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Date: 09.07.2014
From: Julie

Subject: newspaper article

http://www.standard.co.uk/news/health/rheumatoid-arthritis-treatment-too-little-too-late-compared-to-other-european-countries-7819736.html

hope the link works it looks a bit long.

Might doctors be going to change the way treatment is given, by missing out the way they give everybody the same meds in the beginning mxt, sulph etc., maybe they will go straight to the biologics and save themselves money and us time wasted trying them ????

Quite interesting article, found by accident only because I was looking to see what health treatments are given in other EU countries and whether treatment has to be paid for - I'm just fed up and day dreaming of moving abroad, just pipe dreams it wont happen:(
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Date: 09.07.2014
From: bsk

Subject: Re: newspaper article

Thanks for posting, Julie. Interesting that first line treatment costs as much in the long term.
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Date: 10.07.2014
From: Sean

Subject: Re: newspaper article

Do biological drugs really stop rheumatoid arthritis "in its tracks "- as this article says.

From a complete outsider point if view - I see that people get either temporary relief followed by the need for another drug or they have such bad side effects that they need another drus straight away?

Who has had long term success on Biologics?
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Date: 10.07.2014
From: Julie

Subject: Re: newspaper article

I remember when I was first went to the clinic, the rheumy said to me that we will try the usual dmards first, if they don't work then there are the biologicals which stop it in its tracks.

At the time it was all so new to me, and I was scared of the future I did think well why don't you just give them now to stop damage that might be happening while we wait to see if these drugs work.

It is now 17 months later (not long as others I know) but those first few drugs still aren't working, I have now been discharged from the fast track clinic, waiting for appointment to go see head rheumy, six weeks still no appointment - BUT I was told at my last clinic appointment that he is going to put me on antibiotics, Minocycline.

I think its just a suck it and see policy, which is wrong, if there are drugs which they know will stop it then we have the right to be given them.

I am looking forward to being treated with the antibiotic protocol but I wish they had done this months ago when I asked about it, but I was made to feel that they were in charge and I shouldn't be suggesting anything.

It will be interesting what happens at the Belgium meeting.
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Date: 10.07.2014
From: Paula-R

Subject: Re: newspaper article

I started Enbrel November 2012, I felt the benefit of it the next day, at my twelve week assessment I was in clinical remission and pleased to say that I still am. No pain killers needed at all since I weaned myself off steroids (took them while waiting to start Enbrel).

I have had no side effects whatsoever.

I know that Enbrel can stop working at any time, have read on other forums of this happening, but at the moment I am just enjoying having the old me back.

So yes Sean, anti tnf's can stop RA in it's tracks.
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Date: 10.07.2014
From: Mandy

Subject: Re: newspaper article

Rituximab has given me my life back.
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Date: 10.07.2014
From: bsk

Subject: Re: newspaper article

I know people on biologics who are doing very well. It tends to be those of us who are having problems that end up posting on forums IMHO.
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Date: 11.07.2014
From: Julie

Subject: Re: newspaper article

your right bsk, my g.p. told me off for looking online he said for the few people that drugs don't work for (in our cases 100's) there are millions and millions that they do work for and they are the ones you don't hear about because they don't need help. But I have noticed on here that people don't just come on saying they are still feeling ill, there are lots of people who support others by saying how good their treatment has been.

I know I scan through everything when I am feeling worse or am worried about another twinge or result.
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Date: 11.07.2014
From: bsk

Subject: Re: newspaper article

I look everything up. I want to be well informed. But you are right, it can skew your perspective.
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Date: 12.07.2014
From: Chris

Subject: Re: newspaper article

I've had 3 biologics, all have been amazing at first and then failed after 9 months or so.
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Date: 12.07.2014
From: Julie

Subject: Re: newspaper article

What do they do Chris when the biologics fail?
Do you have RA and have you already been on all the dmards? Antibiotics maybe?

It must be so disheartening to think you are going onto something and each time thinking that it might not always work, don't know how you cope.
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Date: 16.07.2014
From: Sean

Subject: Re: newspaper article

Here are the statistics on how many benefit from biologic drugs for RA -

http://arthritis-research.com/content/13/1/R25/table/T2

70% of people get a small 20% improvement
falling to 52% of 31% getting a 20% improvement if you have tried more anti TNF's than 1

Only 40% of people get a 50% improvement
falling to 31% then 20% based on prior anti TNF use.

Do these figures sound surprising low? I would think that based on this that people do not always post on forums when they are struggling - I think there are many out there sufferring in silence.

Statistics have been taken from this study in to the efficacy of biologics -

http://arthritis-research.com/content/13/1/R25
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Date: 16.07.2014
From: Colin W

Subject: Re: newspaper article

Sean , I think you missed the point of the artical , its the early treatment that is important in threating RA regardless of the drugs/treatment , when I developed RA they took over two years to give me methotrexate & by then my joints was damaged , its the early treatment that can save those of us that are severly affected & its only about 30% of the people with RA & will end up needing surgery at some points & some within a few years of getting RA

if you read the post on the forum you will know the biologics maybe our consultants new best freind but alot of us suffer the side effects from them & the people that do well on the dont tend to stay on the forums so its hard to compare . I am on my third & know its not working like it should & think I need rituximab which is the only B-cell treatment at the moment but no idea when they will change it .

for those of us with severe RA antobiotics is not the answer but works well for some with milder RA , we know there is a link between our stomachs & wish they would look into it alot more but its the drug companies that invest the money for research
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Date: 17.07.2014
From: Jackie

Subject: Re: newspaper article

Colin I totally agree with you. I started Minocin within three months of developing my first RA symptoms. I believe because I began treatment so quickly its the reason Im now in remission. Minocin is the only drug I have been on since it all began last year.
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Date: 17.07.2014
From: Colin W

Subject: Re: newspaper article

hi Jackie , I realy wish in the UK our consultants were not totaly against the use of Minocin , they are happy to give out meth/sulpha & onto the biologics when a cheap antibiolic would work , just pleased it works well for you
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Date: 17.07.2014
From: Julie

Subject: Re: newspaper article

I wonder if there are many illness's with so many different treatments. I am going onto antibiotics but the more I read about that I wonder what problems will come with it.

I have read that minocycline can cause cancer of the thyroid and make endocrine system go wrong, my problem there is that I already am on meds for underactive thyroid, have been for 30+ years, so do I want the worry of thyroid cancer?

At the moment I have found since stopping Sulpha, steroids and nsaids I hardly have any pain at all which is puzzling, so I don't even know if they will say stay as I am taking plaquenil or go onto antibiotics to see what happens.
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Date: 17.07.2014
From: Jackie

Subject: Re: newspaper article

Julie all drugs have side effects and yes Minocin does too but thyroid cancer ? Only in very very rare cases.
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Date: 18.07.2014
From: Julie

Subject: Re: newspaper article

Hi Jackie, I read about the thyroid cancer from a drug information site (I read that many I cant remember which it was) and yes your right they all have side effects and I was like this when they said about going onto Methotrexate. I was diagnosed April 2013 so not at beginning of it,

Did you notice any herxing when you first started Minocin? Just wondering because they say as bacteria is being destroyed by an antibiotic you get worse symptoms.
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Date: 18.07.2014
From: Jackie

Subject: Re: newspaper article

Plaquenil can cause retinal toxicity which can lead to permanent vision loss, but also very very rare. I did suffer with Herxing about 8 weeks into treatment, terrible pain in shoulders and neck. This is why the pulsed low dose method is best so as to keep this to a minimum. Its normal to feel worse at the start and this treatment is very slow so you have to be patient.
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Date: 18.07.2014
From: Julie

Subject: Re: newspaper article

Jackie, do you think you Herxed because you had a bacterial infection which was not known about and which may have caused symptoms like RA? Sorry that sounds a bit condesending and rude, I dont mean it to be, because I know you were diagnosed with RA, but I think you probably understand what I am getting at.

I did know about the retinal toxicity but I do test myself regularly with the chart and I am really lucky that my optician who I registered with is actually quite an important man in our eye hospital (only know because the owner of the shop told me how lucky they were to have him) and he knows I am on plaquenil and gives me quite intensive examinations every 3 months or so. It is also a type of antibiotic isnt it, is it used for malaria or something, suppose if it kills malaria it will kill any little bug bite we may have.

Oh I dont know Jackie it is so hard learning these things and making decisions, I feel as if I know more than some of the doctors do, especially my g.p. bless him he is lovely and he does listen to me which means a lot.

Do you have any limitations or pain at all now, only ask because I say I am really well at moment but I do know I have limitations, kneeling down is a no go area so is washing windows, oh and one really irritating one I cant scratch my back under bra area it drives me mad, grand daughter bought me a back scratcher the other day and its heaven to use it.
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Date: 18.07.2014
From: Jackie

Subject: Re: newspaper article

Hi Julie, I don't buy the idea that my immune system just suddenly decided to start attacking me for no good reason. I believe a combination of genetics, past infections, leaky gut must lie behind these diseases. Im not sure about Plaquenils antibiotic properties, I would describe it more of being an anti-spirocheate / anti inflammatory drug. Sulfasalazine is a combination of an antibiotic and aspirin type drug. You ask if I have any limitations or pain now. In the mornings my feet are still a bit stiff but that's gone in no time and no Im not in any pain, just the odd twinge in my right knee. Everyday I note more improvements and like you, about 4 months ago I was using a spatula to scratch my back ( I didn't have a back scratcher)but now I have full range of my arms and only this morning I got up at the crack of dawn and walked three miles to go and pick my car up from the pub car park in the neighbouring village, as I had a few too many last night !
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Date: 19.07.2014
From: bsk

Subject: Re: newspaper article

Jackie, I agree with what you say about not buying into the immune system attaching you suddenly. I've had a lot of chest infections (mild lung disease) and, therefore, a large number of antibiotics in my life. I also used cadmium paint for many years, not understanding fully the toxicity of it, stupidly. I've also had irritable bowel for some time. I think my immune system changed about 15 years ago, gradually. I suddenly started to overreact to insect bites and my sense of smell changed. I also believe there is a strong hormonal component. I used to have terrible period pains and appalling pmt. When I was in my 40's I was put on progesterone treatment. I don't believe it is coincidental that many women get RA during or just after the start of their menopause. Of course, that doesn't apply to everyone but I think it is a factor for myself. There is some research to back this up but not much.

I also have had raised liver enzymes on mtx and sulphasalazine. Started on Lef recently and won''t be surprised if the same thing happens. Again, I think that is linked to toxicity of substances I have used in the past. Just a guess but it makes sense to me.

Sorry to ramble on here. I have changed my diet significantly of late and will be interested to see if it makes any difference. I've certainly lost weight, which is not a bad side effect!
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Date: 19.07.2014
From: Jackie

Subject: Re: newspaper article

bsk I forgot to say hormones in my list of suspects, and I too don't believe its coincidental that women seem to get diagnosed with RA during the menopause. Some may argue that men get RA and their hormones don't fluctuate like womens , but they do. Men go bald due to hormonal changes and childrens growth spurts are all driven by hormones. I too was put on progesterone treatment for period problems, I think it was called Norethisterone,and I have had bouts of IBS in the past. Very similar backgrounds regarding illnesses.
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Date: 19.07.2014
From: Sean

Subject: Re: newspaper article

Hi Jackie

Regarding Antibiotics - I have lovely neighbours with 3 young boys and the lady is French.

In France after a course of antibiotics the doctors prescribe sachets of a probiotic yeast called Saccharomyces boulardii to help the gut recover and help the good gut flora rebuild.

I have always been 90% sure - since age 18/19 that my gut was the source of my illness. 30 years now!

If you look on the Roadback website many of the volunteers and many of the posters do not just take AP therapy - they are also on a gluten restrictive diet.

I see gluten free as sort of an AP therapy - it doesn't kill the bugs but it prevents the gut bacteria from entering the body. Low carbohydrate diets (and fasting) can also kill off certain gram negative bacteria that fuel our diseases.

For about the last year or so I have also been taking a Sheeps milk yoghurt most days (from waitrose and sainsburys) that contains a good balance of bacteria that can help out-compete the gram negative bacteria - which I try to take it I have a carb heavy meal.

This study here from 1999 - even identified that in RA the gut bacteria change during flare and exacerbation periods.

http://www.ncbi.nlm.nih.gov/pubmed/10643276

My thoughts are that if they prove that bugs (like Klebsiella in my AS) and proteus / mycobacterium / gingivitis for RA are causing arthritic disease then it follows that other proteins (foods) can also trigger and drive these disease. 100 years of research points to this also.

I don't think that one thing can fix these disease - as they are multifactorial - and I agree that hormone balance plays a role (our western diet is hugely estrogen heavy). I also think that once the disease is active then the bodies balance of minerals goes haywire - so believe supplements can help and are needed to repair damaged tissues (for example I swear by manganese to keep my knee ligaments strong and zinc and selenium to detox heavy metals).

There was a tv show on a few weeks back that highlted the lack of minerals and vitamins in vegetables produced by modern farming - we farm the same plot of land time and again with the same crop pulling minerals from the ground.

Bsk - regarding progesterone this recent research found that t-cells become regulatory t-cells when progesterone is applied - could be a really promising way of helping autoimmune diseases in the not too distant !

http://www.purdue.edu/newsroom/releases/2013/Q3/researcher-finds-way-to-convert-blood-cells-into-autoimmune-disease-treatment.html
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Date: 19.07.2014
From: Jackie

Subject: Re: newspaper article

Sean thanks for the info. I joined the roadback forum 12 months ago and yes many people on there are not taking antibiotics but most do and combine diet and AP. I am going to a clinic that you too know quite well, I have been for quite sometime. I don't feel comfortable with just relying on diet when RA is involved, its too dangerous and my diet has always been pretty good but of course now its even better (apart from the red wine binges ! ).
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Date: 19.07.2014
From: Jackie

Subject: Re: newspaper article

P.S, Sean I have to say that I think people chuck supplements down their throats like sweets. I would rather eat 4 Brazil nuts a day than spend £10 plus P&P for a blistered packet of capsules. When I open my fridge, inside it looks like a garden, so much organic salad I sometimes lose the will to live. Gone are the days of cream cakes, pastries and stodge. When this boring diet starts to really upset me I tell myself this " A MOMENT ON THE LIPS.....REPLACEMENT HIPS !!!"
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Date: 19.07.2014
From: bsk

Subject: Re: newspaper article

Jackie, I'm doing the same at the moment. However, I'm not finding it boring as I'm varying things a lot and adding flavour wherever I can. I consider it a lifestyle change, not a diet.

Thanks for the link, Sean. I'll have a read when I've got a moment.
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Date: 19.07.2014
From: Jackie

Subject: Re: newspaper article

bsk I add flavours too, Im into fresh thyme at the moment sprinkled generously over everything.. Ive been doing this diet "lifestyle change " for a few years now, even before the RA. I had a lot of menopausal health scares and something needed to change. I know we are not meant to promote anything on here but Aldi do the best frozen wild Alaskan salmon, much cheaper than Waitrose and the olive oil has won awards. I just sometimes crave a big mac with extra large fries and a full fat coke and Im fed up with my house smelling of garlic and fermented cabbage :)
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Date: 19.07.2014
From: bsk

Subject: Re: newspaper article

I don't have an Aldi near me, unfortunately. But I do have a good fishmongers who give me discount on their stuff as I was one of their first customers when they opened.

I do think you can sometimes have a big mac and all the trimmings occasionally, unless you are on a really strict exclusion diet. For me, it's about the big picture, rather than worrying about every mouthful. I'll never stick to it if I do.

Do you mind if I ask why you are eating fermented cabbage?
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Date: 19.07.2014
From: Sean

Subject: Re: newspaper article

Jackie - which clinic? Is the the Burghwood?

I love your quip about replacement hips - so funny and so true! You seem to have a very positive outlook. My wife has 4 Brazil nuts each morning for selenium.
My French neighbours husband is German - and makes his own sauerkraut - I'm growing cabbages and hope to make some later in the summer - loads of good bacteria but as you say a bit of an acquired taste :-/
I've stopped taking so many supplements used to take loads but still believe its necessary as eating 20 carrots to get as much vitamin A as we used to from 2 is an issue that we are all facing. I never have supermarket "gluten free" foods (it's mostly junk) - always cook from scratch as well from fresh ingredients. I've become an ok cook over the years - baking cakes with almonds and rice flour. Once in a while i have a mc. Quarter pounder & cheese without the bun - their fries are gluten free.

I used to be nicknamed mr stay puff because of my love of Danish pastries and I remember how much I loved apple filled iced donuts - but I remember the pain more.
One of my biggest steps recently has been halting all painkillers even for a migraine. My wife is dabbling with gluten free to see if she can drop her blood pressure medication - she been very brave.

I've been reading up on paleo diet stuff a lot recently and think my next step will be to eat more good fats - minerals from bone broth, butter from grass fed cows and aim to add liver to my diet for vitamin A.
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Date: 20.07.2014
From: bsk

Subject: Re: newspaper article

Watch taking excess Vitamin A though, Sean. It can be toxic and cause other problems.
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