Feeling upset
Posted , 11 users are following.
There is a Facebook page called Surviving polymyalgia rheumatica without prednisone. And a person posting that she cured herself by following a very strict anti-inflammatory diet. When I tried to get more information (how long had she been ill, how did her recovery progress, etc) she took offense. I had suggested that if her recovery had been a genuine recovery from PMR she should publish a paper because there are thousands of us who could benefit. So now I feel a little sick because she took offense and refused to answer my questions. But what if she is right? But I know she can't be, not for the majority of us anyway. And by advocating this method she may be endangering people at risk of GCA.
0 likes, 134 replies
linda17563 Anhaga
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I will keep you all posted, when my sister and I are skipping down the road..swimming, running, doing all the things we dream about....hope it`s not too long....after all 30 days is nothing is it!!
EileenH linda17563
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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!
linda17563 EileenH
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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!
EileenH linda17563
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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
Anhaga linda17563
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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.....
Anhaga linda17563
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Anhaga
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julian. EileenH
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Perhaps its all the chocolate biscuits I eat that is helping my pmr?
I shall selflessly continue the treatment in the interests of science.
EileenH julian.
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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?
Anhaga julian.
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ptolemy Anhaga
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ptolemy Anhaga
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Anhaga ptolemy
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EileenH Anhaga
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ptolemy Anhaga
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Anhaga EileenH
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Anhaga ptolemy
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EileenH ptolemy
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Anhaga ptolemy
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Anhaga EileenH
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linda17563 EileenH
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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......
ptolemy linda17563
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EileenH linda17563
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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.
EileenH ptolemy
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ptolemy EileenH
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EileenH ptolemy
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julian. EileenH
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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.
EileenH julian.
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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...
julian. EileenH
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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.
EileenH julian.
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Anhaga EileenH
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EileenH Anhaga
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I did have one with dark chocolate on once - it wasn't too bad...
Anhaga EileenH
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EileenH Anhaga
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Anhaga EileenH
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Silver49 EileenH
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julian. EileenH
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EileenH Silver49
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Silver49 EileenH
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EileenH Silver49
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My first memory of thin triangular ones was home made ones from a friend when we were at Uni. Always gorgeous!
Silver49 EileenH
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Anhaga Silver49
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Silver49 Anhaga
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linda17563 EileenH
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The rice cakes with dark choc....quite agree, they are the only ones that are enjoyable....I wonder why
ptolemy linda17563
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EileenH ptolemy
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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!
linda17563 EileenH
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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
EileenH linda17563
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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.
linda17563 EileenH
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.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....
...
Anhaga EileenH
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EileenH Anhaga
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Anhaga EileenH
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Some I could live without (what is yucca anyway?) but pulses?
EileenH Anhaga
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ptolemy Anhaga
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I am becoming a real bore now that I have started reading books on our gut as well as nutrition!!
Anhaga ptolemy
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LayneTX Anhaga
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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!
linda17563 EileenH
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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!!
EileenH linda17563
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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?
ptolemy linda17563
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linda17563 EileenH
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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!!
Anhaga linda17563
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Anhaga linda17563
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EileenH Anhaga
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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.
Anhaga EileenH
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EileenH
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Any "research" that still quotes him is very likely to be of a similar hue.
Anhaga EileenH
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EileenH Anhaga
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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.
Anhaga EileenH
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ptolemy EileenH
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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!!
EileenH ptolemy
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EileenH
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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...
ptolemy EileenH
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EileenH ptolemy
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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...
ptolemy EileenH
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EileenH ptolemy
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ptolemy EileenH
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EileenH ptolemy
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ptolemy EileenH
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linda17563 EileenH
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EileenH ptolemy
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Tongues firmly in cheeks...
ptolemy EileenH
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Silver49 EileenH
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LayneTX Silver49
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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).
Anhaga LayneTX
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EileenH LayneTX
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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.
Silver49 EileenH
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LayneTX Silver49
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EileenH Silver49
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Can't see anything recent - can you pm me the link?
Silver49 EileenH
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Silver49 EileenH
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EileenH Silver49
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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... ;-)
EileenH Silver49
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Silver49 EileenH
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EileenH Silver49
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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!
Silver49 EileenH
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EileenH Silver49
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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.
Silver49 EileenH
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Silver49
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EileenH Silver49
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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
Silver49 EileenH
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Flutterbie57 linda17563
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FlipDover_Aust Anhaga
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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