PMRGCAuk
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Nutrition and medications

I have slowly been learning the effects of prednisone on the body and its nutritional status. How many of us were told at the beginning of the PMR/pred journey to take calcium supplements? How many of us were also told not to take calcium at the same time as pred, only discovering this later? How many of us were told that extra calcium can cause an imbalance with magnesium so we need to make sure we get more magnesium, hopefully through diet, but maybe supplements will be needed? How many of us know that pred also depletes other important nutrients, like potassium? How many of us know that nutritional imbalances and/or deficiencies can even cause the same kinds of issues, like pain, that we are being treated for, or other problems which, because nutrition isn't considered by the doctors, can complicate our medical picture?

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Hi Heron,

Was prescribed Calcium/ Vit D alongside Pred, but not of timings. Just twice a day! Learnt about that and all the other things from this forum! Thank goodness!

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Very good points. In spite of having Graves Disease since the 80’s I never knew to take it on an empty stomach, well away from other meds. I learned that from Poopadoop on here. Most of the points you make I have found out on this forum too.

I take chewable Adcal but it seems to irritate my bladder. Not quite sure where to go from here.

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You could try a different product - the stuff I used to use did the same though initially only on days when I didn't drink as much as usual (when travelling for example). We switched to something else and it seems better. A calcium citrate product would be less likely to cause the bladder grit problem.

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Thank you so much PMRPro. It has become hard to ignore now. I drink a lot of tea, I guess that’s not as good as water?

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It's what I drink most of - water is water is water whether it has tea flavour or not. Alcohol is a different matter though!

I know what you mean - feeling as if you have a permanent UTI is no fun!

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Herbal tea is. I think it’s the caffeine in tea and coffee that has the experts agin it, but most seem to agree that de-caffeinated teas/infusions are okay. Well today anyway, it could all change tomorrow!

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The diuretic effect - but all that does is make you pee it out quicker. You will get rid of the amount of excess fluid whatever it is, you won't become dehydrated as long as you have drunk enough water in some guise.

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Oh that life was simple sometimes!!

Much too complicated for us simple country folks!

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Actually that is a good idea. I bet there is one that helps the bladder. Thanks... sigh my beloved cup of Yorkshire tea was one of the few joys I had left. ☹️

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Dear SheffieldJane - the decaffinated version of Yorkshire tea is very nice x

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I don't think it's the caffeine content which is an issue here.

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Depends on what you mean - caffeine DOES have a mild diuretic effect

"As a stimulant, caffeine increases the activity of the cardiovascular system, thereby increasing heart rate and blood pressure. As a result, the renal system encounters a higher volume of blood to filter, resulting in a higher waste output. Accordingly, this property of caffeine causes more frequent urination."

but it doesn't have a dehydrating effect.

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Actually sounds like caffeine would be a good thing in this context? Keeping the bladder flushed out....

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Don't think it matters - even water has a diuretic effect when you drink plenty.

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Can I ask if you are a professional or have you just a lot of knowledge due to the fact you have suffered so long. Your help is greatly appreciated

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I have a physiology degree and also studied biochemistry as part of my job. I worked in the NHS labs for some years as well as with my husband in his vascular research field. For over 30 years I translated medical and scientific texts which required large amounts of background knowledge. And for the last 9+ years my specialist subject has been PMR/GCA! I have heard the stories of hundreds of PMR/GCA patients on the forums over the last 9 years - and have a memory like the proverbial elephant!

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keep up the good work

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And we have all benefited from your vast knowledge! Thank you again PMRpro!

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👍

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I will try it. We tend to have Rooibos (sp) in the evening.

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guysandstthomas.nhs.uk/reso...

Last 2 pages probably of most interest.

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Thank you for posting this link.

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Hi SJ. When I had graves I was told to come off anything caffeinated (among other things). So I discovered de-caf tea and the very best one is Yorkshire tea (tried many) (Taylor's of Harrogate). I love it. I also use calcium citrate with no bladder problems. Only problem is you have to pay for it as not available on NHS (as far as I know). All the best cc 🤗

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Some herbal teas with citrus and spices can irritate the bladder. And green tea is not good with some statins. All these bits and pieces of info. So hard to stay on top of them all.

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Surely is! Especially when you get conflicting info.

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I am sure calcium citrate is preferred over calcium carbonate. Unfortunately the carbonate is very cheap so probably used in any supplement covered by your NHS? You need to take calcium with a meal, especially calcium carbonate. I never have calcium supplements without food or at least a small snack because they give me stomach ache. Lately, because of comments on the forums, I've been taking my bedtime dose with a little plain yoghurt as well as milk or a small snack. I suggest that having something acidic, like citrus fruit or juice, with calcium carbonate could help, although this is just a thought, I don't know the evidence. And I think it was Dorset Lady who suggested that yoghurt helps. There has been some research showing that calcium is more easily absorbed from yoghurt than from other dairy sources. I expect the gut flora are benefiting and therefore working more efficiently.

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Just lately I have been feeling unwell with the cystitis symptoms. I read that a high concentration of calcium in the urine provides an environment conducive to the bacteria that causes infection. I also read that live Yoghurt can drive it out. I ‘ll ask the GP if I can try Calcium Citrate. I think I have set up a sensitivity that responds badly to anything acidic like lemon juice .

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If you have cystitis symptoms AND feel unwell then there is a high chance you DO have an infection. Have you had a urine culture done? Although they don't always show it - and the dip sticks the GPs use have been shown to be very unreliable.

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Yes I had the dipstick one months ago. Nothing showed and the GP looked braced for a fight about antibiotics. So I left it. Still got the symptoms now. I thought it might be a Pred side effect then.

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Well I’ve Been taken off Adcal. The same doctor who pressurised me about Alendronic Acid said that I got enough from my diet. He put me on Desunin vit D 800u and for the UTI Nitrofurantoin. He’s never prescribed Calcium Citrate apparently. Seems to have forgotten the extra stress Pred puts on the bones now. Seems fixated on urinary problems in Post menopausal women being a chronic thing.

The first day of these meds has felt pretty rough.the side effects read horrendously.

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Oh dear. They do have one track minds. Hope abx kick in soon. You have had probs a long while if I remember rightly.

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You do remember rightly 😘, but this felt like an illness not just a nuisance.

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Yes the dipstick tests are unreliable. I was told to ask for a culture, but the GP lab doesn’t always do it. Especially if you are “elderly”, ahem, I’m 75, you don’t always have the pain, burning, symptoms. Happened to me.

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The so called elderly require immediate treatment for uti.i am always hearing of friends friends admitted to hospital and it's an untreated UTI. Very scary.

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Hi

For repeated cystitis like symptoms, I self medicate with D -Mannose. Research on line. I use supplier Sweet Cures. I have met and talked to discoverer who runs company. I had suffered two years of repeated infections and antibiotics and after starting Mannose have been able to nip symptoms in the bud for 4 years! PMRdiagnosed 3 years ago and frequency of symptoms increased but I was still able to control with Mannose.

I was an analytical chemist in working life. The mannose acts like a catalyst. This is a "sofa" on which the little bugs like to sit in the bladder, they can then be flushed out rather than clinging to bladder walls.

I carry Mannose supplies all the time as fast action is best.

Hope this helps. Valerie

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What is the dose you take?

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My supply of Mannose is 1000mg tablets. I take one tablet when I feel a "niggle" if it does not go away by next toilet visit I take another. Then flush with loads of water, even tho if you are bloated you do not feel like drinking. Then I wait 4 hours or so to see if it has settled. If not, I take another. If I feel better I take 1 per day for next couple of days. Notes on line say it is safe to take one per day maintenance dose all the time. I have found this not necessary.

Mannose is a sugar related to sucrose chemically so maybe diabetics should be more cautious and talk to doctor or diabetic nurse.

Valerie

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Thanks, Valerie!

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I have sent for some. These antibiotics are horrible.

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I must try this, thanks!

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My cousin had interstitial cystitis and it took years to find a specialist to really really treat it. No infections, but lot of irritation and discomfort.

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I was told to take a bunch of things. I said no. Agreed on new bone scan (which I’ve avoided so far). Im happy with magnesium & cheese & kale. Americans overdo the calcium and have way higher rates of osteoporosis.

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I think that's because many people are lacking in the other micronutrients essential for proper calcium metabolism.

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The difference is in the pred - which makes us lose more calcium through the kidneys. Taking calcium supplements helps make up for that.

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Could that be why my wee has been cloudy since pred? There is no infection so the doctors have lost interest

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Not sure to be honest.

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Thanks. Can't say it worries me especially, it's just not 'normal'.

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My R wanted me to take one of those cancer drugs.

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Don't be misled. Yes, they were originally developed for use in cancer - and I assume you are thinking of methotrexate? However, in cancer they are used in high doses, in rheumatoid disease they are used in very low doses and it is a totally different kettle of fish. Methotrexate has been the most widely used drug all over the world in RA for years - and plays a role elsewhere too.

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Most of us agitate for a bone scan to lend weight to our arguments against Alendronic Acid and its like.

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I do so agree, they are not interested in the medicinal properties of food. They were all indoctrinated by Big Pharma at an early age. When I mentioned the advantages of a low carb diet I got blank stares. Such a shame.

We are all very grateful to the charity and this forum, think where we would be without them!

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Given the discussion in the last couple of year about being able to reverse Type 2 diabetes by diet and the possibility of managing it with low carb diet you'd hope the average GP might have their brains in gear.

Hope springs eternal...

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I am definitely living in hope that I will have the wherewithal to reverse it for me. The first 10years of diabetes I was given bad guidance or no guidance regarding diet but managed it with Metformin and diet. I can see a big difference with low carb higher fat diet in my hba1c. I suspect if I had been given current advice on diet I may not have experienced a cascade of 3 more immune system issues. It has felt like I am climbing out if a well and Everytime I get my fingertips over the top edge someone stamps on my fingers.

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It is disappointing how long it has taken for the general medical community to catch up on the idea that an improved diet with a lot less carbohydrate is going to be better for the patient than all the carbs plus medication. But the patients rather like it I suspect - it is easier to take a few metformin than to transform your eating habits - even if they were the reason you need the metformin. I have never understood the concept of feeding yourself the food group that causes the trouble and then sorting the problem with chemicals.

People with coeliac disease have to manage it with strict diet - diabetes should be the same. But they worked out how to make insulin - and the need for a strict diet disappeared.

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I lurk on several diabetes forums and members often report that drs and diabetes nurses still pushing high carb diet.

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So I gather - and I hear them say "carbs are essential"! No they aren't. The human body is very good at adapting to a lack of carbohydrate and then utilises the fat stores to produce energy. And apparently the brain prefers that source!

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I went on low GI diet until life, work and 5 years of reduced mobility and stress struck. Combining GI and further low carb is gradually turning my weight gain to weight loss. There's a programme by kress called diabetes miracle that is intended to reverse diabetes. It's a bit self help you but I think I am almost at a head space where I can at least attempt it.

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Newcastle and Glasgow Unis combined to do a study using diet to reverse onset of Type 2 diabetes. Strict 600 cals for 8 weeks - some details here, including stuff to give one's doctor:

ncl.ac.uk/magres/research/d...

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Hi Poopadoop, a friend visited yesterday who is pre diabetic and she had been sent on a six week pre-diabetic course. I had never heard of them. That was a couple of hours a week not the whole week!! She was given tomes of manuals and they seemed to talk absolute rubbish about nutrition, not that my friend seemed to have taken much in though.

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I hope your friend goes to diabetes UK website. There a low carb programme with loads of recipes. It's good if you eat meat but been a bit less useful for me as a veggie.

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I am not sure she cares that much. I have another friend who has full blown diabetes and sits around eating biscuits.

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Oh dear. I am no angel so I just try not to buy. There is a lot of diabetes burnout when people just try and live a life without restriction- got the t shirt. Usually after a tantrum I get back on the boat. Whether it's real or imaginary my toes start to hurt and go red if I have biscuits or other high sugar "treat". It's not really a treat if it's slowly killing you!🤔

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Diabetes UK is an excellent resource.

I reversed Type 2 Diabetes with a low carb diet and regular gentle walking. It only took a few months as I recall.

I refused Metformin and read a book called “Reverse Your Diabetes” by David Cavan and simply did what he said - and it worked a treat!

Low carb is definitely the key. At the time the NHS were saying low fat was the answer, and to eat plenty of carbs. Absolute rubbish!

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A friend of mine has been dx'd with Type 2 diabetes. The GP practice "guru" has told her that it is all about calories, not carbs! So she pops her metformin and sits down to her treat Sat am breakfast: 2 rolls with jam etc. Sunday lunch was lamb, new potatoes, an enormous Yorkshire pud, parsnips, carrots, peas and broccoli on a plate so full it would have more than fed both David and me.

Are there veggies with more carb than parsnips? I could only feel that she hasn't really accepted she is diabetic - the GP has told her that he doesn't expect her Hba1c to come down from the mid-60s any time soon. On a diet like that - neither do I!

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I think my friend is a bit like that too. Having become a nutrition nerd with steroids I think I would start to take note if I were pre diabetic. I must admit when my HbA1c comes out as normal I go home and celebrate on chocolate and wine! The same with my liver results when they are normal I go home and celebrate with a drink!

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If she could at least make a small change on her vegetable carbs eating none that are grown below the ground only those above, anything would probably help.

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I know. She doesn't want to know - the ill-informed doctor told her what she wanted to hear: she could carry on eating her really appalling diet which got her into the situation in the first place.

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I was told not to have jam on my toast....but eat lots of pasta, wholemeal bread and rice and to cut fat.

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Which really does make you wonder just what they know about nutrition!

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😂😂😂 indeed.

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If I had a chef on hand it wouldn't be an issue. I love my veg etc. I try to be organised but much of the time during the last few years even chopping veg a chore. Summers here now so lots of salad...yum. that wasn't sarcastic. 😂😂

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I love salad - and we have a superb selection of everything in our Spar supermarket, all loose so you get what you need. It is asparagus season still - must have had it 4 times a week while here! So easy to do. But this morning I resisted the temptation - tinges of regret now though...

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Asparagus is lovely and I love the white (when I can get it). It's always expensive but i try and buy seasonally as everything tastes better when in season. Now I will have to buy some tomorrow. Lol.

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It is mainly white we get here although green seems "in" this year - in Germany it is only white and I do prefer it too. You almost only get it seasonally here - and nothing would induce me to buy the Peruvian stuff which does make an appearance occasionally. Last week I got 500g for just over 3 euros - no idea why it is so reasonable this year unless it is because they have the peak production now and missed Easter which is when they usually sell tons.

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We have a pick your own asparagus near here. I noticed they had asparagus beetle. When I mentioned it they said it is all right they are full of asparagus!

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Even trying to change your eating habits is hard When you don't have any energy. When it comes down to it I don't know much about nutrition. Planning, shopping, reading recipes, chopping, slicing, figuring it out, all I bit overwhelming when you don't have much stamina.......

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Agreed totally regarding planning etc.

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Did you know that cooking your pasta and allowing it to cool before eating (you can reheat it of course) does something to the starch which makes it harder for the body to absorb and helps avoid sugar spikes. Same goes for potato, too.

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I think it is much better to keep the skins on potatoes too I read somewhere.

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I think that's because the Vitamin C is in the skin

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Yes. I decided to cut them out..anything that leaves starchy water is usually higher in carbs. I substituted pasta with edemame "pasta". New potatoes also release carb more slowly. The more fibre and fat the slower carbs are processed/absorbed. It is possible with glycemic loading whilst lowering carbs to reduce spikes too. You have a mix of high fibre carbs with a low GI with pasta and it stops those post meal spikes.

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It's definitely worth doing for 50% reduction. Thanks. I seem to have a memory of watching the programme. Do they recommend something for memory ....sticking and accessing 😂😂😂

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We get it once a week on my side of the Pond, I don't seem to be able to watch it on line even though I subscribe to the channel which carries it (BBC Earth). They are all old episodes. But you can search for the episode you are interested and if you're in the UK should be able to view it.

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He has recently done some new programmes (Mosely) but I can't remember what they were about🤢.

Even in the UK they take programmes off the iPlayer after a certain time. I went looking for a seriesy sister recommended from the end of last year but it had already been dumped. They will bring it back if they do a second series. I am on Netflix most of the time and have recorded "live" TV. Don't know when I will watch recordings!

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We are blocked from viewing shows in other countries. Can't get US shows either, unless a Canadian channel is carrying them and puts them on their own website for a time.

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Try youtube. I have watch whole programmes on it and usually follow cycling on it.

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Good idea but I probably don't care enough, except in the case of missing a key episode in a continuing drama, and even then they are usually rerun several times. Now find me a way to watch new episodes of Ancient Aliens without having to buy access from the cable company for too much money and I'll be all over it!

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Wow! Thanks!!!

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(Link on cold Pasta study

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Yep. Dr Michael Moseley (UK) has made a TV programme about this. It's better to eat pasta al-dente because it has less effect on blood sugar spikes. These Italians know what they're talking about!!

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Used to you mean - southern Italian children are now fatter than anywhere else. You only have to walk around a supermarket down there to see why!

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My type 2 diabetes is now in remission after following a LCHF diet and I feel a lot better for it and the weight I have lost

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How long would you say following the low carb diet it took you to see a change in your levels either blood sugar, cholesterol and triglycerides? I have been following the ketogenic diet of high-fat low-carb and medium protein on the basis of research stating that it can reverse these levels, for about 6 weeks. I have also lost 11 pounds. Since I have a family history of cardiovascular and stroke at early ages this is particularly important. Best of luck to you as you continue to reverse your diabetes.

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I was having blood test every 3 months for hba1c and it had dropped from 114 to about 90 in 12 weeks then by 6months 54 and has rested thereof thereabouts.

I am afraid the cholesterol is a bit resistant to dietary change. The pred will raise that and statins are not the wonder drug they presented them as. Women don't benefit from them if there is no preexisting heart episode and even if after one not as effective as they thought. The odds for men are better.

Well done on sticking to low carb. Try to ensure you are not overly strict with yourself. You are trying to find a way of life you can stick with. Even an inch of the waist can lower blood glucose🌻

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thanks I'll try to remember that but it's going pretty well. that's impressive that you got your sugar level in half in 6 months. That gives me hope. :-)

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Do you have diabetes?

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No

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Oops. Forgot to say I was out on insulin when put on pred as diabetes for 18years was suddenly uncontrollable. Sorry about that...

BUT I lost weight pre PMR/pred and got back from 80s to 45 over 7months. I reduced to diet and occasional Metformin to control high spots. Then hypothyroidism stuck and it took me months of frustration at why weight went up despite not changing diet. But I do know that dietary changes work very effectively if you can stick to them. Good luck to you. You are doing really well so far!!!

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Thanks for the encouragement, Poopadoop. I can't remember if I mentioned that I do not have a thyroid thus am 100% supplementation Reliant which does not work well at all with the Prednisone.

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Yes I remember now it on another thread a month or two ago after a trip. I am on levothyroxine and it is difficult even with the artificial help to get round it. We can only keep going!

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The Newcastle 600 calorie approach is to be used for 8 weeks. It should take about 4 months to see a significant change in Hba1c using a fairly standard low carb diet - Hba1c reflects the average BS levels over the previous 3 months.

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Agree, if I had followed my heath Centre/Doctors advise on what to eat, I would probably be grossly over weight and even type 2 diabetic by now.

I now (within the last 4 years) research, research, research, since I was put on PPI's about 20 years ago. Despite having home cooked food with plenty of variety, no salt added and reduced sugar as advised by UK Doctors I ended up with Osteoporosis (DEXA scan at start of PMR) Just to add, I was always very active and far from a couch potato. Fitting kitchens and bathrooms which meant lifting heavy items.

No Doctor advised me that need acid in our stomach to get proper nutrition. I now obviously take calcium/Vit.D but also a variety of other supplements including salt try and counter the effects of the PPI's, Pred, blood pressure tablets and amitriptyline.

I've tried getting off PPI's many times using different techniques, but in the end I have to go back on them.

It's all very complicated, but we all need to look after ourselves and double check what some doctors advise and why!

Down to 3mg pred now, so 'steady as she goes' :-)

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I was on ppi's for at least 16 or 17yrs. Mainly because the craze when I was DX with diabetes was to stick a baby aspirin in the mix so ppi to protect tummy. I was wobbling about taking it for 3 years because of potential osteoporosis and kept trying to stop but got heartburn etc.

Then Dr took me off the aspirin as no longer seen as preventing anything CVD etc for diabetes.at the start of PMR. I had to taper ppi for over 6minths. 1 on 1 off for a week 1 on 2 off etc etc. Lots of back and fro'ing. I don't take them now unless I have realllllllllly bad indigestion. I usual take zantac or gaviscon toanahe small bouts. I presume they have tested you for HPyori?

ulcer-cure.com/index.php/h-...

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Oh and my bed head is 6 inches higher than the foot. Books I will never read again.

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Yes had all the test and conclusion was GORD reflux.

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The efficacy of supplements (often a hot button topic for me) was discussion today in a red top in the UK.

mirror.co.uk/lifestyle/heal...

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I completely agree that we make too much of supplements. In the case of taking a medication which depletes nutrients which we normally would get enough of from our diet I think we need to pay attention. We also need to be aware that many of our foods are now being grown in soil which is depleted of some nutrients so our trusty bunch of kale or broccoli may not always be the greatest calcium bank as we thought. Articles like this make the assumption that the person taking the supplement is healthy, and that the food supply is healthy, both of which may be in question, the food supply depending very much on where it is produced. Many of us probably are fine with getting our nutritional needs met completely through diet, but some of us are at risk. And the trouble with foods is we don't know. I have no way of knowing, for example, if either organic or standard broccoli from California is any better than local broccoli. I suspect not. But I can't get local broccoli for half the year. I do think that a free range hen's egg is probably better than that produced by an artificially fed battery hen. But maybe not?

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I suspect that animals that are free of antibiotics and hormones and kept free range are less harmful (I don't eat meat). Similarly plant based nutrition is required to fulfil criteria to be called organic but not sure how they measure that effectively. Usually it's about not using chemicals for preceding period of time. Obviously water/rain and dust/dirt travels around the world over time so like you say there is no guarantee that I have found that the nutrients are up to speck.

One of my favourite additions to my diet has been alfalfa sprouts. The plants are supposed to be deep rooted so draw nutrients from deeper (might be crap and I don't know how much of this would reach to seeds to be sprouted). Watercress supposed to be good as flourished in water that has filtered through limestone and us therefore supposed to be calcium rich. I don't have italics or underlined to emphasise that I think evidence for these assumptions is 100%!

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I don't eat meat either, but I do eat dairy, especially cheese and yoghurt, and eggs.

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Cheese and yoghurt are again part of my diet. I do eat eggs but have to ignore it. Especially as they now say better for preventing CVD. It will obviously all be turned around again soon.

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I started eating more eggs when I stopped eating cereal for breakfast. Have two eggs instead. Fried and with salt and pepper. Probably bad for me, but not giving them up now! I otherwise lead a rather abstemious existence and have not been able to regain lost weight. Last few days have been trying to remember to eat more fruit so I get more potassium in my system. My blood pressure was starting to get a bit high last time doctor checked a few months ago and I don't think my increased salt intake in the absence of more potassium is an unalloyed good thing, even though I am now through several weeks of no morning headaches!

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I am glad your headaches improved. I have daily headaches for about 2 1/2 weeks. It seems my eyes needed testing as with new glasses they have all but disappeared.

Have you tried the pink Himalayan salt? I haven't reduced salt by much but don't get as bloated and BP has decreased from 153/90plus to 135/75ish for past couple of months. I like my eggs scrambled but not averse to fried eggs. I always want fried eggs in a sandwich though so don't tempt myself. A few fried mushrooms go nicely as a base of the scrabbled eggs. And always white pepper for me.

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I like mushrooms too, but our only significant Nova Scotia mushroom grower was bought by another company then promptly shut down and all the equipment removed, and I still miss those really fresh mushrooms we can't get any more. Spoiled I guess.

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Oh no. Hate things like that.

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We couldn't believe it. And the former owner was under an agreement not to say anything about the terms of the sale which seems strange to me. A little surprised, actually, that no one has yet stepped up to fill the breach. Guess they are all too busy oversupplying the craft beer, cider and mead market, not to mention local wine. No question, if this wasn't the original Viking Vinland it certainly is now!

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I can remember if input these recipes up before. But some look tasty and if anything has avocado I am in.

popsugar.co.uk/fitness/phot...

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Any info on K2 supplements(dose, effectiveness and side effects)? I have read K improves bone utilization of Calcium supplements and helps prevent deposits of Ca in soft tissue and arteries.

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If your diet doesn't include grassfed animals and their products (never grain fed) or natto you are probably deficient in Vitamin K2.

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Are you taking K2 supp? Dose?

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Just follow dose suggestion on bottle, unless you feel you need more. I find my teeth are less sensitive when I've been taking 200 mcg per day for a while, although the dose is supposed to be 100 according to the supplement bottle. I think K2 is one of those things you are not likely to overdose on, unlike Vitamin A supplements for example. It also depends whether you are taking K2-07 or K2-4, the suggested dose varies enormously. My supplement is K2-7, derived from natto (fermented soy).

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Ok. K2 it is.

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Excellent reference. I recently discussed K2 supp with the pharmicist. He cited concerns regarding activation of coagulation while also taking Prednisone and Actemra. All so confusing. Do not want additional problems. Rheumy or GP will not know. Mild osteopenia on dexa after 2 years steroids PMR. Do not want to take Fosamax. Hope to continue successful taper from current 18mg with the Actemra(GCA Oct 17) Walk 1 1/2 - 2 miles daily, at least quart of milk intake a day, Caltrate and vit D supp.

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K2 has nothing to do with coagulation. I have mild osteopenia - -1.5 is my worst reading after 7 years on pred. I refuse to take a bisphosphonate - so far have only had one doctor who got iffy about it but I was seeing her for something else and only once.

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My understanding also but he put doubts in my mind. I usually rely on the pharmacist advice. Thank you for your f/u.

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K2 Mk7 is the best one for assisting calcium to the right places, I.e. the bones! I started taking it, not at same time of day as Calcium and Vit D, before I started eating grass-fed organic meat and offal, which are the best natural sources of K2 as well as being just about the most nutritious foods you can eat, especially liver. It’s like rocket fuel! 🚀

I’m on Warfarin and K2 definitely affected my INR, but consistently, so I simply upped my Warfarin dose by 0.5mg which soon settled it.

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Thanks for that but do you have to take the K2 at the same time, or is it that as long as the K2 is taken some time the same day, there would be enough swilling around the body to do the job????

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I presume taking it at some point is enough.

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Probably, so I think the same as you.

I have read several studies like this even a book on the subject, but I don't remember seeing it actually stating when to take it. I think however that for Dumbo's like me they should make it clear.

As a trainee flexwing pilot, before I was stricken with PMR, I was always told that if I wanted to descend in a safe manner, I should change the wing attitude before reducing throttle. In other words it changed the outcome of the result. Different 'technology' I know but it would be useful if the boffins would to spell it out :-)

Change of subject, hope all turns out well in Italy! and of course I hope you are as well as expected on your PMR journey. Funny how MB just stopped at 4mg/ without dramatic shortcomings.

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I suspect the boffins don't actually know. ;-)

Apparently they are talking again - 5S are offering to propose a different finance minister. Matarella mightn't have been a green as they thought he was cabbage-looking...

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:-)

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Nice Matt cartoon today, two ladies cooking pasta one saying to the other ‘if you want the pasta al dente you should only cook it for as long as an Italian government lasts’!

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These days it wouldn't even be softened...

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Wasn't it 2 mg?

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2, 4, 3 who knows?

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Just found his post - he'd been as low as 2, but, quite right, Pastit, he was at 4 when taking the plunge!

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Yes yes yes. Vitamin K2 is lacking in many foods these days. There is an excellent book "Vitamin K2 and The Calcium Paradox" available to download really cheaply. After 35 years in healthcare practice I had never heard it, but am now a convert. Have you ever noticed how bad children's teeth are these days? Not just decay but their teeth are irregular, over-crowded etc. The book gives a plausible explanation. Fascinating.

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A very good book IMHO it's that book that convinced me to include K2 -7 at the time I started calcium/vit D nearly 4 years ago ☺️

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I remember this discussion coming up last year & lots of people had never heard of taking the Calcium away from the Pred, I’d always had a Reminder in my phone from the beginning to take it in an afternoon & early evening.

I remember the discussion became contentious at the time but l just continued but did double check with my Pharmacist & even he had to look it up to be sure. Obviously my Rheumatologist gave me this information & I’ve stuck with it.

If I ever have anything new l always ask the Pharmacist to check out interactions for me first. It’s worth doing anytime & your Pharmacist will be happy to check you are taking your Meds correctly & this getting the best benefit from them.

Mrs N 💅🏼

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I had read the info sheets which came with pred, and quite definitely it reiterated what I'd been told, must be taken with food. Later, when the calcium issue came up, I went back and looked at the sheets again in case I'd missed that directive, and there was nothing.

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It’s weird isn’t it? I’d always had this bit of info & had a reminder in my phone, still do in fact.

A couple of weeks ago we had a Locum Pharmacist, who asked me if I’d been taking Pred long & wanted to discuss the issues with me, if it wasn’t? I was kind of impressed!

Hope you’re doing OK?

Mrs N x

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Thanks I'm doing well. And you?

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A bit mixed really seeing an Endocrinologist at the moment & having some blood tests etc

PMR is under control at 7.5/7mg aiming to get back to 5mg but the fatigue at 5mg is not good, but trying it the Endo’s way so he can rule anything else out.

Waiting to move house on 8th June but not into the house we’re buying as the top of the chain won’t sign! We’re going to rent a house as we want to be in Telford for the birth of our first Grandchild, so exciting times ahead!

Keep Well

Mrs N x

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I was told absolutely nothing not even to take my pred and levothyroxine at different times. 😨

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A friend had taken thyroxine with another medication for years then had a cup of coffee. Used to have terrible mornings. Since I told her that thyroxine can be taken at night she has felt much better. I tried thyroxine at night but just didn't suit. So when I wake it's thyroxine... immediately. Then pred and mycophenolate@1hours later. Then 30 mins later I check blood and inject insulin...eat 30mins later and take my pain killers. Of cause the painkiller are the ones that get my not PMR aches and pains moving. So if I wait til 6am to take first lot it's often 9am before I have taken meds and a furter40 to 60 mins tfor them to kick in .so b10 or 11am I am just getting my head on straight.

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It’s no fun is it but somehow we make it work because we have to!

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My head would be totally missing without them 😂

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So yesterday I say "did I take my calcium family"? And hub replies "I'm so used to you popping pills I couldn't say"! It is thanks to this forum that I take the right pill at the right time, don't take glucosamine on day I take AA, have made a multitude of dietary changes as outlined above and I thank God - we are on our own but with this vital lifeline.

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For a second I thought hub was one of those fancy talking computer things like Echo. Then I worked through what the answer a machine could give and I realised they wouldn't know if you had...unless EVERYTHING was connected...pill boxes etc etc. Phew exhausted after that. 😜

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Ha ha! I know what you mean. (A little piece of me died inside when a friend was compelled to demonstrate Alexa's ability to sing Happy birthday last week. Funny old world.)

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HA! No. No. No. No. No... and NO! I wasn't told any of that!!!!! Take calcium.. that was it!

Piss poor communication if you ask me!!!!!

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I was prescribed calcium (Adcal) at the same time as the pred but no instructions on how to take it. I only learnt not to take it at the same time from this forum.

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Hello HeronNS. Just to reiterate, I live in France and when I was diagnosed with PMR and GCA part of the treatment here was me being given a tailored diet (a long consultation + detailed booklet which also included menus). Yes, it was VERY hard to stick to i.e. no snacking etc. No sugar, no salt. But I gave it my best shot. Haven't put on weight. No aches or pains (apart from early on had a couple of flares). I'm into my second year with Pred now tapering extremely slowly from 8 to 7mg. I know , thanks to this forum, I am looking for a good maintenance dose but anyway HOPE to get down as low as possible or even down to zero.

Being careful about what you eat also gives a much-needed sense of control. Change of eating habits (permanently) can be enlightening.

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The wheels of change are cranking upamongst the GP community - have a read of the following concerning last weeks conference at the RCGP in London.....

foodmed.net/2018/05/lchf-sl...

foodmed.net/2018/05/phc-lay...

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Malhotra, Harcome and Noakes - brilliant triumvirate!!

"Despite current conventional dietary “wisdom”, Broom said that low-fat, high-carb diets are also “inappropriate” for diabetics. Diabetes is a condition in which patients have difficulty metabolising carbohydrates. Therefore, it makes no sense to give them a high-carb diet, he said.

Experts also often say that once people become diabetic, it is harder for them to lose weight.

“That’s true,” Broom said, “but only if you keep giving them a high-carb diet.""

Well quite...

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Very informative links, full of inspiring doctors whose words have given me a boost along the LCHF path.

The Aldous Huxley quote from cardiologist Dr. Scott Murray made me laugh, and then grimace: 'Medical science is making such remarkable progress that soon none of us will be well'. The difficulty arises in the time lag between these forward-thinking, evidence-based ideas being absorbed and acted on by our overworked, time poor GPs.

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Decaffeverything, no alcohol, no chocolate, no sugar. I am lucky because I follow these rules without difficulty. Not t total but can go without. Sugar is another no no. Dairy food is the one I find the hardest. But all this seems to work and if it means no symptoms I will keep to it

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Ps. The doctors do not mention diet or nutrition at all.

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They don't mention it because it's not part of the syllabus!!

Same for Vets. They get a half day lecture from a representative from a pet food company. That's why they get locked into a particular brand to recommend! They believe the marketing hype. Oh the stories I could tell.......................

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I worked as a translator for a company that did market research during clinical trials. Some of the questions they asked were about prescribing habits - and how that related to the most recent rep visit. It was obvious that that influenced "what the pen wrote" - but the doctors always deny it...

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I read up for myself an decided to supplement the difference if I don’t get enough calcium, my doctor agreed that was a good choice. Mostly they ask what I take, and agree with me. It’s not only calcium I think, it’s weight bearing exercise also and correct vit d amounts and overall nutrition. I gave up trying to find a good naturopath to help me make choices, too many ripped me off.

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I too was never told about supplements needed. But through my own research I have decided to do an anti-inflammatory diet and try some supplements such as omega 3 oil, vitamins with calcium and magnesium.

I have dropped 12 pounds since I started this diet 2 months after taking prednisone. Started at 15mg now at 9mg.

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Please read the the information given on the pred box itself the label states take with or just after food,Warning read the additional information given with this medicine

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Agreed, but I don't get the box. We are given our medications in a container supplied and labelled by the pharmacy. The only added instruction stickered on was to take with food. There was no instruction even to consult about possible interactions with other meds (which I don't take but many do) or supplements, like the calcium we are all told to take when on pred.

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Hi,obviously I cannot speak for anyone else ,when first diagnosed I was given Calclchew by my GP and I followed the patient information leaflet.

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I was not given any of this advice when diagnosed and prescribed prednisone. I learned most of it from this forum. I had to request from the doctor to have a DEXA scan and an eye exam to get a base line for glaucoma. None of the doctors recommended a low glycemic diet, nor warned me that I could experience steroid-induced diabetes. I went out and got a blood glucose meter to see what pred is actually doing to my blood sugars even though I am not diabetic. I was surprised at how much I had to reduce carbs to keep blood glucose at safe levels.

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Hi Heron, good post and what a thread it turned into!! I've learned yet more stuff!! :-) I was put on the Adcal at the very beginning but was never told when to take it! I was also never told about the magnesium supplements or the potassium! These are just some of the reasons that I am so grateful for this forum!! I learnt from here to separate the pred and Adcal, I've been taking magnesium supplements for about a year now.....they have certainly helped with my 'jumpy' legs!!! Now i must eat more bananas!!!! One thing I did learn from the Adcal sheet was to leave about 4 hours between levothyroxine and the calcium supplement!! I've done an awful lot of reading since I developed this condition!! :-)

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The energy we have towards getting well as naturally as possible is astonishing. Thank you for setting this thread off Heron and all your helpful insights and information and the contributions from others along the way!

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Hartmare, I totally agree. Got myself an anti-inflammatory cook-book, did a ton of reading up on nutrition (there's a lot out there) as well as following my French specialist's low-carb diet. Which means: changing cooking habits (fresh food as opposed to super market packets) and keeping exercise up and stress down. Am 74 and, after the initial shock of being diagnosed with PMR and GCA just over a year ago, am feeling positive partly due, I think, to having a sense of being able to manage the illness in partnership with the specialists. Cannot overstate the gratitude to everyone on this forum. Life saving!

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My GP stopped my calcium supplement out of the blue quoting the course was completed. This was with no blood test and I am still on pred. I never had any real side effects from it but generally always took it with food so maybe that was why.

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A course of calcium? What a dippy idea!!!

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Yep exactly my sentiments

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