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Date: 06.08.2013
From: Suz

Subject: DO drugs work?

Hi Everyone

I just thought id post this thread to ask if DRUGS for our R.A really work, I mean how many are on drugs that work so much so that we can lead a normal life or can life never be completely normal with R.A. When a drug does work on a certain degree the side effects of it counter effect the benefits and for me it just makes the whole thing worse.

Does our Immune system really need that much suppressing or is there a hidden cause for this R.A. I was just thinking about it when they measure our blood for ESR / CRP when these 2 are at high levels and with joint inflammation we classed as having sero positive or sero negative R.A but doesn't these 2 markers also go up when we have a infection in the body so how do our consultants know by just suppressing the immune system the R.A will be controlled. My concern is and I don't know about anyone else suffering from this disease is why the immune system reacts like this to our joints, why do joints look hot and swollen and then get attacked, you guys might say I should ask my Rheumatologist about this but I just don't feel the answer to it with be sufficient for me to understand as they say its AUTOIMMUNE but causes autoimmune??

I just wondered if all R.A sufferers could do a protest or demonstration or something to make the rheumatologist and the drug companies aware of this as they don't really pay attention to a single individual.

Here I am just hoping and wishing for some better relief.

Take care everyone and whoever reads this sorry for it being long.
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Date: 06.08.2013
From: rhona

Subject: Re: DO drugs work?

Hi Suz,

I think their is a lot of trial and error with drugs as some work for some and not others and sometimes they stop working and we need something else and then there is the side effects. I don't know for sure what causes R/A some seem to think it could be an infection that sets it off and others say stress. I think genetics also play a part in it and when something happens whether it's an infection, a traumatic event or whatever it seems to switch the gene on that causes R/A.

It is true that the ESR and CRP can rise when a person has an infection or cancer etc but if you have sore joints and other symtoms of r/a then I think you would know it wasn't an infection causing it to rise.

As to why the joints get hot and swollen when they are attacked is probably similar to why our throat would get red and sore when it is attacked with a germ that causes an infection. Inflammation around a wound can be helpful in protecting it from more damage and I guess when it's in our joints its because our body thinks it's getting attacked with something and tries to protect it but in actual fact it is attacking it. I don't quite understand it all either and why our bodies would think that. Perhaps someone could explain it better.

I know the drug I am on just now (rituximab) has helped me a great deal but for how long and whether there will be side effects I will just have to wait and see.

It is horrible when you are in pain Suz and I do hope you feel better soon and get something to help. What are you on just now?
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Date: 06.08.2013
From: Colin W

Subject: Re: DO drugs work?

NRAS Freephone Helpline - 0800 298 7650 if you need advice

Arthritis Care, empowering people with arthritis. Call our FREE confidential helpline 0808 8004050

these are both free helplines for people who need advice but I always use my Rheumy nurse if need anything as she can arrange everything

Rhona put great post & we all struggle at times with RA & takes time to get the right combinations of drugs that will stop the joint damage & let us live some kind of normal life . if your CRP & ESR is high then your RA is not under control & need to see your consultant

had RA a long time now & maybe got just as long to look forward to it
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Date: 07.08.2013
From: Suz

Subject: Re: DO drugs work?

Thanks for both your replies.

Rhona your making some good points and it makes sense and I do understand what your saying, but I still don't understand why our joints are being attacked and Rheumatologist don't really give a good enough answer to that.

Thanks for number colin, drugs and drugs and combination of them for life is scary... :-(
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Date: 07.08.2013
From: Linda

Subject: Re: DO drugs work?

I would read, "The New Arthritis Breakthrough" by Dr Thomas Mcpherson Brown Suz. It perfectly explains the infection theory that cause most forms of arthritis.

He never believed in autoimmunity and described arthritis drugs as a sledgehammer to crack a nut. He treated people with RA and other AI diseases with low dose antibiotics, These are the same class of antibiotics that are given to teenagers with acne.
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Date: 09.08.2013
From: Suz

Subject: Re: DO drugs work?

Thank you for that information Linda, I have read the book and his theory sounds soo convincing and when I was reading the book I thought ' oh my god ' there is hope for this disease and something can be done to get free from this illness. When I told my CONSULTANT he wasn't too convinced but wanted to understand my view and prescribed me one of the antibiotics listed in that book but he said he wouldn't carry on prescribing them to me as this was not the usual treatment for R.A. Being on it for week I did not feel obvious benefits and without the support from my consultant I didn't carry on with it.
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Date: 09.08.2013
From: Colin W

Subject: Re: DO drugs work?

Dr Thomas Mcpherson Brown died in 1989 & if this was a good treatment for RA we would all be on them now , since his death there is so much realy interesting research into RA & the treatment of it & giving us all hope that there will be new treatments that are effective

dont want to run him down as in his prime there was so little knowlege of RA & pretty much no treatment
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Date: 10.08.2013
From: Linda

Subject: Re: DO drugs work?

Would it surprise you to know Colin, that the famous American actress, Kathleen Turner who has RA, takes Minocycline an antibiotic and Celebrex to combat her illness.

I presume that she can afford the very best health advice and treatment that money can buy. It is much harder in the UK, to get antibiotic therapy.
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Date: 10.08.2013
From: Colin W

Subject: Re: DO drugs work?

Linda , I knew she had RA , but got no idea what treatment anyone has , Celebrex is a NSAID , & Minicycline is recognized as a DMARDS by the American College of Rheumatology,

only thing would be to think she has it pretty mild , there are few other well known people with it Jos Mara Olazbal the golfer & seen James Coburn when he was alive & knew from looking at his hand he had RA , when I first hand RA this was very common but because of the new drugs in the last twenty years you dont see it now
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Date: 10.08.2013
From: Suz

Subject: Re: DO drugs work?

I have read about Kathleen turner, she was quite badly affected on a article it mentioned she was soo bad that she couldn't walk or turn her head and could have been in a wheelchair, She also went to remission and starred in FRIENDS series acting as Chandlers father lol. So something had definitely helped her.
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Date: 11.08.2013
From: Linda

Subject: Re: DO drugs work?

She had a very aggressive form of RA Suz.

I didn't know what sort of drug Celebrex was Colin, but Minocycline is an antibiotic. It is also thought to have an anti-inflammatory effect. It does so I've read take a long time to work.
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Date: 11.08.2013
From: Sean

Subject: Re: DO drugs work?

Hi Suz - following this thread -Minocycline is mentioned a lot on the Roadback.org website which is a non profit organisation in the US - it is suggested as used alongside methotrexate - but they say up to 1 year to work

http://www.roadback.org/index.cfm?fuseaction=education.display&display_id=117

But as you say infection of some kind is known to play a role in almost all arthritis - the trouble is it is not infection as such as the bugs that they are investigating as the immune trigger are normal residents of our bodies.

Beyond this there are a few factors -

1) intestinal permeability

The variability in this area is why we flare and can be stable at other times. Other food proteins can also get through a abnormally leaky gut

2) immune responses and balance

There is the innate immune system that acts in our intestine and the adaptive immune system that acts once the intestine is breached. If a protein (bacterial or food) breaches the gut lining the immune stem generates an immediate reaction and then trains up b-cells to fight the same thing if it pops up again in the body.

Which is exactly your question - is the immune system over reactive or actually weak? - to my mind it is weak as the Thymus is where the immune system "trains" antibodies to recognise the difference between the baddies (invading protein) and our own tissue. It is not over active - it is malfunctioning or unable to train a focused response to the invader.

Drugs companies and researches do understand this and it is there in dozens of medical papers - but they cannot agree on which proteins and bacteria - it is easier to switch off the immune system.

Alternatively you can attempt to prevent leakage / triggers by making the gut less permeable (which is why I believe I am mostly better)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856434/

Then importantly - regardless of celiac gluten opens the gut to allow in the bacteria

http://www.ncbi.nlm.nih.gov/m/pubmed/16635908/

Arthritis is not the body attacking itself for no reason - it is the body attacking something that would not normally get in.
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Date: 11.08.2013
From: Colin W

Subject: Re: DO drugs work?

Linda , there is no way she had a aggressive form of RA , its like making fun of those of us that suffer & end up under surgeons knife within a couple of years

to ignore your problems & hope it goes away will leave you crippled up as when your joints are damage there is only options to have your joints fused or replaced but everyone is free to make thier own choices but to advise people to do the same is realy bad idea
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Date: 13.08.2013
From: Linda

Subject: Re: DO drugs work?

Actually Colin that's what I read. As for Antibiotic therapy, it's nigh on impossible to get it in the UK anyway and no one is suggesting that anyone gives up the drugs.

I would agree with Sean, intestinal permeability may let in the bacteria that causes an autoimmune response. That's what I believe. Obviously you have to be genetically susceptible as I certainly am.
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Date: 13.08.2013
From: Suz

Subject: Re: DO drugs work?

Aw thanks for that information Sean and Linda. I do agree with you both. Wish our consultants would look at all areas of this disease rather than just dam;pening the immune system. That's why I was thinking about a protest but I don't think much will join me..lol.

Ah well only God help us through this.

Take care everyone.
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Date: 13.08.2013
From: marlene

Subject: Re: DO drugs work?

Don't always believe what you read. There is a lot of wrong information out there.
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Date: 13.08.2013
From: bsk

Subject: Re: DO drugs work?

Colin is right, minocycline is regarded as a disease modifying drug as it suppresses the immune system, not because it is killing 'bacteria that cause RA.' It doesn't come without side effects. It may be this drug helps Kathleen Turner. As we all know, we respond differently to drugs so what is good for one person isn't necessarily going to work for another.
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Date: 14.08.2013
From: Sean

Subject: Re: DO drugs work?

How many have tried / used minocycline in the UK?

I read that it is cheap and out of patent - no companies make much money if it is used.

I read up on Kathleen Turner - and don't think it could have been that mild with two titanium knee replacements and she did take stronger drugs that didnt work for her and didnt stop her need for surgery.

There's a lot of discussion on international threads over celebrity endorsements and although some of Kathleen Turners apparent remission she was purported to be Antibiotic Therapy she is or was in the pay of Enbrel.

I have been liasing with a researcher via email who has sent me recent research on bacterial links to arthritis.

I agree some people like me :-) might put 2 and 2 together and get 4.5 - but others are registering 0 - I try to align my own experience of severe pain, feeling better then slightly worse then quite a lot better again (without drugs) with the research that is out there.

don't believe all you read - be discerning and sceptical - the two links I posted are not some dumb links to wacky therapy they are just information. And I would suggest it is information and knowledge that standard medical practice is partly ignoring as it would lead to less profit for pharmaceutical companies.

If anyone saw the programme called "the men that made us fat" the other day and the demonising of animal fat in order to retain sugars in foods and the use of glucose fructose syrup - you will see that big business cares more about profits than our health.

Incidently James Coburn apparently used a substance called MSM (sulphur) which again disrupts bacterial growth and adherence to the gut.
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Date: 15.08.2013
From: marlene

Subject: Re: DO drugs work?

Just where would we be with out Pharmaceutical Companies??
Why do you take everything so personal off course your links were just for information and I have said before how well read you are. So don't believe everything you read is a statement that I believe not a personal attack on you and if you though it was then I apologise.

Take care
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Date: 15.08.2013
From: Linda

Subject: Re: DO drugs work?

I have also read that Kathleen Turner has had joint replacements Sean and that James Coburn used MSM. Correct me if I'm wrong, but I'm sure he said it cured his RA. I tried MSM, but I stopped taking it because I had a really bad flare, so I've no idea whether or not it would have worked.

I don't think pharmaceuticals conspire to make us ill Marlene. I think it comes down to profit. There's no profit in curing people. I remember an Australian doctor who said stomach ulcers were caused by bacteria. It took years for him to convince the medical community, and he only did by infecting himself. I have him to thank for my husbands complete recovery.
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Date: 15.08.2013
From: Suz

Subject: Re: DO drugs work?

Sean I totally agree with your information, ever since I was diagnosed I had feeling my gut was involved in vicious cycle of R.A.

Thank you for your support on this thread.
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Date: 15.08.2013
From: Colin W

Subject: Re: DO drugs work?

Sean well done curing all people with Rheumatiod Arthritis , going to stop all my meds now & do as you say , would write to the Daily Express , they seem to like printing cures for Arthitis several times a month

thankyou one nearly cured Colin
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Date: 16.08.2013
From: bsk

Subject: Re: DO drugs work?

Linda, we all know that medical science hasn't got all the answers and the heliocobacter is a classic example of that. However, I don't think that had much to do with the pharmaceutical companies and more to the medical community as you say. It was a wonderful discovery for many people.

Although the anti tnfs are now out of bounds for me and have caused problems, for a lot of people they have changed their lives. Allowing them to avoid joint deformity and disability. I agree they are not the answer for everyone and not all patients get them. Everyone is started on Methotrexate which is out of patent and very, very cheap which doesn't give much in the way of profit for the drug companies and works for many people.

A lot of research is driven by the medical community. My new consultant is heavily involved in cutting edge research but there is also quite a lot of research on more simple things.

I have no idea whether my gut is involved in my arthritis. I'm not saying it isn't, I am saying I don't know. Arthritis Research is recruiting for lay people to go on their panel to help decide which research gets funding. It would be good if someone like yourself put yourself forward for that.
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Date: 16.08.2013
From: marlene

Subject: Re: DO drugs work?

I don't think drug companies conspire to make us ill either!!!!!!!
I just said where would we b e without them.
I have had surgeries and without these companies I may have had to bite on a piece of wood rather than going to slep and waking up pain free due to the drug companies.

I am always sceptical to anything I read. Sorry guys just me!!!!
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Date: 16.08.2013
From: Linda

Subject: Re: DO drugs work?

I wouldn't disagree with anything you said bsk.

Marlene. My mother had osteoarthritis as well as RA, and she was on morphine type drugs to combat the pain. The last ten years of her life, I believe were extremely painful.

I'm also sceptical about what I read, but some things are more believable and logical than others.
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Date: 16.08.2013
From: marlene

Subject: Re: DO drugs work?

Hi Linda, I agree some things are more believable but after spending so much money chasing a cure I am now happy to let my GP decide with my input what is best for me.
Take care.
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Date: 18.08.2013
From: Fran

Subject: Re: DO drugs work?

Its not impossible to get AP therapy in the UK.
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