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Date: 09.03.2010
From: KayJay

Subject: Even More Confused After Seeing Rhumie Nurse !!

Just come back from seeing Rhumie Nurse - the usual 1 hour wait. She said I have an out of range RF and the CCP was negative ?? Good grief the Rhumie Consultant told me I had Rhuematoid Arthritis when I saw him last and the nurse said yes it depends on which doctor you see and what they call it !!! How confusing - can some explain in laymans terms for me please ??
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Date: 09.03.2010
From: Sally

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

hi KJ, not entirely sure what you mean by 'out of range RF' but I am negative for RF and CCP negative and they call it 'sero negative inflammatory arthritis.' But, for all intents and purposes it is Rheumatoid as the course of the disease and the treatment is the same. Sometimes peeps test negative for RF at the beginning then few months/years on they test positive. At least, this is how I understand it! Correct me if I'm wrong other peeps!
As long as they are treating you it doesn't really matter. I can't remember what you are taking, are you on Methotrexate or something else?
xx
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Date: 10.03.2010
From: KayJay

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

Sally when I said out of range this is what the consultant told me. In fact the RF was high [ I think 80 ] but the CCP was negative ?? I'm on Plaquenil and the rhumie nurse said I'm on that because of other drugs I'm taking for diabetes but they will review in 3 months to see if I'm responding to it then they may review it. But I don't see how we can actually know what we have got if even the Consultants are calling it different names ie Inflammatory arth vs Rhuematoid arther ?? So if my RF is positive but CCP is negative what would I be - sero positive inflammatory arthritis ?? Ow my brain hurts it's sooo confusin' xx
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Date: 10.03.2010
From: Sally

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

hi KJ, as I understand it, if you are RF is positive you have Rheumatoid - though some peeps with positive RF don't suffer the symptoms of Rheumatoid - but you do! Sero negative is when you don't have RF factor. Not sure about CCP, mine was negative but I think they go on RF, not nec CCP, at least that's what my consultant said. It is very confusing but my gp told me there is a lot they don't know about inflammatory arthritis. That it may be in a few years (?) other factors might be identified which point to a more specific diagnosis. My brain hurts too after that!
xx
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Date: 10.03.2010
From: Jill

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

hI kJ, Sally is correct, as far am im concerend, confusing I know...I was diagnosed with Reiters disease, that leaves me with Inflam Artha, however, my RF was 97 at one time, another rhummy told me I had R.A., was admitted to hosp at that time, but other rhummy said its Inflam artha, due to the Reiters...Like sally said, in terms of help, same meds, However, due to the Ignorance of the DLS, and claiming(hope U r) writing down that U have R.A.seems that ppl get the benefit easier....R.A. ia inflamatory anyway, synovitis gets inflamed, just like in Infla artha and R.A. and prob all the other Arthritis, 200 or so diff types, ours is Common lololol....hope this kinda helps, I still get confused over my diagnosis, cos my body had gone crazy, now got Tendon degenration, there isnt a med in the world to fix that! so peed right off, got enuff health issues to sink a sub! tc xx
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Date: 10.03.2010
From: KayJay

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

Hi Sally + Jill thanks M8's!! Yes I've got synovitis in my knuckles and stiff and achy all over. One day it's the knee / shoulders/hands etc then another day it could be my ankle etc. I got dla before all the rhumie stuff bcos of my gimpy ankle [ got oa damage ] like I've told before I have to wear orthotic support, bad left hip and mucle waste in the left thigh and have walked with a stick for a couple of years now. I was refused the 1st time and the panel were orrible !! The doctor said to take stronger pain killers !! Anyway I re applied 3 months after only that time I let the CAB fill it out for me and got it then !! Sorry to hear about your health issues jill you would have thought that they had sorted it out for you by now after being in hospital .... tut tut xxx
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Date: 10.03.2010
From: Sally

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

On my last rheumie visit 3 weeks ago was told synovitis in my wrist and some other things I don't understand - perhaps you and Jill might 'she has synovitis of the right wrist and several MCP and PIP joints'. Looked it up on the web but couldn't work out what he meant. Any ideas?
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Date: 10.03.2010
From: KayJay

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

Sally I think the MCP and PIP are the joints of the fingers ? Have you had the ultra sound scan done on them ? because the guy who did mine told me what was wrong as I was watching on the screen.
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Date: 10.03.2010
From: kirsty

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

Hey guys yes you are right the mcp joints (meta carpal phalangeal) are the knuckle joints on your hand the ones between the bones of your hands and the bones of your fingers. The PIP is proximal inter phalangeal joint which is the next knuckle down from the MCP so the bigger knuckle on your finger. The last knuckle the one enarest your finger tip is called the distal inter phalangeal joint (DIP) hope this helps dont know how to exsplain this any better.
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Date: 10.03.2010
From: KayJay

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

Spot on kirsty - thanks !!
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Date: 10.03.2010
From: Sally

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

Thanks guys! Guess I've got swollen knuckles then lol! Hadn't noticed myself. No, haven't had any ultrasound on my hands, had it on my shoulder and my knee and he said everything he looked at had synovitis cos'it's inflammatory, innit.
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Date: 12.03.2010
From: jill

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

been told same sally, the Synovitis has a world of its own, and when it wants to pee me off, it does a great job, mostly flying around my hip joints and knees, feet, fingers, hmmmm whole body lololol
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Date: 12.03.2010
From: Sally

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

I know the feeling Jill! Looking at my knuckles tonight they are def swollen in one hand. Can't tell with the other. Mind you, I didn't even notice my knees were swollen last year when everyone says how bad they were. I took a photo so I could have a proper look and still couldn't tell. Then looked for knees on the internet to make a comparison and mine still looked ok to me.
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Date: 13.03.2010
From: KayJay

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

Sally I didn't know about this synovitis stuff until the ultra sound. All I know the joints hurt like mad in my hands. The ultra sound guy said oh your right middle finger is quite swollen isn't it? I hadn't noticed that just the pain of trying to bend it !! The next finger along [ ring finger ] started the other night could hardly sleep with the pain. Noticed the " sausage finger syndrome " though the next day !! I'm okay for a while then it starts and I'm like oh no ..... it's back !! It's me hips turn today but can't actually see the swelling there can we ?
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Date: 13.03.2010
From: sally

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

KJ that sounds painful. I think mine can't be as bad as yours. Though everything flares up when I reduce steroids as I did Thurs. Painful hips must be nasty. Don't we have to put up with a lot? xx
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Date: 13.03.2010
From: jill

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

woke up with terrible hip pain yest, thru the groin, down the front thigh! today not so bad, but upper spine(riddled with artha) so stiff, neck usual pain is the ass! ibe also got Trigger finger and thumbs, ever heard of that? its in all the blidddy digits of fingers, cos they r all like it, wont have ops, orig they were going to operate on thumb, instead had injection, whilst having shoulder ops, so dont know if that wld hurt whilst awake, but over the years, well 3 years to be precise, all didgits r affected...they crunch, somnething to do with the tendons...again!
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Date: 13.03.2010
From: KayJay

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

Sally + Jill what we all want is a nice holiday in the sun !! Or as Mum used to say we all want putting in a bag and shaking up ;0)

I've heard of trigger finger Jill and when my fingers start to hurt they sort of curl in and it hurts more to straghten them. I'm going to ask the gp on Tues if it might be an idea to put a straight splint on them when they start hurting ? Yeah arthers a bitch in the spine isn't it ? mines at the lower end and the ortho said the Xray on my hips look like they are " old " hips !! cheeky young pup I'm only 56 !!
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Date: 13.03.2010
From: jill

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

Did ya hit him KJ lol... they told me my shoulder tendons r the age of 75/80 year old!!! now that made me feeel great........NOT!!!!! KJ havnt seen the finger splints, ive got the hand splints that hosp give out, velcro straps, but they didnt ever help my fingers.....finger pain to me is like having an abssess....gnawing pain!
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Date: 14.03.2010
From: sally

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

Too right about the holiday KJ! I would love to bask in the sun for a bit.
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Date: 15.03.2010
From: jill

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

when I get my compensation, im goona go away for a week to Greece! deserve it, after that rotten whiplash and constant dizzzyness! been to Skiathos, that was fab, but want to go to Crete, mind U, mite take two years to get it LOLOL...mind u, went to Portugal twice in 8 months last April, and the aug b4 that!, but I hate all that airport poo, tires me bad, anyway (sister wealthy) went with her, was lovely....
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Date: 15.03.2010
From: Verity

Subject: Re: Even More Confused After Seeing Rhumie Nurse !!

Oh how I love the sun! [stares into distance with a meloncholy gaze!]
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