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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Hello Went to my new hospital today 2nd appointment and thankfully I wasnt as stressed as last time. Signs of remission, though also signs indicate I have an aggressive form so told to stay positive. Hydroxy seems to be working. Now going to try and wean off steriods. Doc says I will probably need a top up of sulpahazine. Feel happier that I have moved so some of stress about my care is lifted also hospital has a policy of copying me into correspondence so that helps by making me feel included and taken seriously. Also part of a research into early arteritis, where they are monintoring progress and join erosions. My last appointment was today and I have no signs of damage. So good news. Consultant considers my back problems are degenerative discs and not part of RA and suggested pilates. So all i have to do now is be positve, do excercises  and try and control my stress levels.  
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Sounds great, Mari, I am glad for you!
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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thanks Amanda, I just find going to the hospital so stressful and its signs not complete remission. and its a bit worrying that I have an aggressive form. I just wanted to post something positive for a change.
Mari
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I know it's very easy for me to say, Mari, but I worried for months after being told I had an aggressive form of RA and yet, 4 years later, I am no worse than I was then. In fact, in lots of ways I m better. OK, so I have flares from time to time, but who doesn't with this wretched disease?
Glad you are feeling much more positive and were happier with your second consultation.
Keep going, girl!
Love
Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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 Hi sounds very postive,sorry to see youve been told agressive hugs take care lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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thanks jean your post hit the spot. Its helpful to hear from someone in a similar position. Hope it keeps that way. thanks mel fingers crossed that you get a properly diagnosed soon. Love to you both Mari xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Mari,
Glad it went better for you this time.
Hope you continue to improve.
Love Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Mari Good to hear you have come away with such a positive response. Although 'they' mention 'aggressive', like Jean, I too was told the same but mine is controlled fairly well. Sometimes professionals have a tendency to use terms which aren't necessarily the most appropriate or helpful. Very stressful . Take care Lyn
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Couldn't agree more, Lyn! Will be e-mailing tomorrow - off to granddaughters 2nd birthday party today!!
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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I'm glad you had such a positive appt, and you're in remission.
Lyn
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Mari,
Pleased to hear that despite being told that you have aggressive RA you had a positive appointment today. I think your stress levels will improve gradually when you are off the steroids as they do tend to affect the way we manage our stress levels. I noticed this last year when I was working and when on steroids, and could not cope with stressful situations in the way I was previously able to do.
Moving is considered to be one of the most stressful life events; first comes bereavement, then divorce, and moving third!
Pilates is great for the back, but watch out for your wrists they tend to take a lot of strain, particularly with floor exercises requiring you to support yourself on all fours.
Love,
Barbara
XXXXXX
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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I agree with the terms the Dr's use ..they can be very ambiguous and one needs to be quite vigilant when comprehending them.
If we know RA is an unpredictable disease then how can someone predict it is aggressive or not? I would just take it day by day, week by week. Thankfully it seems quite well controlled presently and this is great..
Much love,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I have always wondered this, Amanda. How on earth do they know whether our disease is aggressive or not when it can change from month to month 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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i never know for sure but do know it is criteria for getting the drug access the consultants want.
if your esr and crp are up, RF up and anti ccp positive plus multiple joint and other area involvement that is often the trigger.
Jenni xhow to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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yes Jenni I believe its cos I am rf poisitve plus very high CCP. I think these numbers dont fluctuate much as teh esr and crp but not 100%. However it is possible to have these indicators but can get lucky... Gosh i feel like clint eastwood if you know what i mean. my bloods crp and esr are never that high, so maybe thats what makes me lucky..... i dont know how I will handle it if it does get worse..... but not thinking that way.... funnily enough my blood type is B positive
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Rank: Advanced Member
Groups: Registered
Joined: 1/14/2010
Posts: 118
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Well that all sounds good and positive. Hope that you carry on being so positive it can do wonders Love Melanie
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Glad you're not thinking about the future, Mari. You could put yourself through a lot of stress and it's highly likely that the RA won't advance at all. Please take care - we're all here for you.
Lots of love
Jeanxxxx
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