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Rank: Advanced Member
Groups: Registered
Joined: 12/21/2009
Posts: 106
Location: cornwall
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hi all
i've been away for a while
new Rheumy consultant--old one dropped his list
new head new way forward
have FINALLY got conformation i have RA!!!!!
taken over 2 years--is that unusual
not sure how ifeel at the moment
i will start on sulphalazine beginning of may--not befor e as i have a weeks hols --and don't want to mess it up
silly question how have others got on with it?
already on hydroxychloroquinine/naproxen/co codamol/omeprozole
and a strange question for long term ra'sufferers can you have ra without severe pain it may seem strange but as usual certain older members family say no need for all this medication all you need is paracetamol!!!!!!!! ha ha they have had ra for years and never needed these meds!!!!!!!
i promise i will be here more often from now on
love caz xxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Carol,
Welcome back.
Glad you got a definite diagnosis at last (although sorry you have RA), at least you know where you stand now., and no, from what I hear it's not unusual to take so long to diagnose.
It will take you some time to come to terms with it, that's why you are not sure how you feel at the moment.
When the "well meaning folk" tell you you don't need the strong meds just remind them that you have RA not osteo and tell them it is a systemic disease that affects the whole body and if left untreated will destroy your joints.
You will come across a lot of people who will tell you they have "a bit of that in their knee" or "they had that and got over it" and even which diets will cure it! They all talk rubbish!
No-one really understands this disease unless they have it so keep posting and you will get lots of support and at least on here we all know exactly what you are going through.
Good luck with the sulphasalazine. I couldn't tolerate it but a lot of people find it very effective.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Hi Caz,
I hope you find the SLZ tolerable- they are very good used in combination with other DMARDs.
When people make comments about RA like the ones you have listed, they do not really understand what the disease is. It is completely unlike Osteo (other than it's title and stiffness of joints) and one wouldn't just takepain relief for an auto-immune illness which is systemic and attack all different parts of the body not just the joints.
Sadly, no natural method will cure the illness, there is no cure. But natural remedies like some herbs, diets, oils can assist one's well being and calmness towards the disease itself.
Love,
Amanda
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Rank: Advanced Member
Groups: Registered
Joined: 12/21/2009
Posts: 106
Location: cornwall
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hi guys
thankyou for your support and comments---it is just that when a comment like that comes from immediate family it rankles a bit!!!!! but when they are elderly you have to bite your tongue which the way i'm feeling at the moment is really difficult.
i will keep you informed re the SLZ but also will try and log on at least every couple of days just to 'talk' to you all
many thakns
caz xxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Caz Good to see you posting but sorry to hear that you have finally been diagnosed with RA. I agree with Doreen and Amanda and it will take time for the reality to hit home. Once treatment kicks in you should be able to look forward to some relatively pain free days! RA is very misunderstood and once the word 'arthritis' is used we are open to all manner of criticism etc., unfortunately it comes with the territory. None of my family have the foggiest idea about RA despite my attempts at explaining but it's not worth getting upset over (although I do at times!). Hope the proposed treatment goes well and you get positive results. Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 12/21/2009
Posts: 106
Location: cornwall
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hi lynn
i think i was more cross tahn anything
caz xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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One of our pet hates on the forum is the public perception of just what RA is and the damage it can do if not medicated properly. As Lyn says, not only the general public but 'well meaning' family and friends have strong opinions too! I wonder if they had to tolerate what we do would they just take over the counter meds or would they accept the advice of a consultant, backed up with the proof of blood tests and x rays? I know what I have done as have the majority of members on the forum who prefer quality of life to any other.
best of luck!
Eleanor x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Caz
Thanks goodnessyou have a diagnosis - although not one you welcome, I'm sure.
However, sulfa. is one of the tried and tested drugs and so many people do brilliantly on it. I really hope this will be the case for you too.
If all else fails, as Jenni is always telling us - she knows someone who was cured with gnat's pee - I'm sure she would let you have some!
Take care
Love Jeanxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Caz - sorry to hear the RA is confirmed but now you know what you are dealing with and can head in the direction of finding the right drug combination for you.
I know exactly what you mean about the comments you get - especially from family - who are supposed to listen to you :) If anyone tells you they have RA in their toe or their little finger that sometimes give them a bit of jip - tell them in your most sincere voice that they should seek a second opinion! That was the politest thing I could think of.
Julie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hello Carol f wishing you all best,not easy first few months diagnois good your on here makes all difference understanding support from fellow ra'ers. good your onto medication now thats not over counter,sorry see comments like that do tend cut where dont like feeling of them but we ones suffering we know need more than what relatives take,hugs. keep posting how your getting on. lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member
Groups: Registered
Joined: 12/8/2009
Posts: 35
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Hi Carol, pleased you have an answer (even though it is not one you would choose) and hope the SLZ works well for you - it does for many (for me it didn;t but there are plenty of options out there and it is all about finding the meds that suit you). Good luck getting settled down into your drugs regime and as for those comments unfortunatley it never gets better and never gets easier to hear but every one of the forum can empathise - we have all heard it. My fathers was rubbing his thumb the other day complaining of a "touch of the rheumatics", it just left me feeling it belittles what RA really is. All the best, Jo 
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Carol
Following on from Jo s posting yesterday, since I was diagnosed it is like a competition with my dad and his knees ! He is 89, has osteo, and doesn t suffer from dementia he hardly takes any painkillers and advice ! it does make me mad, but I just keep my thoughts to myself now. My mum had RA so you would think he would have a little more understanding.
Take care, love Julia x
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Rank: Advanced Member
Groups: Registered
Joined: 12/21/2009
Posts: 106
Location: cornwall
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Thanks guys for yoy comments
i've had no more 'comments' from the family
taking each day as it comes
on hols next week before i start the SLZ
going to the peak district for a week do some short walks--visit chatsworth house-- and mabe family---my dad's side --who are a totally different kettle of fish form hubbies family --- have'nt seen them for sometime so will be good to catch up with them
will take each day as it comes ----- s0me one suggested snow!!!! was forcast
work isn't helping either--my line manager seems to 'forget' i am unable to work a full day and frequently requests overtime!!! i refuse bu am made to feel very guilty i don't know how she does it some how it's just her manner arghhhhh
i will post again after hols
hopefully refreshed and ready to tackle 'arthur' head on
take care all of you and once again thank you!!!!!!!!
caz xxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Have a great holiday! We love the Peak District and meet Doreen and Ian (Dorat84) sometimes for lunch at a pub just outside Glossop! Chatsworth House is one of my fav. places of all time - I love it there!
Take care
Much love
Jeanxxxxx
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Caz
Have a lovely holiday, I think for people like us they do you more than the world of good !!
With love Julia xx
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