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Date: 08.09.2013
From: PAT

Subject: Just be told have RA not convinced or in denial

Just been told I have RA. Have had knee ankle pain. Also shooting pain from wrist,and pain around elbows. Doctor did a test specfic to RA antibodies were very high over 300. He wants to start me on treatment right away but dont really want to take med until really have to. Can cope with the pain at this time. Is this the early stages of RA
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Date: 08.09.2013
From: Colin W

Subject: Re: Just be told have RA not convinced or in denial

hi Pat

look up Rheumatiod Factor , that is the blood test he is talking about , it dont mean you have RA but if you have the other symptoms then there is a good chance

I started by just one knuckle being hot & red but RA can develop to most joints & without the drugs you can end up with a lot of joint damage

below are some links & include free helplines in the UK if you need advice

http://www.nras.org.uk/
http://arthritiscareforum.org.uk/
http://www.arthritiscare.org.uk/Home
http://www.arthritisresearchuk.org/
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Date: 08.09.2013
From: Pat

Subject: Re: Just be told have RA not convinced or in denial

Thank will have a look at the sites
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Date: 10.09.2013
From: Eve

Subject: Re: Just be told have RA not convinced or in denial

It is quite common for early treatment to be given in an aggressive approach to try and catch it at an early stage and to try and prevent things getting worse, joints being damaged etc...

Have a good chat with your doctor who can take you through the options and pros and cons so that you can make a more informed decision.
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Date: 10.09.2013
From: Helen

Subject: Re: Just be told have RA not convinced or in denial

Are you frightened of taking the drugs or the disease itself ?
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Date: 16.09.2013
From: PATRICIA MCNEILL

Subject: Re: Just be told have RA not convinced or in denial

No not afraid, just iam not one for taking medication unless i really have to. I have read about how much pain some people have with RA. My pain is not to bad and I don,t have any swelling. My Doctor give me a steroid injection and i felt great. I got a second injection but it didnt seem to have the same affect as the first one, I really dont know where I am at this time just a bit confused.
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Date: 17.09.2013
From: Colin W

Subject: Re: Just be told have RA not convinced or in denial

hi Patricia

think we are all the same about not taking meds when we dont need to , we are all different as to what works I dont take any pain killers but pretty much alone there but having RA for 18 years have got used to it

long term steriods are not the answer because of the long term side effects so most of us are on Disease-modifying antirheumatic drugs (DMARDs) , when I first had RA I used to see alot of people with deformed hands because of RA , fingers pointing side ways but now because of DMARD's like methotrexate you wont see many suffering & there are some realy good new drugs coming through which should change the lifes of people with RA but you need to look after your joints until it happens because when you have damaged joints there is not much they can do apart from fuse or replace them
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Date: 21.09.2013
From: PAT

Subject: Re: Just be told have RA not convinced or in denial

thanks again going to see the nurse this week for some blood tests will have a chat with her.
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Date: 22.09.2013
From: willis

Subject: Re: Just be told have RA not convinced or in denial

Hi Pat
I can only agree with Colin on the medication helping
I was only diagnosed 2.5 years ago having suffered for years not realising it was RA I had.
I know I would be one of the deformed hands brigade and unable to do anything without the DMARDS and the others I am on
I am so glad that the medications you can take have advanced as much as they have or I would have no quality of life.
I hope the nurse is able to give you some answers you need.
Colin how are you? Doing well I hope x
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Date: 29.09.2013
From: Pat

Subject: Re: Just be told have RA not convinced or in denial

Thanks for all your comments starting meds tomorrow so hopefully all will go well.
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Date: 29.09.2013
From: Pat

Subject: Re: Just be told have RA not convinced or in denial

Hi again was just thinking, I am seem having bouts of sweats, hot flushes type symptoms would this be normal for ra suffers.
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Date: 30.09.2013
From: Sean

Subject: Re: Just be told have RA not convinced or in denial

Hi Pat there are quite a few things that link together - low progesterone is a hormone imbalance that causes hot flashes and is also implicated if immune regulation - this is that low progesterone level prevent the body from developing tolerance to self. I saw this research articles last week where a professor in US is developing treatment based on this. This also explains remission in pregnancy and onset of arthritis following child birth (which happened to my friend recently)

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

Our western diets are also very estrogen heavy which can suppress progesterone - fat cells also create estrogen hence the obesity link for some.

3 x as many RA sufferers are Women than Men.

Different types of arthritis have also been linked to infection as an onset - with fever symptoms - examples are rheumatic fever leading to Psoratic Arthritis and various gut bacteria causing Reiters Syndrome - reactive arthritis leading to long term symptoms like my own Ankylosing Spondylitis.

Hope you get some relief soon!
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Date: 30.09.2013
From: bsk

Subject: Re: Just be told have RA not convinced or in denial

I'm also interested in the low progesterone connection. I used to take progesterone for severe PMS in my 40's and think it no coincidence I got RA a decade later.
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Date: 30.09.2013
From: Sean

Subject: Re: Just be told have RA not convinced or in denial

Hi bsk

Whats been interesting me recently is why some people (without autoimmune) develop tolerence to self and when an antigen - either protein from a food or bacteria get deaminated or citrullinated they provoke an immune responde that results in 'dodgy' T-Cells. Which is where I saw the progesterone link and then also saw a lot on zinc regulating T-Cell activity to 'invaders' and 'self'.

Just sharing a link that I saw yesterday - this chap seems to know more than most and explains it so well - lots of good articles on this site

http://raypeat.com/articles/articles/progesterone-summaries.shtml
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Date: 30.09.2013
From: Colin W

Subject: Re: Just be told have RA not convinced or in denial

Hi Pat
its a common symptoms of rheumatoid arthritis
: flu-like symptoms, such as feeling generally ill, feeling hot and sweating.

copied from the arthritis research website , bit of warning , be very careful what you read , there is a lot of bad information on the web & even on here , anyone mention a cure or knowing what causes RA just dismiss as lies/bad information , the experts will tell they dont know what causes it , you need to build a good understanding with your rheumatology Department because you will be under them for a long time & ask questions from them , hope you feel better soon

http://www.arthritisresearchuk.org/arthritis-information/conditions/rheumatoid-arthritis/symptoms.aspx#sthash.AqNpa74S.dpuf
http://www.arthritisresearchuk.org/arthritis-information/conditions/rheumatoid-arthritis/symptoms.aspx
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Date: 30.09.2013
From: Sean

Subject: Re: Just be told have RA not convinced or in denial

Hi Colin

Thats good research - Thanks!

The issue we have is that RA and other forms or athritis are diseases with "no known cause" treated by drugs that do not always have an explained action that mostly were discovered by accident when treating other diseases.

This unknown label allow drug companies to prevail and continue to supress some of the information that it out there (whilst at the same time buying up alternative remedy and dietry supplement companies!). I have no doubt that Arthritis Research UK want safer cheaper drugs - but I doubt if drugs companies want cheaper drugs.

There is a lot that 'experts' do not understand about arthritis - but just because they dont fully understand doesn't mean we should listen to the main "WE DONT WHAT CAUSES IT" message.

There are a lot of clues and direction all documented in good 'non quack' research as to why some auto-immune diseases start and can be helped. Just because a rheumatologist doesnt have that in there list of treatments doesnt make it bad information.

I once told a GP (whose son had developed AS) that my AS had improved greatly on my diet and she flatly refused to believe me. If these 'experts' want to remain ignorant and believe that medicine can only be drugs - then so be it.

At least 25% of RA sufferers would be improved on a changed strict diet - but because the powers that be can't fully exaplain it or be bothered to test it they dont promote it.

But it appears ok to give drugs that work in ways that cannot be explained.

It appears you want this forum to be - "i'm on this drug" and 'don't worry they'll find a better drug' - leading to "we've all beeen through it" and "it'll be better tomorrow". All positive in it's own way... but....
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Date: 01.10.2013
From: Pat

Subject: Re: Just be told have RA not convinced or in denial

Thanks for all your comments, will let you know how Iam getting on just started my meds so hopefully will feel better soon.
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Date: 02.10.2013
From: ?

Subject: Re: Just be told have RA not convinced or in denial

I agree Sean,on this site ,if you happen to step out of the box & mention anything other than the use of conventional drugs you are shot down. I find it a very blinkered & sheep like attitude. Only the other day in the press it stated methotrexate is to be prescribed for osteoarthritis, why? Is it somehow needed to supress an immune system attacking infection? Diet, massive impact on autoimmune diseases, if not then why do gastroenterologists treat coeliac disease. Until a cure is found no one can be deemed as an "expert" and no unexplored avenue dismissed.
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Date: 02.10.2013
From: marlene

Subject: Re: Just be told have RA not convinced or in denial

Can I ask why you feel it necessary to hide your name.
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Date: 02.10.2013
From: Sean

Subject: Re: Just be told have RA not convinced or in denial

? - I would not tar everyone with the same brush - even people that are sceptical have their reasons for being so.

Also I find it is better not to get personal or be critical of people - I will just give my view and some back up info. I have had a long held view that early onset osteoarthritis (before age of 50) is related to autoimmune rather than simply joint wear and tear. The processes that forms new bone constantly cycles and loses bone and forms new bone - is affected by autoimmune without any noticeable inflammation - 75% of those with celiac have osteopenia or osteoporosis.Then there is also the hormone link with osteoarthritis - where bone loss can be caused by imbalance - again diet impact hormone balance.

Btw - best if you drop the ? and use a name
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Date: 02.10.2013
From: marlene

Subject: Re: Just be told have RA not convinced or in denial

Hi Sean, It is refreshing that you do not take any thing personal and understand that as adults we all have our own views on everything.
I have been critical of some of your posts but I have also said how well read you are on the subject that is close to you. (diet)
I have never past a comment without posting my name and why would I after all these posts are just our opinions not the LAW.

Sean I hope you are well and have a good day!!
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Date: 02.10.2013
From: Maz

Subject: Re: Just be told have RA not convinced or in denial

Osteo arthritis is only, as I understand it by experts in the field, wear and tear not to be confused with Rheumatoid arthritis. So why anyone would suggest you take RA meds for OA is beyond me.

Just to clarify before someone asks, yes I have OA I have had OA for about 18 yrs; my RA developed they think from PA which I contracted in Jan 2008 after a severe infection.

Arthritis & RA is just a term used for a whole list of symptoms for conditions no one truly knows about, ie they don't know how you get it & really don't know how to treat it & hope their methods help the symptoms of their patients.

I don't have any problem with doctors/specialists floundering with this issue because until they find out what causes RA they won't be able to start finding a cure for it.

The only thing I am in control of is how I treat my disease/s WITH the help & assistance of my health professionals.

I hope that someone will pick up the ball & start researching arthritis so others can start trying to find a cause & eventually a cure.
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Date: 02.10.2013
From: sean

Subject: Re: Just be told have RA not convinced or in denial

Hi Marlene - my response was to ? (whoever that is)

I think we must have psoted at the same time :)
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Date: 02.10.2013
From: ?

Subject: Re: Just be told have RA not convinced or in denial

I don't see what difference it makes if I use a name or not. If it makes you more comfortable I will call myself Fred. Maz in response to your post, on the front page of Mondays Daily Express the headline was that doctors are testing methotrexate on osteoarthritis patients.
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Date: 02.10.2013
From: marlene

Subject: Re: Just be told have RA not convinced or in denial

hi Sean, I knew who you were responding to ? he/she has posted negatively before. What people don't understand like you many of us have been on here for a long time and all have different views and just as well other wise none of us would learn a thing about all the different arthritis and diets and meds.
Oh yes and not forgetting all the ones who try to sell us the cures!!!
Sean nice to chat with you take care.
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Date: 03.10.2013
From: Maz

Subject: Re: Just be told have RA not convinced or in denial

I agree Marlene !!!
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Date: 03.10.2013
From: marlene

Subject: Re: Just be told have RA not convinced or in denial

Hi ? Fred or whatever your name maybe. I think it is better to put a name as No1 It is friendlier
No2 people are more likely to respond No3 when your posts are negative people will think you are only being rude!!
No4 why wouldn't you want to??????
No5 It seems I am not the only one who finds it uncomfortable posting to a question mark.
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Date: 03.10.2013
From: Colin W

Subject: Re: Just be told have RA not convinced or in denial

marlene just ignore to trolls , Pat hope you are ok starting your new meds , maybe start a new thread to let us know how you are getting on
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Date: 03.10.2013
From: marlene

Subject: Re: Just be told have RA not convinced or in denial

Colin you are right better to ignore. I just need the person to understand we have a good forum here and we can do without ignorance as we all have enough to deal with.
I hope you are keeping well!! Take care.
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Date: 14.03.2015
From: Gary

Subject: Re: Just be told have RA not convinced or in denial

Pat be aware the EARLIER You start treatment the LESS damage to your joints will occur in the future, its not just about pain relief.
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