PMRGCAuk
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Ask your doctor??

theguardian.com/commentisfr...

While doing some "sideways" reading of today's Guardian I found this. The doctor writing is an oncologist but I think the discussion applies to us too. Is it not concerning that so many doctors don't really know the truth about the medications they try to force on us? And it places even more responsibility on us as a result.

The conclusion reached in the original paper was

"Conclusions and Relevance Clinicians rarely had accurate expectations of benefits or harms, with inaccuracies in both directions. However, clinicians more often underestimated rather than overestimated harms and overestimated rather than underestimated benefits. Inaccurate perceptions about the benefits and harms of interventions are likely to result in suboptimal clinical management choices."

Unfortunately it is behind a paywall so we can't read the lot.

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Thank you very much for the link. I’d laugh if it wasn’t so b****y serious. I now have IBS as a result of being convinced by a consultant, some years ago, that if I didn’t take AA and PPI I would be in a wheelchair suffering from multiple fractures. Now I know better.

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Having had a few close shaves with side effects with various drugs during cancer treatments and less serious ones at other times, I lose confidence in a doctor if I suspect these:

1) The attitude that one’s symptoms can’t be happening because they are rare. That has nearly killed me three times.

2) The working hypothesis that the patient is wrong.

3) The idea that the patient has read the leaflet and is looking for problems.

4) They haven’t read the leaflet.

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I had lots of side effects from Chemotherapy last year,including deafness now wear 2 hearing aids,very dizzy seen in balance clinic following MRI head scan.I could go on and on,but saying all this the side effectswere explained to me and it was my decision if to go ahead with Chemo and Radiotherapy.I felt I would take the advice from the Oncologist and l feel I made the right choice.

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I like you suffer many side effects and allergies, have an A4 sheet that I take to any consultations. At first I was afraid to question any Doctor about meds they were thinking of giving me but after nearly killing me more than once I don't take any more s...t in fact they are all so very nice - maybe it's the A4 I present when they ask if I am allergic to anything, I Just say Doctors if they don't read my list....and I'm not making this up!

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Nice information. Forwarded it to the kids. Loved the part about “I don’t know, but I’ll find out.”

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It was a mantra I used throughout my nursing career. People do really appreciate honesty, and you simply can’t know it all.

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Having the power decisions over someones health must be awesome whether NHS or Other! Generation brainwash changes all the time in medical science world it's a good earner! Thanks.

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Hi

I found the comments about chemotherapy very interesting.

After six months of faffing about, in and out of hospital like a Jack in the Box my hubby was finally diagnosed (much too late) with liver cancer. During the previous months we were told the problem “must be his heart” despite us both saying to every medical person, “it’s not, it’s something different”. We’d both lived with his heart problems for 16 years so we knew the difference..but were we listened to.......?? Of course not.

When finally diagnosed he was told they could perform chemo..his question was “will it help?” Answer “no”, so his reply was “well don’t bother then, thank you”.

He refused to stay in hospital, so was sent home to be nursed by the local hospice team. What a difference in attitude! Nothing was too much trouble, he was told to eat and drink what he fancied (despite being diabetic) and told if he didn’t feel like taking his multitude of tablets for all sorts of problems, then don’t.

I appreciate he didn’t have long to live, but they made sure what time he did have was happy, relaxed, pain free and in his own home. If you can have a good death, then he did...and I know he chose the time to go.

But that we could all achieve such an ending.

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There is considerable evidence that the people who are confident enough to say thanks but no thanks as your husband did actually often live longer. And much better. Which is what counts.

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So agree, he always dreaded ending up like his grandparents, and the last thing he wanted was for his grandchildren to see him really ill. Luckily they didn't.

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Thank you for posting this. It gives me more confidence to question some of the prescribing decisions. It is so complex these days, we really need to be informed.

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Hi

What I find so scary in my job is that most people have no idea of what medication they are taking or why they are taking it .

I have meds training yearly one due in May but I would refuse to give clients meds .

Not only do you have to be aware of what they are taking you have to know side effects and any contraindications.

So often Chemist send wrong meds to the wrong client

I have problems remembering mine let alone clients

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Yes - "It's the little round white one for my heart..."

Scares me to death too.

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Well that was depressing. I shall maintain my approach of discussing new additions with pharmacist and by doing my own research here and via internet. It makes me want to teach sociology of science and medicine (again). Well maybe not...but you know what i mean.

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You could write us some notes...

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Thinking. Putting stuff together on a smartphone not good but will have a root in my paper cupboard!

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I would be good if you could find the time.

I’m sure many would find it very enlightening - plus of course you have no pharma salesman breathing down your neck!

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Thank you for that PMRpro, an interesting read of which the content has no surprises for me.

Many times have I been on the receiving end of a doctor’s advice which was categorically incorrect.

Apologies to members have heard this before, but.

To name one incidence, is when I consulted a doctor about increasing my prednisolone from 10mg back to 11mg because during a reduction I was finding that I was experiencing increased pain.

He then proceeded to inform me that steroids are dangerous drugs and told me of all of the side effects that steroids can cause. (Even though a doctor put me on steroids in the first place after a few months of shoulder pain and raised inflammation values ESR etc. and concluded I had PMR)

He then told me NOT to increase the prednisolone but to add Ibuprofen 400mg 3 times a day. Fortunately, due to my avid attention to the information provided by this forum and respected experts here, I did no such thing. So I decided to pursue a rheumatologist.

I managed to see another doctor and asked if I could see a rheumatologist. He agreed and said it might take some weeks for an appointment. So I decided to see a rheumatologist privately, but this is where it gets worse.

Having consulted the rheumatologist about the increasing pain due to steroid reduction and the advice I received from the doctor I previously consulted that I should take ibuprofen, his answer was “maybe he has got a point advising ibuprofen, but I will give you something more appropriate”. (or words to that effect)

He prescribed Lodine SR Tablets 600mg. I was unaware this is a NSAID.

To cut the story short, I did take them and after about a month I was seriously depressed, I was itching almost everywhere on my body and couldn’t care if I lived or died, I was in a terrible state. Without seeing a doctor, I stopped taking the Lodine (a NSAID) and increased the Prednisolone back to 15mg and started all over again. It appeared that I could get the prednisolone by repeat prescription, no one queried that I was ordering 15mg/day, month after month, and still doing it three plus years later. I have got quite a stock now, (I think I had better stop this game)

I am just self managing because it is so difficult to get a doctors appointment.

Somehow I have managed by myself to get down to 4mg/day after 3 years 3 months with the help and the knowledge I have received from this forum. This shouldn’t be the way I know, but with idiots that are registered doctors that I have experienced, I am lucky to be still here if you ask me. I think I have seen a doctor in the last 3 years about 4 times and that was for other problems. None of them ask how the PMR is going. Somehow I managed to see a doctor before Christmas and persuaded him to get me a Synacthen test that showed that my addrenals are capable of working.

End of

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Stunning! Well done with the self management Pastit. At least no fight for the Pred. ATB

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My Endocronologist said, following discussion I had with him about a Mail article on Omeprazole, 'the only saving grace is that the Mail are not medically educated!' in other words forget it - It made me smile anyway...

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Not sure I see it as a "saving grace" - I always check the stories with real medical/scientific opinion. Most readers don't - and they are then the source of a great deal of the villifying of NICE and similar authorities who, even though some of their decisions seem strange, do usually do a half-decent job, getting it right eventually.

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