paper versions. Results in a lot of reinvention of the wheel in scientific circles my husband is finding...

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Thank you you for that.

I'm in the Midlands and in my area there's only one place to have the scan. Don't think I'm up to much travelling at the moment.

It's very reassuring and I do hope I too will be fine without taking AA or similar. The only other suggested by Rheumy was the yearly injection but I'm not happy to have this as it'd be in my system even if I have bad effects from it. Then I wouldn't be able to do anything about it. Anyway, why put more chemicals inside us if we don't need it.

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Go to the National Osteoporosis website and read up on the difference between AA and the other drugs including the yearly one.

I totally agree with the other chemicals sentiment. After a few months taking those 'just in cases' I said no more, we deal with problems if and when they come along. Both my GP and Rheumy, just said fine. Mind they had got my measure by then.

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I'll take a look. Thank you. 🎄

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Contact the local commissioning group and see if they have decided that locally......just in case.

Then if the answer is no....................a letter to the practice manager that the NHS website is up to date etc.

A Dexa Scan on the NHS is about £30 in my NHS Trust Area.

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what if you say you will take the AA to get the scan and then DON'T but you will have the results. ! Terrible that he was so awful to you.

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Hi yogabonnie

He knows now that I won't/can't take AA but I didn't say I wouldnt take anything else.

Obviously he's not got the Christmas spirit yet!🎄

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Thank you jinasc. I'll check it out.

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I'd still want to be referred and let the expert make the decision.

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Totally Agree PMRpro

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Hi Rose

A very interesting article. I hadn't seen it before. I suppose what the GP said now makes more sense, even if I don't think it's a very good idea. As the article says it will not do anything to improve the patient doctor relationship.

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Rose54 this is rather backwards method of providing health care - what's happened to the idea that we should be promoting health and preventing problems from worsening?

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I think in the long run it may end up costing them more financially, but it may cost patients even more healthwise.

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Politicians everywhere seem to be intent on reining in health costs, which I understand, but denying services which help maintain health is not the way to go about it. Same issues in most of Canada, and we've never even had anything like the coverage the UK has provided. People have to have private insurance to pay for medication, dentistry, eyecare, ambulance, pretty much everything except visits to the family doctor (if you're lucky enough to have one) and hospital and emergency care.

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HeronNS

My GP always ask what he can do for me .and we are encouraged to take charge of our own health which is great but they need to provide the tools for us to do this .

Not refuse everything we ask for

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Rose, that's so nice. I never feel I can ask my doctor much or spend much time with her because in fact she took me on as a patient even when every doctor in the practice was refusing new patients (my doctor had retired and his replacement who was useless to me moved away). I feel quite guilty every time I make an appointment - she doesn't say anything to make me feel this way, it's me.

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My husband had an appointment with a gastroenterology specialist in Jan to investigate high iron levels in his blood. It has been cancelled, no explanation given, he has to phone to find out why.

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Makes sense but not right that they should have that much power

its defiantly not a good idea Footfairy-1

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Just got phone call from local hospital (at 8.30pm!)offering me a DEXA scan, which was suggested last week by registrar, she said they should be done every 3 years.....had one already, 3 years ago..and one previous when first went on steriods...going Thursday after Christmas.....how different the hospitals are.......

I would never take AA, I just have Adcal daily........

Good luck......

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Hi Longtimer

Can I come with you? 2 for 1....

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Do you think we would both fit under the scanner??......just picturing it now.....

Seriously though, if my readings have changed for the worse, I will still not take AA, ......

You shouldn`t have to go private, although I would, to put my mind at rest, but I think it`s all about the surgery not wanting to spend,........

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Can i come too. I found the raused leg cushion thing the mist comfy position with my bad back. I am considering purchasing one. Easiest scan I ever had.

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A DEXA party, what`s not to like!

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Can't wait for the party. If we get enough people maybe we could get it at a reduced price. With food and drink afterwards.

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That position is recommended for relieving strain on bad backs! My daughter hurt her back dealing with a demented patient last week - spend a couple of days in that position and it did the trick. She complained she couldn't drink her G&T easily...

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That's where the long curly straws come in

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I have about 4 pillows under knee but the thing they had there was like 6 pillows with no give. Brilliant

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I know - that's what I told her. She did improvise I'm sure!

You have to lie so your body makes rightangles at the hips and knees - pillows are too squishy...

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When I had my first Dexascan I was given a pink form to fill in and there were about twelve things that meant you definitely could have a Dexascan, one was PMR, which is surprising as it is not normally mentioned. Anyway I ticked the box and eventually had a scan. I assumed that was the same for everyone in UK, but I am probably wrong.

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Hi Piglette

Unfortunately It looks like the goal posts have been moved recently.

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Probably by the GPs...

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I think it probably varies from area to area in that case, like everything else.

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Hi footfairy. Sorry about your battle. Three months into taking pred for pmr i developed GCA and my doc (a locum) was most concerned that I take AA due to the increased dose, I asked for a dexa scan to see the state of my bones as my previous one, 7 yrs prior, was good. He ordered it up saying "if you have the bones of an elephant I will leave you alone". Sadly it showed I was stepping into osteopenia but after reassurance from this site and much reading I decide that wasn't so bad and still refused AA. The report said It should be repeated in two to three years which I did last month. I never once met any resistance and was told "what a good idea" when I first asked. A third one couldn't be refused as it had been recommended by the scanners. I really don't understand why such a difference from one practice/health authority to another. As piglette says its stated as a genuine reason to scan someone. All the best if you summon up the fight to have another go cc 🤗 🎈 🎉

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Thanks Carrollee

This is the second time of asking at GP surgery. The first time I was just told no you don't need it. I also asked the Rheumy who said no too. I've only been with the surgery for 11 months (since we moved house) so I don't know any of the doctors well. The lovely doc who first diagnosed me with PMR has left the surgery😩.

Think I'll just go privately and save the stress.

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Thanks for sharing. I had exactly the same conversation with my GP. I've been on pred for 8 mths and I have also refused AA but because of the research papers I've read. Good idea to ask for private scan I shall follow your lead. Can't face more fights with GP! Happy Christmas to all

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It`s sad patients having to pay for these things, it always makes me think, what about those in a situation that can`t afford to go private, the surgeries that are making these decisions, don`t seem to care about that.....sometimes it must be counterproductive......well that hopefully is my last rant for 2017..........

Happy Christmas to all.......we keep on with the battle!

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Hi Longtimer, you could argue that if people go private there is more money left to pay for those who cannot afford it. If no one went private I should imagine the NHS would have major problems, particularly for elective surgery which is pretty bad anyway.

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You could argue that but the real problem is that the wealthy, I mean the real wealthy, the ones who have so much wealth they don't know what to do with it, they aren't paying their share of taxes into the public coffers. This is common in most of the English speaking developed world now. It seems odd to me that once upon a time we were able to afford a much more secure social safety net, and now it's full of holes and the politicians say there's no money to mend it. Rubbish. The money has simply collected into hands who don't spend it for the public good.

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Thanks Jan200

Glad I'm not the only one. Happy Christmas x

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Like you I can’t take AA as it upsets my stomach. I have asked for a scan and my doctor has requested one but says it may not be approved. I have been offered the annual infusion. I live close to Nottingham so wonder if anyone does a private one around here. Anyone know?

Liz.

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Footfairy-1. I don't think the GPs like it if a patient knows more than they do about their PMR/GCA conditions. Yours seemed to have an answer? for anything you said. I had a fall, in a shop, in January...uneven shop floor, but that's another story. I had, and am on ,1 Ibandronic Acid tablet, monthly. This could be the reason why I had no fractures, only shaken up and very bruised.When I asked my GP, recently, if I could have a Dexa, he said I had to wait until April, next year, as I could only have it every 2 years. I am concerned about the bone loss, in my feet, as my shoes are too big.Hope you find better medics, soon.

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So sorry, doctors really have a way of getting us to the end of our rope.

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