theguardian.com/society/201...
I just thought this is an intriguing concept about how our doctors consistently push medication on us. And one that maybe it would be a good idea to adopt.
Is medicine a threat to health? : theguardian.com... - PMRGCAuk
Is medicine a threat to health?
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What a great article - I couldn't agree more. The GP tried to push all the extra drugs on me when he prescribed pred, but I've opted for the diet & lifestyle alternative (rightly or wrongly - only time will tell!).
To be honest, when I was first diagnosed with PMR I thought I'd be able to cope without the pred by taking supplements & making changes to my diet, but I quickly realised I'd have to the take the drugs in this instance, unfortunately!
Well, as you know steroid is poison for a start according to my doctor!...to which I replied, isn't all medication?....yes, was the reply, why she is a doctor beats me😏
What's the saying? Choose your poison?
I don't have a problem taking pred - what I don't want is all the other stuff where there are options. It is possible to reduce weight gain and the risk of diabetes by diet. It may be boring not allowing myself to stuff my face with pizza and cakes instead of popping the metformin or whatever - but it does have fewer side effects. No bisphosphonates, so far no statins - what else do they try to force on us?
I have a friend who was diagnosed with Type 2 last year. She is still eating far more carbs than I did even pre-pred - because her GP told her there is no other way to deal with her high Hba1c besides eating carbs and taking metformin.
Oh dear not good...I have kept my weight down, (lost 16lbs) do have a dessert when with fami!y on Wedneadays......but since cutting carbs (and obviously sugar) my appetite is less, but last blood test showed hba1c had risen to 41....so don't know what else I can do really...
My doctor isn't happy that I don't take a biophosphonate(obviously a poison!) and I should, because I am now in osteoporosis range......but tried a couple at beginning of PMR, horrendous pain....so what to do?
How strange - though 41 is still in normal range. Which for someone on steroids is pretty good I'd say. Steroids, stress/depression, lack of exercise and being unwell all raise Hba1c - sure you can tick a few of those?
I wonder if the NHS is partly to blame, we seem to have mainly become passive when it comes to our health. We expect to see a doctor and expect to be treated. The doctors expect to treat us with a medecine. That's the way its been for 70 years and people are creatures of habbit. That's why antibiotics are now a problem.
Things are moving slowly in the right direction but change is slow on both sides. There are probably more people than average, on this forum who are interested in controlling their own health by diet etc. I have been lucky to learn from them. We are more likely than most to question. Unfortunately we have no choice.
Before PMR I took no regular medecine those I take now are as a result of pred side effects.
I'm not knocking the NHS but we have become lazy and dependant as a result of it.
I'm not sure you can blame the NHS entirely - the media perhaps who will persuade us there is a pill for every ill. This new weight loss pill for example - 9kg over 3 years doesn't really strike me as a miracle. We grew up with the NHS - but we bought our own pain killers, plasters and so on. They are cheap enough - here they aren't covered so the health service here doesn't pay for them at all. It's a complex problem - but knowing what is a medical problem should be part of our learning skill set. Because a broken nail isn't - and 999 has been dialed for less!
Do so agree about lost skills and it being something we should learn but who teaches the parents to teach the children?
There is a facinating TV prog at the moment ,' 999 what's your emergency?' It is mind blowing......
'my pizza hasn't turned up......'
' do you have the number of a taxi?'.....
Does show brilliant the paramedics are tho.
Like one time when someone asked what temperature to cook the turkey!
Not to dismiss the good work they do but The drug companies with their vast resources have a lot of responsibility in pushing medines out to doctors and consumers. People also expect to get a pill from the doc and doctors do need to stop over prescribing. The public should also take more responsibility for their health as I think there can be an over dependency in the NHS. That’s my soapbox rant over!
Scats did you see what I wrote. I am with you xxx
An interesting article. So many of us on this forum are here, I feel, because we have an interest in our health and want to take some responsibility for what is happening to us. Once you have got over the euphoria of the first few pain free days after starting prednisolone you realise the enormity of the long term situation in which you find yourself. It was then that I started to ask more questions and decline the 'add on' drugs that had been automatically prescribed to me without any explanations or questions from me.
2.5 years into this condition I absolutely recognise the doctors don't have the answers and this is the first time I have found myself in this type of situation. I challenge a lot and read a lot and share information from this wonderful forum. I think this helps me to deal with PMR. I have made some dietary changes which have definitely helped.
Many friends I know seem to have little interest in researching, asking many questions or making lifestyle changes but instead opt for taking the 'magic' prescribed medication and assume all will be well because the doctor says so. I do understand that not everyone has a long term condition and not everyone has the time but I am surprised about the reluctance to question.
Very interesting, thank you PMRpro. I have refused to take three medications after researching the side effects.
A herbalist once told me that there are plants out there which can cure all our ailments, we have yet to find them!
That is true but for convenience and dose control science has made most of these plants into easy to take pills. These are also safer when you understand how few plants most people can recognise. Although there is above average plant knowledge shown here, how many of us would confidently know what to use.
Prima rose I think king Solomon said that somewhere! Xx
~Would love to know what herbs are available to treat genetic heart arrhythmia's Primarose?
Have developed more episodic spikes in b/p and constant flutterings in chest.
Cardiologist wants me to start Flecainide Acetate 100mg - I am terrified to put one in my mouth after reading caution with this drug - my body, especially gut is so sensitive to even the smallest amount of most drugs that it concerns me greatly.
I have always opted for more natural alternative if possible & do all the right things but I am beat over my heart issue presently.
As the article PMRpro has kindly posted states & I quote - YOU CAN'T DRUG PEOPLE INTO BECOMING HEALTHIER.
Just looked that drug up, another long list of side effects, it's difficult to decide which is the lesser of two evils int it!!
~Primarose - it has a FDA Black Box warning for its potential serious side effects.
I have been prx'd 100mg of Flecainide & Cardiologist said he would Prx; lowest dose which is 50mg - going to get a new prx as this drug scares me witless.
A friend in the UK has just been switched to flecanaide - and it seemed an improvement on the previous stuff. Lots of things have a black box warning - it is the USA after all!
I, OTOH, have decided extra pred for increased a/f episodes will do for now! It works a treat...
~Thanks PMRpro - I derive some comfort from knowing your friend in UK on it. What strength is she taking & has she noticed unpleasant side effects?
Also I am relieved in knowing other meds have black box warnings - doesn't take much to scare me knowing how powerful these drugs are & that my life is going to depend on more of them sooner rather than later.
The warnings relate to certain specific cases - including particular forms of arrythmia for which it shouldn't be used. I can't have it for example - my diagnosis is sick sinus syndrome. I'm sorry - I don't know details about my friend, just that it was used.
Without the black box warnings there would be doctors who might try using drugs in a situation where it is already known it poses risks. Sometimes they still use the drugs - but under very close supervision. Flecanaide is often initiated with the patient in hospital - has that not been suggested for you? It might make you happier about trying it. Worth asking. Though the occurrence of problems is VERY rare, associated with particular pre-existing conditions and may be a lot later - you can't stay in hospital forever!
~Somehow your replies are landing in my SPAM box - goodness knows why so sorry for late reply.
Out of curiosity was your sick sinus syndrome inter-related to your PMR journey?
I recall you have been on this journey a very long time.
Without scrolling thru my replies did I mention that my issue is supra ventricular tachycardia + atrial fib which Cardiologist said is connected to my inherited atrial septal defect? Sorry if I am repeating myself here which I think I am.........
The reason I ask you this is that my late Mother did not have any more heart issues once her ASD was repaired that I am aware of which posed my question.
I am therefore slightly suspicious that possibly PMR maybe involved somewhere?
I checked into our local private medical centre last Sunday night hoping to avoid hospital (bulging at seams presently being end of winter). Not to be & was grateful for the help I received & wish they had tried Flecainide whilst being monitored over night. They tried me on low dose quick acting Diltiazem which didn't change anything other than an awful headache - next day slow release Diltiazem 120mg which certainly eventually seemed to control heart racing & slowed the flipped beat of 160 to 140 then drop to normal then up but not as often. Hope you can follow that lot.
I have continued the Diltiazem HCI 120mg CD which certainly has helped but have had L & R hemisphere headache all week + nausea. Cardiologist said I could stop it for the weekend & start Flecainide Monday.............
Should I get into trouble in the night I can take another Diltiazem 120mg - feeling fine presently - sorry this is long winded
Blessings once more
I've looked it up in more detail and you are right it is very scary indeed.
I beat myself up over the Plavix, Lipitor and AA, those side effects were bad enough. I chickened out, if I had to live with some of those side effects I would be a miserable lump!!
~Absolutely Primarose - my steroid is hydrocortisone as pred in NZ not enteric coated & ulcerated my gut. So I pay dearly to have a Pharmaceutical Company make it up (hydrocort) in an acid resistant capsule which leaves gut alone & breaks down in my bowel. Initially all the other stuff (drugs) to counteract the side effects of pred made me as miserable as sin. That was my introduction to treating PMR (eventually) almost 4 years ago ~
I am sorry to hear what you are going through Megams. PMR is enough for anyone to cope with but you have even more devastating problems to deal with.
We take drugs to combat the side effects of drugs to combat.........so to speak, it's never ending. It doesn't always work though eh!
Love your avatar, gorgeous puss pot! We have two rescue cats, one long haired and one nutty as a fruit cake!
~Thank you Primarose for your kind response - its been this wonderful site with the awesome group of folk who have got me thru the worst of the PMR which I wouldn't know if I still have other than having become rather arthritic. I've tried the DSNS method several times but think there still must be some active inflammation because I soon become unwell when reaching a certain level of steroid - holding at 10mg am & 10mg pm (equivalent to abt 4.5mg pred). Will remain at this level for some time yet with my surgery pending + hubbie just finished 6 weeks of daily radiotherapy.
That's Miss Minky, also a rescued street gal - she has brought us tremendous joy & comfort since adopting her 18 months ago. She came into our lives @ exactly the right time.
Lovely to share with another like minded pussy lover - I have 2 disabled red beaked seagulls who come to me daily - one has been coming back for 5 or more years.
Abundant blessings
Hi Megams
You have a lot to cope with; we know own bodies and hopefully you have found the right dose to keep you going for the moment. Sorry to hear about your husband, good vibes being sent to you both.
I hope that Miss Minky is kind to your seagulls! Bless her furry paws. We've had pussy pots for over 30 years now, one lived to the ripe old age of 22years!! I do have a resident Robin who likes to watch me gardening.
Take care now.
~Thank you Primarose once more very kind of you. I have been coping with hubbie's situation very well over past 18 mths - awesome support from his various Specialists. . He continues to heal which is a blessing.
Despite my best efforts, meditate daily & live a quieter life etc, the stress obviously quietly nibbles away at an already stretched adrenal gland to release (if it can) bit more cortisol.....
Despite it all I cope well, just take one day at a time & sometimes just 5 minutes at a time.
Because Miss Minky very small gal she is scared of the seagulls but intrigued at same time.
I just love the birds as spring awakens in this part of the world - birdsong has been simply beautiful 1st thing at dawn & last thing at dusk. Even the odd tui dancing about gathering new nectar & wee insects from my garden.
Just love Robins, how special is that - just beautiful. xx
Hi Megams, I like your philosophy of taking one day at time or even five minutes. It would be ideal to know that your illness will last for a specific time but sadly not in your case.
Dear Miss Minky, if I let our cats out I'm sure they would bring "presents" back, one has FIV so is a home puss but they love to bop the window at the peskie pigeons.
I can sit for ages watching the antics of the bees.
Thanks for the article. It will be difficult to stop over perscribing in the US because docs receive kickbacks. Very sad and making it harder to trust.
npr.org/sections/health-sho...
BigPharma rules the world!
Interesting... Medical training is all around treating symptoms with medication, not looking for causes of those symptoms or other ways of treating them. That is what doctors were taught, and it is a hard thing to break away from.
On top of that I think many doctors find many of us patients quite a threat. And that makes many of them even more dogmatic. A generation and more ago patients bowed to doctor’s knowledge. Now we don’t necessarily, and quite rightly. Many doctors haven’t yet found a middle way of using a combination of the knowledge gleaned from their training and an ability to LISTEN. They may feel vulnerable when their knowledge is challenged. The better ones can listen...and learn...from their patients. And in listening find out what makes each individual tick, and what might be the best route for co-operation in caring for them. This however takes time, and what kind of good communication can be achieved in a 6 or 7 minute appointment?
This has been a major hobby horse of mine through my 46 year nursing career. I could go on for ever !!
Totally agree with you Mary. I think a lot of Doctors feel threatened when a patient has knowledge about their illness. If only they could learn to listen both patient and Doctor would end a consultation happier. Often I leave thinking that I had completely wasted my time and am no nearer a resolution to my problem.
Reminds me of when I had breast surgery, 5 months following GCA and PMR diagnosis. Following surgery 'the headache' started and I knew what is was even though I'd had intravenous top up of steroid - it became worse and worse, nursing staff thought I couldn't get out of bed because of the surgery! When I told them it was my GCA they dismissed it and I just lay there couldn't move. I repeatedly told them I needed more pred but of course they didn't believe me so I said I need to see my Rheumie I'm having a flare and I'm worried about my sight (I'd had visual disturbance prior to diagnosis and was lucky it had returned - another story). I told them he's based in this hospital. Afterwards I overheard staff discussing me saying well she does know her illness and the next thing they came and said he was coming to see me. He gave me an appropriate dose of pred, with instruction what to do next and I was up and went home the next day. Lazarus comes to mind. I've always said it this illness has taken a front seat over my cancer all the way through, which thankfully I seem to be beating. So I say never be afraid to fight your corner, after all we know our bodies better than anyone else.
Western medical practice has long lost an holistic approach. So often treatment predicates on symptom control only with underlying disease cause not only ignored, but frequently not even understood.
In the uk, little time or interest in patient, just targets and box ticking. It's frightening.
Yes a good article without doubt. It reminds me when about 10 years ago and after a blood test, the Doctor at the time suggested that I was pretty near diabetic. He sent me to see the nurse who dealt with diabetic patients. She discussed with me as to what I should be eating and gave me a pamphlet on what type 2 diabetics should eat. However due to the fact I probably new more about nutrition than her, I took no notice of it. Reason being that the majority of the food plate showed quick acting carbs. It subsequently turned out that I was not diabetic after a glucose drink and blood test after the test time. However if I had adopted the recommended diet, I can guarantee that I would end up Full Blown Type 2 diabetic. 
CT-5012• in reply to
Exactly what happened to my OH he came home with a diet sheet, absolutely useless. We cut out most added sugar and empty carbs three weeks later he had lost some weight and his blood sugar was well within normal range, doc amazed wanted to know how he had done this in such a short time. We have relaxed a little but neither of us actually likes sweet things now and his blood sugar is stable.
• in reply toCT-5012
Well that's good. Similar story to me. Cut out sugar wherever I could and now like you, l find a lot of things too sweet. So there is no way I could eat puddings except well made ice cream. There is an Italian ice cream shop in Cambridge and on a hot day there is no way I could walk past the door 🙂
As I've said - a friend is newly diagnosed as Type 2. So while we were staying the rest of us ate a low-lowish carb breakfast on Saturday morning - while she packed away TWO white bread rolls with jam! "My treat..." she claimed. Except most of her other meals had plenty of carbs too - "It's OK, I just take another metformin..."
She just didn't want to hear "The doctor doesn't think I'll get the Hba1c down anyway..." Since he had told her to eat carbs I don't imagine his patients do improve their readings - but apparently he is the diabetes guru in the practice.
You couldn't make it up could you?
• in reply toPMRpro
No you couldn't make it up 🙄 it turned out that the guidance pamphlet I was given was produced by the manufacturers of Metformin. It makes a mockery of medicine in my eyes. I.e make a patient I'll so you can give them a medicine.
Very interesting article, especially: 'Contrary to popular belief, the cost of an ageing population in itself is not a threat to the welfare system – an unhealthy ageing population is'.
First of all I am in no way a medical/scientific person, only insofar as I've spent 3 years monitoring (in very good company on here) what the hell is happening to my poor old PMR body and its cohorts of Type 2, IBS etc..and learning how the small things like diet and exercise can alter (some of) our conditions. Except they are not small things, but major care-taking that our bodies and mood respond to by improving. Within our own powers to achieve, without more pills. * (you will have spotted the glaring exception..)*
It made me think..
Maybe humankind has the ability to be self -healing using our own incredibly elaborate resources, as our planet Earth is/was before we set foot on it. The balance, the all important balance, in both cases is askew through not formerly having the scientific understanding, or wilfully ignoring in the case of our Home, the underlying processes of interactions that keeps everything tickety-boo. We're complex mini-entities containing all we need to support life; unlocking the juicy secrets of our silent little manufacturing bodies is a wonderfully exciting thought as medical science makes great advances in manipulating our own individual genetic make-up to heal us. I can dream.
*aah, PMR, one day, without steroids... *
Terrifyingly true as I can bear witness to. I’ve been on the receiving end of many screw ups and some have been very frightening. I am grateful for all the good medical help and without it I would be in a dreadful state. But this article is tip of iceberg. More money and emphasis needs to go on educating people to be sensible and create their best life. Not behave stupidly and then take a pill. But sadly lots of people choose that.
Very interesting, thanks for posting. It’s inspired me! Maybe not ready for an Ironman challenge yet, thought I would start with the straw man. Going to see if I can get to the fridge and back to my chair without stopping for a rest, Rome wasn’t built in a day I’ll have you know! 🤓
Bio phosphates and Methotrexate come instantly to mind!
~Thank you PMRpro - a great find & an interesting read which did not come as any surprise.
Especially for me today seeing my Cardiologist who tells me "I will be a work in progress" as he finds a suitable drug (that won't continue with added life limiting side effects) to treat my super ventricular tachycardia + atrial fibrillation, an aftermath from my atrial septal defect repaired 1988 but electrical circuitry remained faulty - I just learned to live with it as it was weekly occurrence + I knew no normal heart beat anyway.
Its slowly increased since PMR 2014/2015 & it appears I have no alternative but to swallow a hefty toxic drug. Ablation is risky & not certain to work either.
So I just hope I survive in the process (mentally) as my body just does not seem to take these set backs like it once did despite my regular daily exercise/proper diet, decent sleep etc.
And I'm rescheduled for peroneus tendon surgery 11 Sept so it's sink or swim time.
Cheers & blessings once more
WHAT AN EYE-OPENING ARTICLE!
Very interesting, thank you. Change is slow in the medical profession, but there are signs of hope, the GMC has now authorised GPs to prescribe the Blood Sugar Diet for newly disgnosed T2 diabetics. I refused to take Lansoprazole/Omneprazole (SP?) or similar with Preds as was wary of side effects, I am just careful and always take them with food. I don't believe everybody should be on statins either, odd coincidence that they're a very profitable drug for Big Pharma.
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