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Date: 11.11.2013
From: Karen Murphy

Subject: Nothing works

Hi there everyone I have been diagnosed with psoriatic arthritis for 2 years now after birth of my daughter. I have been on steroids, methotrexate, 4 different anti tnf drugs and now sulfasalizine. I am in constant agony as only you guys can appreciate nothing seems to work. Is there anyone out there who has also tried the amount I have and maybe been diagnosed incorrectly? Am looking at other avenues but need help on where to go...... All help is so much appreciated x
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Date: 12.11.2013
From: martyn

Subject: Re: Nothing works

The best I can say is keep trying, ask complain. The hardest thing to admit is that you are not right. Every new drug you try to convince yourself you feel better tgen slowly the pain comes back.
I've suffered for nearly 10 years now.
Been on sulaphasalazine - Took awsy the rough skin on my elbows but not a lot else.
Methotrexate - Was like not sleeping for 24 hours it also made all food taste like greesey chips.
3 types of anti depressant, brighten my mood but didn't help the pain.
Pain killers/anti antiinflamatories.
Celebrex - worked a bit but not much
Diclophenic - Made me forget about the pain because I soent the whole time in the toilet.
I'm now on morphene which does work but makes me very tired.

As to getting better I still hope but waking up at 5 30 feeling as thou you haven't slept at all and like you have spent the last 24 hours digging a garden.
I haven't all I have done is march down the high street with my scouts (I say my scouts they are not really any more I can't go every week now it's too hard :-()

Best advice I can give go back to the doctor and say (again and again if needed)

I originally tried to just beat it on my own.I failed, it killed my marraige, got me depression and took me to the brink of suicide.

And now I know I need to go back to the doctor and ask for something new.
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Date: 12.11.2013
From: Lilly

Subject: Re: Nothing works

Have you looked into antibiotic therapy ? Im on it for my RA and the pain I was in is improving everyday and blood test results are proof its working. Its not a quick fix and like conventional drugs it doesn't work for everyone. If your gp or rheumatologist wont prescribe there are a few clinics in UK that will , but its expensive. You can find more info on the Roadback website.
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Date: 12.11.2013
From: Colin W

Subject: Re: Nothing works

Lilly , sulfasalizine is a antibiotic drug developed in the 50s/60s for RA because at the time they thought RA was caused by a virus , they work well with people with mild RA but that is about all , AP its not used much in the UK because it dont work well compared to MTX & anti-tnf drugs & those of us with severe RA will end up with joint damage without the stronger drugs

Karen , there is other biologics they can try like Remicade not sure if its used on PsA but works well with RA & you need to try more than one anti-tnf to try it , myself been on Enbrel now on Golimumab but they are thinking of changing it to Remicade
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Date: 12.11.2013
From: Lilly

Subject: Re: Nothing works

Hi Colin, Im not on sulfasalazine as that's not the type of drug used in antibiotic therapy, I have been on it in the past but it didn't agree with me. The drug used is Minocin or Doxcycline, Im on Minocin and its working very well for my severe RA. It hasn't been easy as it has taken a while to kick in & the private clinic I attend is not cheap !! But when everything else failed me I was desperate & the cost becomes irrelevant, I don't know why or how it works but it works for me and Im so glad I gave it a go.
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Date: 12.11.2013
From: Colin W

Subject: Re: Nothing works

Lilly I am pleased it has worked for you , I have never been offered if here in the UK but know its common in some other countries , I started RA in 1996 & only drug given was sulfa & been on it since then & Methotrexate since 1998 , leflunomide & hydroxychloroquine are both used here now but not tried them , the other drugs at that time was Gold injections & D-penicillamine which are not used now , but dont know why they dont offer minocycline

rituximab is one of the new biologics & works diferently to anti-tnf drugs by it destroys B cells & if I was Karen would ask to try this drug as some people are having very good results on it
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Date: 12.11.2013
From: Lilly

Subject: Re: Nothing works

Colin I agree with you, Karen should try everything the NHS has to offer. Antibiotic therapy should be a last resort as it only works in 60% of people and its a big and expensive gamble. Some rheumatologists will prescribe minocycline in combined therapy, but mine refused. To be honest I didn't think it would work but as I said I tried most of the conventional drugs & felt I had nothing to lose. Ive been very lucky, I still have the odd twinge now & then but nothing like the pain I had a few years back.
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Date: 12.11.2013
From: karen murphy

Subject: Re: Nothing works

Guys your comments are so much appreciated and helpful. You have given me hope more importantly which I was losing so thank you am off armed with some new drug names and heaps of positivity this condition is the pits I think forums like this are so helpful. Thanks again x
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Date: 12.11.2013
From: marlene

Subject: Re: Nothing works

Good luck Karen!!!!
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Date: 13.11.2013
From: Sean

Subject: Re: Nothing works

Hi Lily

There was a thread on Antibiotic Protocol a few months ago with contributors who are on AP. Linked here

http://www.arthritisforum.org.uk/cgi-bin/showthread.pl?threadid=3588&offset=0%5Dnipples

There are no studies regarding the protocol used today that say it is less effective that other therapies. Even main Uk NHS Arthritis websites admit that research has been limited. They say...
"The limited research that does exist suggests minocycline can provide some benefit for some people with RA, but minocycline has simply not been studied enough in people with RA to provide a full picture of its effectiveness and limitations, how it works, when it should be administered and in what dosages for optimal effects, and for whom it is best suited."
If the success rate really is as high as 60% then perhaps it should be studied more and not be a last resort. I don't think it is expensive either compared to many other "wonder" biologicals that work for a limited time at huge costs for far less than 60% of those who take them.

My view is that for drugs companies to promote research in to this opens them up to all sorts of competition - as it says that autoimmune arthritis can be "caused" by invaders (dietary as well as bacterial) or gut imbalances rather than the incumbent view of "we dont know the cause".
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Date: 13.11.2013
From: Lilly

Subject: Re: Nothing works

Sean, the antibiotics aren't expensive but unless you can find an nhs rheumatologist or gp to prescribe them, then you have to go private. Consultation fees, private prescriptions, travel expenses are not cheap. If needed IV clindamycin infusions, then it can run into thousands of pounds. A lot of people cannot afford this and for a treatment that may not work it is a big gamble, that's why I think it should be saved as a last resort.
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Date: 13.11.2013
From: Linda

Subject: Re: Nothing works

Lilly. One clinic which is not far from where I live, does AP for RA and other autoimmune diseases. It is a private clinic and is very expensive, which is a such a pity because the AP would be quite quite cheap if prescribed and used by the NHS.

My son in law was taking the same antibiotics for ages, for acne. Yet they're reluctant to give them to people with serious illnesses. It's totally nuts.
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Date: 13.11.2013
From: Lilly

Subject: Re: Nothing works

Hi Linda, do you live near Surrey or Hertfordshire? The argument now for not using AP will be that antibiotics are over prescribed and that may well be for coughs , sore throats and acne but it shouldn't be for more serious diseases, it is totally nuts.
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Date: 14.11.2013
From: Linda

Subject: Re: Nothing works

Hertfordshire Lily. I do buy low dose naltrexone on a private prescription, but it does work out quite cheap. Even cheaper if I could get it on the NHS. LDN isn't a cure but it has helped many people with all sorts of autoimmune diseases.

As for antibiotics, in my daughters local surgery, there's a sign up saying, don't ask for antibiotics. They were very reluctant to give them to my daughter before she had her tonsils out. They kept saying she had a viral infection. It was only when she had an allergic reaction to strep, she came out in a horrible rash, that they gave her them.
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Date: 14.11.2013
From: Sean

Subject: Re: Nothing works

I found this a few weeks back in support of the use of LDN - A TV 'Doctor' - has previously been using it himself and tried to convince the Scottish parliment (really interesting link below)

http://www.youtube.com/watch?v=CVpjsDK0LPA

http://archive.scottish.parliament.uk/s3/committees/petitions/petitionsubmissions/sub-09/09-PE1296X.pdf

Suggested saving - "estimate of current savings to the NHS of £105 million per year by the use of LDN rather than other treatments. With the rate of increase of prescription that figure could easily be £1 billion within the decade" (just for Scotland?!)

As you said about AP - totally nuts!

However savings to the NHS costs the drugs companies - not sure exactly how have a feeling that it is Drugs companies that pull the strings!

LDN is another one of those non patentable treatments (a bit like diet changes) that despite 'promising inital trials' cannot be passed as a treatment because no second trials have been done.

And until they are on the Rheumi list of approved treatments - most will still have a quack halo

My high taxes are going to the drugs companies via the NHS and it makes me angry!
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Date: 14.11.2013
From: Lilly

Subject: Re: Nothing works

I had a long conversation with a friend recently about the benefits of LDN, but it got confusing when she kept asking if it was the hallucinogenic properties that were helpful. I then realised I had been referring to it as LSD,a drug probably easier to obtain than antibiotics !!
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Date: 14.11.2013
From: Sean

Subject: Re: Nothing works

That's so Funny!
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Date: 15.11.2013
From: Linda

Subject: Re: Nothing works

LDN in high doses of 50mg is given to addicts on the NHS. In low doses it has been found to beneficial for people with autoimmune diseases. It balances out the immune system. I haven't had a cold since I started taking it, three years ago.

Pharmaceuticals are not interested in it because it is an old drug. Some NHS doctors will prescribe it but others won't.
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Date: 19.11.2013
From: Julie

Subject: Re: Nothing works

Just reading these post about antl-biotics has made me think.
Recently i have been in hospital with septicaemia and pneumonia which caused my ra to be the worse i have ever experienced due to the infection. I was put on iv's of antibiotics and after a couple of days i couldn't believe how my ra completely went it seemed to have disappeared. now i am thinking was it anything to do with the antibiotics i was on.
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Date: 19.11.2013
From: Colin W

Subject: Re: Nothing works

Julie , all antobiotics suppress our immune system , what some of them are claiming is our RA is caused by a virus but that was the thinking 60 years ago we now know that is wrong & drugs like methotrexate is so much more effective suppressing our immune system but nothing is simple with RA & drugs that work for one person dont with others & maybe they should try minocycline a lot more
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Date: 19.11.2013
From: Sean

Subject: Re: Nothing works

Hi Colin

Especially for you - 2012! Not 60 years ago.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3290812/

Microbes form an important part in the disease causations in most immune-mediated rheumatic diseases, such as rheumatic fever, ReA, Lyme disease, RA, AS, and CD. Molecular mimicry is considered as the basic mechanism which leads to the development of these diseases, in genetically susceptible individuals, where the causative microbe triggers formation of antimicrobial antibodies which could bind the crossreactive self-antigens and cause tissue damages via the effects of activated complement system and the cytotoxic products from recruited inflammatory cells.

Personally I would add food protein to the cause also in genetically susceptible individuals.

Julie - your story is very interesting and does have scientific back-up
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Date: 20.11.2013
From: Colin W

Subject: Re: Nothing works

Sean its not me you need to convince but its my Rheumatiod Professor I see several times a year & everyone like him , we are not trained to know what is right & what is total bullshit in any of these reports

sulfasalizine is used to treat crohn's disease & they are given 16 tablets a day compared to the 4 RA suffers are given , there must be someone with both disease & there RA improved if it was increased & the same with other antibiotics used for long terms & if you had RA you will know that some time you do fell better on them but not always

they found out Methotrexate works for RA by accident by people on chemotherapy , there are reports that Gastric Bypass Surgery helps improve RA but not everyone seems to benifit but maybe they did not have the same Gastric opperation , if I could afford weight loss surgery then I maybe interested in trying it but they are happy giving us expensive drugs that dont work well but my Professor will take a lot to be convinced it works
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Date: 20.11.2013
From: Sean

Subject: Re: Nothing works

Colin
Your dead right - and it's not just laymen that need to be educated - many professionals do not keep up with evolving research. As an anecdote - my son (age 14) was in school 2 weeks ago on a teacher inset / training day to give a talk to teachers on a new programming language called "scratch" - that he knows very well - this highly rated school had fallen behind in it methods / training and understanding of a changing world. It was relying on their students to train them.

If you have 15 minutes - I would recommend that you read this remarkable piece of journalism / short ebook.

http://www.thepointmag.com/2012/essays/plea-human-food

He mentions the author of the other article on RA (Ebringer) - a top Kings College arthritis researcher. Ebringers studies and work are largely (Conveniently!) ignored - and to quote the article SAA (official medical industry support in US) Website at one point put a note that "other studies had disproven dietary approaches" - but when challenged by patients "what studies" they removed it. What made them put it there in the first place?

Anyway - It is one of the best pieces I have read on my disease since the birth of the Internet - but truly believe that it is relevant to many other autoimmune diseases. I love the bit about the rise of breakfast cereals..

Best wishes - Sean
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Date: 20.11.2013
From: Lilly

Subject: Re: Nothing works

I believe in maintaining an open mind to everything in life. I gave up trying to convince my rheumatologist to prescribe antibiotics so went and found a doctor who would. Julie if you wish to embark on this treatment, there are quite a few doctors out there that don't need convincing.
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Date: 20.11.2013
From: Linda

Subject: Re: Nothing works

Excellent read Sean.
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Date: 02.04.2014
From: Karen Murphy

Subject: Re: Nothing works

Hi guys I'm back! After speaking to you last I was hospitalised for a while and lo and behold was diagnosed with lupus!!! They believe it is drug induced lupus and the varied anti tnfs and Sulphasalazine caused lupus. Has anyone ever heard or experienced this? I am now taking lupus medication (Plaquenil) and continuing with my latest anti tnf (golimumab). I feel I should write a book ha. X
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Date: 04.04.2014
From: Susan

Subject: Re: Nothing works

Hi Karen. Welcome back! How are you? Drug induced lupus? Never heard of that before. Thought these meds were supposed to help autoimmune diseases not cause them!!
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