Feeling upset

"so why hasn`t everyone been made aware of this, and got rid of their pain"

Because it doesn't work, that's why. There have been studies - I described one further up the thread - looking at diet. They don't "reverse" anything. An antiinflammatory diet may help your discomfort and pain and allow you to manage better, possibly even with a lower dose of medication - but it cannot reverse the underlying autoimmune disorder which is there all the time and damaging the cells in the joint tissues. If autoimmune disease could be reversed there would be a lot of people on such a diet! Without the DMARDs used in RA that damage continues and results in the knarled and twisted joints that used to be so common in people with RA.

The vegan diet I described further up worked on the pain for only half of the patients - they couldn't work out why. The diet was also so strict that most of the patients struggled with it. Some did continue with it after the trial period but many gave it up. I have a friend who is vegan and her diet is excellent (and delicious) but she's had years of practice! Things are improving with vegan restaurants opening and stores stocking the things you need for a healthy vegan diet - but when my friend goes out with friends she often ends up with a plate of vegetables for lunch! But a vegan diet isn't the same as this antiinflammatory diet - in the trial it was the removal of all animal protein that worked the miracle. All of it, even a single very small amount reintroduced led to the pain returning. And I think a lot of us have tried removing the nightshades - made no difference to me! Neither did leaving out alcohol. Removing all processed carbs, almost all carbs in fact, has made a bigger difference to me. Sugar is also inflammatory and contributes greatly to the weight gain with pred as well as the risk of diabetes. And sugar is totally unnecessary in our diet - the things these fad diets leave out are far more important for you to get all the nurients you need.

These books achieve only one thing - an improved bank balance for the person who wrote them! At least you got your copy from the library!

Quite agree on all you have said...and no, I wouldn`t pay for any of these books that profess to "cure" arthritis pain....afraid I`m an old cinic...

My sister is vegetarian....so dosen`t have the animal protein you mentioned in her diet I suppose...but is in considerable pain.  We often compare   ourselves, she wonders if she has PMR, I wonder if I have RA or we both have one or the other, but is there a test to know the difference though?....but pain is pain....and if I thought food would eleminate my pain/fatigue, I would even give up my two squares of 70% choc every evening to be  free of it!

How vegetarian? Does she eat dairy? The reintroduction of animal protein in the study was a single yoghurt or the equivalent! Animal protein isn't just fish and meat - it is eggs, milk, cheese and stuff. 

Choc like that has an antiinflammatory effect. As does small amounts of red wine - and a couple of pieces of really good dark chocolate and a glass of red is as good as a dessert for me 

I tried the elimination diets years ago to deal with my itchy skin, with guidance of a naturopathic doctor.  None of the eliminations worked - we tried dairy, wheat (not other grains I don't think, can't really remember), and nightshade family.  Only for one month each and not all at the same time, so maybe would have been more effective if I'd done it differently.  On the other hand, later on I did cure my skin.  I used the hydrocortisone ointment prescribted by my doctor, then, learning the hard way after many relapses, I started introducing other non-medical treatments, phasing out the prescription level, using only the weaker OTC, until finally I didn't need the hydrocortisone any more.  What turned the corner for me was using hemp oil.  I now use a very expensive cream which contains shea butter.  So my attitude towards prednisone all along has been the same - find other things that will help ease the prednisone out of my life as far as possible.  

The diets, and believe me I have read quite a bit and thrown up my hands in despair at having to spend so much time on organizing my food, seem contradictory in so many ways.  Give up tea they say.  But tea has anti-inflammatory properties.  Drink tea they say.  Vegetarian diets are healthy.  Vegetarians eat dairy so that's not healthy.  Go vegan.  Vegan diets really are deficient in some important nutrients, expecially B12.  If it's not healthy for growing children it probably isn't healthy for an adult, particularly an ageing one.    And so on.....

I think my reply is being moderated because of that dreaded word, you know, that plant which can be used to make rope.  They really ought to let that word be part of the acceptable vocabulary!

This is a test h**p

some very recent research (reported a couple of days ago) suggests that chocolate improves blood flow to the placenta and helps its function..They forgot to include a control group with no chocolate but lets not let that get in the way of a good story.

Perhaps its all the chocolate biscuits I eat that is helping my pmr?

I shall selflessly continue the treatment in the interests of science.

Exactly - why diss any research that shows chocolate is good   

Have you investigated different sorts of chocolate biscuits for completeness? You'd think that Bourbons (do you have them in OZ?) might trump choc digestives. Then Jaffa cakes will have vit C too. Or would that be a confounder?

Polyphenols in dark chocolate may improve blood flow to the legs.  

Polyphenols are also in milk chocolate, as the same sort of chocolate is used. It is just you have to eat several times more milk chocolate along with the sugar, cream etc etc to eat the same amount, which is not such a good idea! 

Anhaga, A friend of mine swears by the product of your dreaded word for her arthritis. They are doing research into it for arthritis as a friend has shares in a company that is doing it.

There is a non-psychotropic substance that can be extracted from the leaves of the unmentionable plant which is supposed to be very effective in treating inflammation.  Most of it is wasted as an unused by-product of the very healthy seed and oil production business we have in Canada.  It's legal, but hard to find and expensive to buy. All media talk about unmentionable appears to centre on the traditional medical uses for you know what.

Our village pizzeria makes gnocchi with the unmentionable flour - they are gorgeous! Now if they could add the useful stuff to them...

In UK you can buy the seeds of the unmentionable plant, some of the plants are really pretty, with terrific names. It is illegal to grow it though. 

My bedtime snack includes the seeds, and I have one or two tablespoons of the oil from seeds every day, but these, although supposed to be good for us, do not include the helpful c b d  compound which is in the leaves.  

When you think about all the really dangerous stuff the medics feed us, you't think that society would be a bit more open about this plant.  Prednisone, for example.  And apparently the poppies that pop up all over our neighbourhood, sown wild on the wind, are the kind that produce another unmentionable medication.  Not that anyone has tried to harvest them so far as I know!  

Someone growing it here in northern Italy was found out because his house roof melted the snow so quickly because of the heat lights you need...

When you think about the really dangerous stuff the medics feed us, prednisone for example, it does make you wonder why society is not more open to using you know what.  And we have poppies all over our neighbourhood which are apparently the kind that produce another unmentionable substance, although as far as I know no one has attempted to harvest them.  

He must have been growing it for money. Surely one or two plants for personal use hiding in plain sight amongst the other house plants would be doing no harm.  A few years ago some new immigrants here got into trouble because they were growing it - they grew it and used it as a herb, just like any other herb, in their cooking.

Yes, and me....

My sister lives alone and I do worry that she dosen`t always cook well for herself especially on bad days.....but she does have dairy, and fish when I maon at her....so I see what you mean.

It`s like me doing gluten free most of the time...(intolerant of gliadin (in all gluten, but not ceoliac (spelling?)) it`s in things you wouldn`t think it is....

I am so pleased my choc is antiflammatory.....it will shut OH up when he says should you be eating that!....now I have the answer, Eileen said it was ok because it`s......

Just have chocolate and red wine with the occasional pamper and life is good!

I can't eat wheat - I get a horrible rash. It isn't the gluten as I couldn't eat the gluten-free Juvela flour made from wheat starch. But in the UK the only way to get by was to use gluten-free - since, as you say, it's EVERYWHERE! Like sugar...

Here - pure rye, pure spelt, pure kamut! Being gluten-free made no difference to the PMR so I eat the occasional bit of bread. And a local cake is made with buckwheat, which is a closer relation of rhubarb than wheat.  

Sounds like a recipe 

Perhaps I should write a book of pamper recipes!

Go for it - if I can do a large chunk of a PMR/GCA one you can have the fun antidote one!

one of life's great mysteries is the lack of Bourbons in Aus. Biscuits that is. Not the alcoholic interloper. And certainly not cookies.

We've imported just about everything else from everywhere else. And there are more varieties of totally unappetising shrivelled rice crackers than I can poke a stick at.

But no Bourbons.

Anywhere.

.................... but wait. We have Tim Tams. If I may be so presumptuous as to type a brand name. Not to worry that the iconic Aus manufacturing company is now foreign owned. They still taste good. A bit like a chocolate coated Bourbon. Milk or dark. Or even white. With lots of variations limited only by the excesses of the marketing mind but like most variations not a patch on the original. Though I do accept that chocolate coated Bourbons may just be an ever so slight improvement.

They are of course expensive. Even with the continuous "2 for 1" and "family pack" and "special offer" and "50% off" of contemporary retail customer experience. It was so much easier when I just went shopping.

But wait. Relief is at hand. No international copyright or trade mark or multilateral trade restrictions. A certain, unnamed but well known, international food and other miscellaneous items chain with a restricted product range has come to the rescue. Their very own brand of biscuits so similar as to be almost indistinguishable. The only discernible difference is that they are perhaps "better".

And even at their normal, stable, never changing, relatively low, without frill, shelf price, they are heaps cheaper than the over priced, even when on ficiticious special offer, over rated genuine article.

Though I do occasionally yearn for a real Bourbon.

When we were in Sydney we went over to Manley - and found a British shop!

Are Tim Tams related to Penguins? You could describe them as sort of Bourbons with chocolate except the only colour change I noticed was in the paper wrapping and blue ones definitely tasted best. But no-one ever copied Bourbons successfully I felt. My Irish friend in Germany had a love affair with fig rolls - always top of the list when we did shopping for her in the UK. 

I'm still trying to work out the reason for rice crackers...

tim tams are very like penguins. The chocolate coated variety that is.

Penguins were my first taste (pun intended) of marketing. How to make individually wrapped biscuits a luxury item.

Its strange how our tastes develop. In large part an outcome of the culture in which we are dragged up. Different countries, different cultures, different foods. I've found it much easier to adjust to different amounts of chilli and related tastes than to an almost absence of chocolate.

The number of varieties of rice crackers on our supermarket shelves are somehow symbolic for me of large swathes of the world where chocolate or biscuits are not readily available. There aren't too many potato crackers. In Mongolia the kids seemed to go nuts over what looked like some form of dried hardened mares milk. A very alien, unappetising  taste to me, a treat for them.

There are indeed several outlets dotted around Aus specialising in unusual imported British foods. Just as there are Indian Asian, SE Asian and other outlets. German Christmas foods are a recent arrival. North American branded food shops haven't arrived yet.

Do I assume then that the international restricted product chain is Teutonic in origin?

Rice crackers.  My daughter was off wheat for a few years when a child.  You cover a rce gracker with peanut butter (I know you don't like that either) then add pieces of fruit, like raisins or cut up prunes or dried apricots, or perhaps some almonds, to make a face and banana slices for curly blonde hair.  A few veggie sticks on the side and presto you have a lunch fit for a little girl!  You can also cover with cheese and slices of veg and pop them under the grill for a moment to melt the cheese and hey, presto, a mini pizza! 

It's the texture I dislike - they taste of not a lot so there's nothing to dislike there really. I just don't bother eating bread if there is only wheat - unless there are oatcakes without wheat in them. Then you're talking!

I did have one with dark chocolate on once - it wasn't too bad...

Agree about the genuine Scottish oatcakes - that was another staple in our house at that time.  😋

Nairns - only company for oatcakes! Others put wheat in them. Why, I ask myself? And they now do gluten-free ones too. And cheesy ones.

Darling daughter had a tin specially designed to hold a roll of oatcakes, woe betide anyone who filched them!  It might have been a Walkers tin, but we refilled with Nairns.

There's a huge variety of flavoured oatcakes now. I always liked the cheese ones as a child....still do. My grandchildren like dry oatcakes for their bedtime snack......thick triangle ones. I better not give the make or this will disappear!

a good assumption

Doubt it - Julian, Anhaga and I named names. Don't think the computer recognises real food. 

I suddenly realised after I posted that you both had named them. It's Stockans and they have to be thick not thin. I have to agree with my grandchildren.....thick has a different taste. They make a thin variety!

Not a make I've heard of - triangular ones used to be better it's true! But Nairns get everywhere , even England!

My first memory of thin triangular ones was home made ones from a friend when we were at Uni. Always gorgeous!

I think it's an Orkney firm but not certain. I occasionally make my own. My husband's aunt (long deceased) made wonderful oatcakes and her own crowdie. I think she thought I was just being polite when I declined everything else in favour of the oatcakes and crowdie. Her griddle scones were delicious. 

Living as I do in New Scotland, used to spend summer holidays in Cape Breton at a lodge run by people of Scottish descent and they shared their amazing oatcake recipe.  I must find it and make some.  Might get me back into wanting to cook something other than soup...

I hope you find the recipe and enjoy making oatcakes. I may feel inclined to do the same but it will be tomorrow.

I am starting today cutting out carbs....is there any that we should continue eating, I hear conflicting opinions on this....that some are vital to health?

The rice cakes with dark choc....quite agree, they are the only ones that are enjoyable....I wonder why

 

There are carbs in vegetables for example, which you should continue eating, although parsnips for example are not such a good idea as they are very high in sugar. It is the simple carbs that you should cut out. The complex carbs are fine. This includes whole grain bread and pasta. Google for a list. I must admit I did cut out gluten as well, with the occasional slip! 

Much the same as ptolemy - technically you DON'T need carbs for life but there are always disputes about that.

I eat almost nothing that comes in a package - I don't eat highly commercialised wheat so that helpfully reduces what I can eat. Wheat gets everywhere! It isn't gluten. Don't take on packaged gluten-free baked stuff - it's stuffed full of sugar and "stuff"! 

A simple "rule" is no white flour, no sugar, reduced root veg (which have considerable carbs) including sweet potatoes - they have more carb than plain spuds whatever people think! And some fruits have a lot of sugar - you can have some but too much isn't goo. Berries are best it seems.

The new version of the Atkins diet has lots of quite useful guidelines and recipes - but far be it for me to recommend it!

Thanks for that...I feel uncomfortable with the extra weight, and know I can go some way to reduce it, if not all.....

Have got the"mindset" from today....haven`t had it before now, which I think is a lot of it....

Doing veggie lasagne today....with out the pasta for me!  OH will have it...

I don`t eat what comes in packages....fresh only, so ok there then....and love eggs....so expect it will be a lot of them with salad etc....

I do get dizzy/shaky very quickly when hungry, since being on pred...so hopefully snacking on a few nuts should help....will give it my best anyway, thanks again and will look up the new version Atkins

Another site I enjoyed for this sort of food and info is one called Diabetic Mediterranean Diet blog by a doctor, Steve Parker. The info is sound and explains many of the myths about "needing" carbs. Maybe need a bit - but nothing like what most people eat these days.

I make meat lasagne - using ribbons of courgette instead of pasta for me (cut with a potato peeler) and greek yoghurt mixed with a beaten egg instead of the bechamel sauce. Meat sauce made with tomatoes is low carb - despite the recipes I find with sugar! What's that about - cook the sauce for longer like Italian mamas do and the tomato flavour mellows. 

You are right - the mindset matters. You may find the dizziness is there at first for some days on the lower carb regimen - I think it is low blood sugar due to the effect the pred has that causes that. Once your body has learned it isn't getting its carb fix it starts to produce energy from body fat (which is what uses it up) and your blood sugar level should remain much more stable rather than peaking with eating carbs, inducing production of too much insulin which results in the blood sugar level plunging making you feel wobbly and hungry.

Thanks very much for that, will now look up that site....courgette ribbons brilliant idea...I do the greek yougurt mixed with grated cheese, then OH is happy as well.

.I can see myself as an italian mama....it`s my most favourite country of all....as we have posted before.... Lake Garda....dolomites...oh yes!

Yes, I have noticed peaks/troughs with energy.....

Great advice as usual...thank you Eileen....

...

Actually it's yams that are significantly higher in carbs.  Sweet potatoes are slightly higher, but a very good source of vitamin A. I think there's not much to choose between them, so nice to use them both for variety.

But they are higher - and since the discussion was about reducing carbs it is a misapprehension that was relevant. If you want to leave out potatoes as carbs - then you also leave out sweet potatoes. If you aren't bothered about carb content then of course it is nice to have the variety. But many people think that if you stop eating ordianry potatoes and substitute sweet potatoes you are savings carbs. But you aren't. That was the point.

Okay, I take your point. On the other hand, a list of high carb veggies to avoid is a little worrying to any vegetarian:  Potatoes Peas Corn Yucca Parsnips Beans Yams Legumes  

Some I could live without (what is yucca anyway?) but pulses?  

Yes - but are we talking vegetarian diet here? Parsnips don't exist in half the world (they are a rarity here), I've never seen yams here either. Most of Europe manages quite well without corn. The cultures and foods are different - and I would expect a vegetarian to know enough about what they eat to make a decision. Linda eats cheese, other dairy and eggs so isn't intending being low on protein. All she said was that she was making a veggie lasagne - I eat it too. But I'm not veggie.

In fact sweet potatoes are supposed to be good because of their high fibre, which is good for our friendly gut microbes. Also research has shown that they can improve blood sugar regulation in spite of their Glycemic Index, which is good news for those with diabetes. They are also full of antioxidants. They are an anti inflammatory and apparently they are also supposed to have antibacterial and anti fungal properties. Also they are a good source of beta carotene. In fact they seem to be a wonder veg. It is a good idea to eat them with some fat apparently as this does something or other too. The foods you eat together is important it seems.  I did read that they were looking at something from sweet potatoes for people with MS because of the anti inflammatory properties. 

I am becoming a real bore now that I have started reading books on our gut as well as nutrition!! 

Not boring at all, I think it is fascinating. The more we know about our nutrition needs the better. 

Definitely not boring!

I recently read somewhere that brocolli shouldn't be eaten with protein.

Some thing about enzymes maybe??? Maybe not allowing proteins to breakdown as easily. Don't quote me

I too read sweet potatoes were anti inflammatory but my Rheumy said no to them in my diet (think because starch)! I often ignore her on that! I didn't realize we can eat them raw, so now I love sweet potatoes raw. 

Do do y'all know Jicima? A tasty white root veggie, nice to cook with and when real fresh raw is sweet. But! A friend of mine now has Parkinson's and I saw an article that said Jicima can contribute to Parkinson's. My friend loves Jicima.  Parkinson's runs in his family however.

I'm going to start cooking more with ginger! Highly anti inflammatory I read! I hope so!

 

Quite right...I`m not veggie, had lots of bits of veg to use up...so lasagne was the answer (no pasta for me) and I do eat dairy.....

Talking about the gut....the book I mentioned in another post where we can get rid of nearly all Arthritis in 30 days!!  it said all the answer is populating the gut correctly....so there, it`s as easy as that!!

"it said all the answer is populating the gut correctly....so there, it`s as easy as that"

Of course it is - so who would like to move in? 

I do understand the basis for the claim - and there is increasing evidence that it can have an influence, even in more mainstream medicine. However - it is all rather vague. If they are so sure - why aren't they working on producing probiotic-type capsules with the requisite stuff to colonise the gut?

I think the book has a point, but I am not sure it is that easy to populate the gut correctly. It goes back to birth, if you were born by C section, if you had breast milk, if you had antibiotics as a young child, not to mention what you have been eating over the years, plus a myriad of other things.

 I  do remember a programme last year about a little boy who is always very ill, they tested his gut to see what protection against illness that he had (that`s my very ignorant way of putting it I`m afraid) they were shocked to find none....so they wrere going to transplant some (whatever he needed) into him....

My husband hasn`t been ill since he was 15 (70 now) never catches anything off anyone.....he says he had the mother of all flu and that did it!!  His whole family are like that....mother lived to 93....I do think genes play a percentage of it too......They all like alchohol (my husband ...beer)

I think he`s a carrier....to me!!

 

Apologies. I wasn't following the thread closely enough, so my remarks were more general.  And I do believe that our microbiome is incredibly important.  I've heard that if every human cell in your body were to vanish no one near you would see any difference - you'd still look like you because of all the little creatures that share our space!  

It's now thought that early antibiotic use at key moments in early childhood is implicated in some cases of autism, because the gut becomes populated by a microorganism that produces neurotoxins.

"It's now thought..."

By whom Anhaga? Is this the same standard as Andrew Wakefield's accusation of MMR vaccine causing autism? There are a lot of very dodgy claims out there - many of them because they want a scapegoat to sue. 

Scientific research.  Have you heard of The Nature of Things a long-standing science programme Canadian Broadcasting Corporation, just one place I've heard of the gut-brain connection.  I'll pm you links to a couple of programs.  Don't know if you'll be able to view them outside this country.

And a quick google shows that the most recent "claim" about this that I could find is still quoting Wakefield as having "established a link" - which he certainly did not. He has been investigated and thoroughly discredited as having fabricated his results as well as having not obtained ethical approval for his "work". As a result of the campaigns backed by his lies many children have caught measles and some have died. Several potentially fatal infant diseases have resurged because of the fall in herd immunity caused by the resulting mis-information disseminated by the proponents of "immunisation is dangerous".

Any "research" that still quotes him is very likely to be of a similar hue.

Where did this come from?  No one has been talking about that vaccination fiasco.

Please read my posts properly - I may not have been entirely clear but what I said was that an article that supports the gut microbium theory is QUOTING Wakefield as "good science". I then suggested if they still think he is right then their own work has also to be suspect. My second post was really a continuation of the first.

Programmes made for TV take a populist theory and make a TV programme - they're looking for viewing figures not accurate science - in fact accurate science tends to make boring TV for most people. There used to be a programme in the UK called Horizon - it may still exist, I don't know. It was similar to the one you mention, presenting science for the man in the street. In recent years it had presented some very strange stuff - quite a bit of which was greatly disputed by the scientific and medical mainstream. That isn't to say there may not be some truth behind it - but it rarely means it is substantiated. And it makes good TV viewing.

I did find a study that looked at 20 autistic and 20 non-autistic children's gut flora - they were different. But that doesn't mean it was due to antibiotic use - the most common reason for different gut flora is different dietary habits. Many autistic children have quite restricted diets and other habits that might change the gut flora. The conclusion by the authors was that there were possible other reasons.

A link I found in Spectrumnews in 2012, in their in-depth autism section, says:

"Contradicting a popular hypothesis in autism, a new study from Australia has found no connection between autism and bacteria in the gut. The analysis, published 20 September in the journal Autism Research, reports that the gastrointestinal (GI) systems of children with autism harbor the same bacteria as those of their typically developing siblings"

This study is a bit bigger than most others and was done on siblings. There was no difference between autistic children and non-autistic siblings when it came to gut flora.

I'm not saying it isn't the case - but in late November 2015, so very recent, the same Spectrumnews says:

"So far, this idea is supported primarily by studies in mice, but some are thrilled by its potential. “I think it’s exciting; it’s a new hypothesis for the cause of autism and could potentially have a lot of power to help kids,” says Jason Shepherd, assistant professor of neurobiology and anatomy at the University of Utah."

Even the people doing the work haven't got to humans yet. Children aren't mice and correlation is NOT causation. It is still a hypothesis, a theory. So no-one should be presenting it as anything more than an interesting idea that still needs a lot of work done on it. But that might make the TV programme less sensational of course.

It is all a long way from saying that "early antibiotic use at key moments in early childhood is implicated in some cases of autism".  But it is interesting. 

I agree about "populist" televison.  In fact Nature of Things is an exception to this, and I would trust what we are told.  The examples given in the programs are very compelling.  Also the new idea that babies born through caesarian section should immediately be exposed not to the random bacteria in the birth room but to their mother's vaginal microbes is not considered a flakey idea but a reasonable way to help make sure the child is given the best possible start to a healthy life.  It seems reasonable to believe that we all need to look after those little creatures within us.  Perhaps we may have to agree to disagree about this.  

"If they are so sure - why aren't they working on producing probiotic-type capsules with the requisite stuff to colonise the gut?"

Interestingly enough they have started working on the idea, they are using faecal matter (other people's) in the US which they are putting into the gut and it seems very succesful with C difficile to date, also they are looking at IBS. There has been some research on doing the same thing for MS and Parkinsons. Rather than a probiotic pill, a poo pill!!

Yes, I've seen the stuff about faecal transplants for C.diff - wonder how the patients accept it!  But not as pills yet are they?

They do come frozen it seems! And they say patients accept transplants through a nasogastric tube.

I don't have a problem with that work, nor with the concept, but the jump from mice to a TV programme saying "it's the cause of autism" is still a step too far. 

Now - have you seen the theory that if you change the gut flora in fat people...

No pills yet!! But you never know. I don't know how I would feel about having someone else's poo put into me. I suppose if I thought it would get rid of PMR for example I might say yes. 

The report on the CDiff work said that they stopped it early because the transplants were working so well and patients were complaining when randomised to Vancomycin!

And absolutely - when someone starts a PMR trial I'll be in the queue! There was some discussion about work being done in middle England somewhere with hook worms in autoimmune disease. 

Personalised poo pills - lose weight, cure your rheumatics and improve your skin...

There does seem to be quite a lot of info on the possibility of the gut flora being manipulated to reduce obesity. As far as I can see it seems quite theoretical at the moment. I did read of a Japanese boy who was enormously fat and it was discovered he had hardly any variation in his gut microbes. They gave him lots of prebiotics and this helped increase his types of his microbes and he lost weight. A nice story.

Wonder what they used...

Would be nice to know. Probably the doctor is now a diet guru charging a fortune for it! I think it was a lot of fibrous stuff which I am sure tasted revolting.

It was Japan - will have been someething really strange by our standards no doubt. However - I had a bit of a google and bananas and kefir seemed to fit the bill too!

Perhaps we can make a fortune by offering a banana and kefir mix up that improves your microbes and makes you slim.

Very interesting reading your posts....and wondered when Kefir would appear.  It was on "Dragon`s Den" not long ago...as the wonder mix for everything....not sure if they took her up on it though, to rpomote it further...

Ata girl - you draw up the business plan! 

Tongues firmly in cheeks...

I am on it right now!

Not sure how good this news is or how far away it will be! I have just watched the Scottish news on STV and there was an item on the local news showing a conference? In Dundee with some discovery of an enzyme they have found which needs to be shut off to 'cure' some auto immune diseases. They are working with a Japanese pharmaceutical company to presumably come up with the drug to switch it off! I didn't pick up on the whole item but I shall look out for it again. Perhaps you can google it, Eileen. 

I just read an article saying a new drug that might help PMR, tocilizumab.

they said cost is an issue, so if current treatment is cheaper it might not go forward... That just really stinks (since I shouldn't type the word I wanted).

Hi Silver and Layne. The further along I get on this journey the more I believe I must get off pred.  Several things - one is that my body developed PMR for a reason or reasons, and I have to figure out what those are and solve those issues.  Another is, there is no point striving to get off pred if the body is still the same as the one that got sick in the first place.  Personally I don't want new medications, another partial "fix" like pred.  I want solutions to the causes of my ill health.  

There has been a study for the last few years with tocilizumab in GCA - it has been talked about on the forums several times in the last few months. Although the final report isn't out yet, it does look as if it has worked well to get GCA into remission more quickly. There was to have been a study on it in PMR - but that had been shelved because of the potential costs.

One lady on here asked about it recently because her doctor wanted to use it for her but she would probably have to pay for it herself as it would be off-label use and her insurance wouldn't cover it. I think she has found some funding but I'm not sure.

Cost will be an issue: somewhere IRO $17,000 per year. Pred is pennies in comparison. At present it isn't clear whether even for GCA whether it would be needed on an on-going basis or whether you give a few months therapy and then have a few years (or hopefully even longer) in remission. It is already used in RA and off-label for some other forms of vasculitis.

Silver - couldn't find anything so far.

I googled enzyme and autoimmune diseases update Dundee. If you scroll down you'll come to an article. I have been unable to find the item on STV  local news which was what I was trying to find. It's Dr Philip Cohen who seems to be the person named on the research though I am sure there will be others. He's renowned in his field.

Oh! Eileen! I remember the coversation now! Yes, sorry, thanks for reminder.  

 

He's been there for forever! 

Can't see anything recent - can you pm me the link?

I'm sorry I am a technophobe, Eileen. I managed to go on to STV player for Wednesday and watched the item again. What it said was that research in Dundee has discovered an enzyme which causes inflammatory and autoimmune diseases and they are working with a Japanese pharmaceutical company to produce a drug to shut off the enzyme. He mentioned lupus, fibrosis and other autoimmune diseases but did not name any others. I think from what I could pick up the research is not hot off the press but the link with the drug company is relatively recent. I hope this is of some help.

You are right. He has been around forever. Thought you would know of him!

Obviously won't work in Italy - I don't pay my licence... 

Never mind...

Is it the DUB stuff? "Regulation of the Ubiquitin System by Deubiquitylases and Phosphorylation" I won't be offended if you ignore that...   ;-)

I arrived in Dundee just a few months before him but he is older than me! Wonder if he will ever give up!

Yes. I think it is as that is research in which Cohen was involved. Was it 2014? Is there a reference to kinases which I am sure you have mentioned before. I am about to look up some Latin which I recall and which my husband doesn't. I thought it was the answer to a crossword clue but although it fitted the letters we already had it was the French that was required! My pea brain will be on overload today.

Calm down!!!! Latin? All Greek to me 

i always got good marks for languages at school, French to O-level and German for a year, but I hated them as subjects. So different when you live there though - thank goodness!

 

I didn't take languages but Latin and French were mandatory! I chose to study Biology and Chemistry! My long term memory seems to be good as my recollection of the Latin was correct. It probably doesn't bode well for the future and dementia as that's the short term!!!😳😳 I know someone else who used to be in Dundee, still working and coming up to 70!! That may, of course, ward off dementia. You'll be fine as you are keeping your brain active.😀😀 I'm trying to keep mine active with plenty activities for the brain but also trying new ones. I can't remember who, on this site suggested Zentangle but I've tried it and I'm enjoying it.....very relaxing. How is your flare? Has there been any easing? I do hope there has. Did you overdo it when your family was staying? I think mine was withdrawal as I had surmised. I am feeling better and the pain has eased. 

Only had a daughter over - no-one else, and we went out to eat 

I did sciences too, French was compulsory but by the time I got to grammar school Latin had been dropped. i was going to do it in 6th form but they messed up the timetabling. You didn't need it even for medicial school by then so it didn't really matter.

Are you feeling any easing yet? I remember Latin was no longer required for medical school. I sometimes find it useful for meanings

Sorry .....the reply went all by itself before I had finished!!!😳😳 I meant to say for the meaning of words in English. 

Grrr - I spent ages trying to get on the site last night! Having a hate the internet week - too many tourists probably!

Yes, thank you, I do feel a bit better. To be honest, I don't think I have felt this "fluey" with PMR before. But it can't be that bad - I walked around Innsbruck for ages on Wednesday. As I say, it's the hills I could manage without 

Glad to hear you are feeling a bit better. I was out for most of the day yesterday and then again in the evening so no internet for me. I feel none the worse for my excursions today. OH has a nasty virus which he can't shake off and I am trying to avoid. I woke to a good covering of snow today but I think the sun will melt it. I'll be disappointed as it covers the garden and I can't see what needs to be done!😀😀I hope you continue to improve.

11 days into your 30 day diet Linda - how are you and your sister ? I am going to change my eating habits (again), so am interested to see how you too go on the anti -inflammatory diet.

I have to say I agree with you wholeheartedly on this.  Something is causing the increase in autoimmune diseases.... The bleedingly obvious one is the food we eat - given our gut is responsible for the great majority of our immune system.  Research on this field is exploding along with the 'eat real food' movement. 

They have even found out what the appendix is used for! 

Im not giving up pred any time soon, but my goal is to deal with the cause, not the symptoms of autoimmune diseases.  I'm scared to death I'll get another, worse, type. Relying on new drugs is not the key to all of this. 

But bugger me, I'd strangle a bottle of red wine.  Lol