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Rank: Newbie
Groups: Registered
Joined: 7/26/2010
Posts: 2
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hELLO ALL , I have just been diagnosed with RA, but always knew i had it. It was only after many consultants and being fobbed off that i came across a good consultant who did the anti ccp blood test on me and hey presto[RA]. I have read all the messages on the forum since last December to get me up to speed. I would like to ask a few questions if any one can answer them or point me in the right direction. Does anybody know the scales of severity of the anti ccp,what is the range? Has a nras group been formed in Leicester yet,or is anybody interested in starting one? How long does mxt take to work? I hope to hear from you all soon,nice to talk to you regards Jill M
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 89 Location: Braintree, Essex
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Hi Jill
Welcome to the forum,sorry you have this horrible R.A.
Im corinne was diag last april,mtx took bout 4-6 wks to kick in with help of depo (steriod inj) but was not enough so put me on sulferzaline as well, this has failed so now going for anit-tnf you may have read about these! everyone is different regards to how the meds work but there is a wealth of knowledge on this site and eveyone is very friendly/helpfull. I only know the DAS score and that 5.1 is moderate to severe, im on 7.1 at more im sure someone will fill you in on ccp rate there is so much to take in I hope you get a good level of care keep posting
love corinne xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/16/2009 Posts: 156
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Hi
welcome to our group sorry you have RA but this forum will help you a lot.
I was diagnossed april 2009 and have had loads of help and support off these lovely people on this forum, i am sure some one will explain to you all about the differant scales etc but one of the best people to ask is you rummy nurse Have you got one yet ? about mtx i was tried on it and was on it for about 2mths and then had to come off it has my liver was not happy with it, and then went on to sulpsalizine and that did not work, i am now on ANTi tnf had six injections not sure what is happening in side not a lot on the out side, but hope the treatment works for you and has you will hear on this forum many times everyone is differant so all the drugs will be differant to us all.
please do keep us in touch with how you are going and if you need advice just ask because i have done in the past and there is always someone who can help you.
well bye for now stay safe.
Audrey.
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Rank: Advanced Member
Groups: Registered
Joined: 12/8/2009
Posts: 35
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Hi Jill, welcome to the forum. sorry you have RA. Like you I was told nothing was wrong - lots of negative rheumatoid factor results until the CCP test came back positive. I take MTX and to be honest it took about 3 months to have an impact and about 6 months to really turn my life around. It isn't always plain sailing but this drug has given me my life back - I hope it does the same for you. I haven't posted for ages but relied really heavily on the forum when I was first diagnosed and it was a god-send - such lovely supportive people. Jo 
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Jill, Welcome to the forum! I'm sorry you have RA but it's such a relief when you finally get a confirmed diagnosis that they can start to treat. I've had RA for seven years now, I'm 40 years old and have two little peeps ... my daughter of ten and my son who's nearly seven. Looking forward to get to know you better Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Jill, Welcome to the wacky world of the NRAS forum.It`s probably a relief to you to finally have an actual diagnosis, and thus start treatment, though not exactly something you would have wished for. I live in Durham, so can`t help with regards to your query about Leicester. Methotrexate can take up to 12 weeks to begin to have any effect on your RA, so it`s very much a case of being patient, however frustrating that may be.If there isn`t any real improvement by then they may add another DMARD into the mix. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jill,
Welcome to the forum!
You'll get lots of support and friendly advice on here.
I am 60 and have had RA for 9 years, now in mtx and humira.
As others have said, it can take up to 6 months for the mtx to really make a difference, I hope it soon kicks in for you.
Looking forward to getting to know you.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Helo welcome I had Sero negative RA since yonks ago 17 now 39,wish you well on starting treatment hugs melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/5/2009 Posts: 216 Location: Leicester, UK
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Hi Jill,
Welcome to the forum and so sorry to hear you have RA.
I am in Leicester and no, there is no group as yet. I would love there to be one, but just don't have the energy to set it up. There are several NRAS members in Leicester/Leicestershire and if you would like a get-together, I'm sure we could get together and maybe think about starting a group together. I do know that NRAS are very supportive with new groups.
My email is monty21@ntlworld.com if you want to contact me direct.
Warmest wishes, Ann"I cannot do everything. I accept that. Not being able to do everything is no excuse for doing nothing." ~ Helen Keller
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hello and welcome jill
the anti ccp is a specific test that costs quite a bit so they dont order it often- it has only been about for about 5-10 yrs in the uk. not everyone with ra tests positive but it is more diagnostic than the rheumatoid factor as it is specifically for ra. when it first came out it was the definative answer but now is viewed with more caution as you can have a positive and no ra symptoms. Also, some have negative bloods all the way through and have very clear RA.
http://www.ehow.com/how_...blood-test-results.html
0-17 is normal range anti ccp
people who are very positive anti ccp with active disease get results up well above this, mine is always too high for measure unfortunatley (I have severe disease).
We had our annual forum meet up in Leicester and met Ann and the others- we had a great time!
Wishing you every success
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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Hi Jill
Welcome to the NRAS forum 
I'm Helly and live in Hinckley. I'm 35 and was diagnosed with juvenile rheumatoid arthritis (stills disease) when I was 2. This went into remission when I was 12 thanks to a combination of steroids and methotrexate.
The arthritis stayed in remission until last September when a combination of stress, illness and an infected mosquito bite brought it back. Luckily, I managed to get back onto DMARDs fairly quickly and started hydroxychloroquine in the November.. I had the brilliant news 2 weeks ago that my disease activity has dropped considerably so looks like it could go back into remission. I'm now slowly reducing my meds and seeing what happens...
I know how frustrating it is to go from feeling well to suddenly feeling like you're 90yrs old and rattling with all the tablets. It can take a few months before you see any results and it also depends on how you self manage. Its a huge adjustment to make but its important to realise that you do need to pander to your arthritis. While it shouldn't rule your life, it can affect how you feel, especially with fatigue.
I am currently looking to set up a group for the Leicester area as there isn't one and the nearest ones I believe are in Derby/Stoke on Trent and Birmingham. Things have been a bit hectic with me recently as I started a University course in June so will keep you posted. If you fancy meeting up for a coffee then I'm sure we can sort something out (not sure if you use Facebook but I am on there as Helly Copeland or you can email me tigg@bouncingtigger.com Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopeland Read my blog - Helly Copeland
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Welcome Jill,
but very sorry you have RA,
Glad you have found us tho' & as others say this forum is such a help - i really dont think i would know what to do without it now,
anyway Im Liz 40 & have had RA since i was 27,
looking forward to chatting again soon xx
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Jill, I'm Lorna I have had RA for almost 3 years. Sorry to hear you have it too. You asked about ccp when I was ill mine was 218, thank goodness It calmed down. I have been on the triple therapy and have done really well on it. Along with steroid injections I saw a difference within a few weeks but they say it can take up to 12 weeks. Hope you keep really well on your drugs and see a big improvement too. Look forward to your postings. Lorna x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Jill
Sorry I'm late in on this, but welcome!
I really hope you contact Ann and manage to get-together with the other peeps who live in the Leicester area. It's always good to meet others with RA.
Love Jeanxxx
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Rank: Advanced Member  Groups: Registered
Joined: 7/10/2010 Posts: 43 Location: Little Dewchurch, Hereford
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Hi Jill! I know what you mean about feeling fobbed off. I was labelled 'arthralgia' for ages, even after being put on sulfasalazine as my bloods wouldn't come back down after going back up after I responded to a trial depomedrone injection. Eventually I got called 'sero-negative arthropathy', I think after I had a mild trigger finger when in clinic, and also needed a shoulder injecting. I was ( & still am) Rheum Factor neg, and only found out they'd even tested me for antiCCP after the other consultant diagnosed me with RA after doing ultrasound of my hands & feet. I still sometimes think my Consultant only asked for it because I'm medically trained & he wanted to stop me winging (?) Anyway after that I started MTX, & then hydroxychloroquine before going on to Humira. Each definitely seemed to help quite a bit when first started, after allowing a few weeks for them to kick in, so hope all well for you Thank goodness for NRAS as it has so much info in a readable form about drugs etc!  Good luck Sally
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Rank: Advanced Member
Groups: Registered
Joined: 12/21/2009
Posts: 106
Location: cornwall
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hi jill
firstly welconme to the NRAS site--it has been so useful to me especially in the first few months the members are really lovely and very supportive
i'm not on here as often as i should be but you will always get a positive response from everyone--even if they cannot answer your quetions they will know some one who can
like others that have already posted i was 'fobbed' off with sjogrens syndrome
then my consultant dropped his list and i was booked onto another consultant and things have moved so fast--she also did anti ccp which came back positive for RA all this happened in may-- 2 and a half years after i first went!!!
i am on naproxen/sulphasalazine/hydroxychloroquinine/co-codamol etc--the sulph was started end of may but i have not been able to gt on with it so consult suggested MTX if things were not working out--we will see next week at rev appointment
keep posting
take care
caz x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi all
I would just like to mention that I was fobbed off by consultant ( still now not quite sure of his titile ) long story, anyway I was desperate to find out what was wrong with me, so I went to see a consultant privately who I found on the internet ( had not discovered NRAS at this point ). I thought the ant-ccp was very expensive anyway I had it there and then, cost just over £50 ( privately ) got the result the following evening told me it was 97 and that I had RA. At that point I obviously moved on, mind you as snails pace !
Julia
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Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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hello, sorry also late, been away. i had an anti-ccp done while immobile and throbbing with pain, was told it was at least 5 times higher than top of normal range and actually off their scales ie over 100 - 2.4 years later I am currently very fit and active thanks to Humira, MTX and fine weather. i don't even taker painkillers at the moment. consultant said it was bad news to have high numbers, but that a lot depended on my gene alleles and auto-immune environment, so the scary number didn't matter. MTX alone never worked for me, and my consultant clearly bounced me through anti-tnf pre-assessment shenanigans. I wish you a fair wind behind you from a good team and a quick journey to whatever treatment you need xfrankyx
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Rank: Newbie
Groups: Registered
Joined: 7/26/2010
Posts: 5
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Hi JIm and everyone else, I'm new to site although i'm 40 years old with a 6 year old girl. Like you i was fobbed off. I new that I had R.A but because my R.A results were negative they wouldn't diagonse me. After a 1 1/2 was sent to a different hospital who done a ccp on me which came back positive. I put a complaint into the hospital becuase they wouldn't diagnose me and apparentely they now will test people who have a negative R.A test Methro can take up to 3 months to work, and not sure about the ccp, but mine is currentley 60. I'm now on Enbrel for the past couple of weeks and I've had good results so far. i hope that the Methro works for you.
I think It's really sad that they still won't always do the anti-ccp test when the Rheu factor is negative as the Rheu factor I think has a 30% chance of being negative. I wish you all the best
Angela
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Jill Welcome to the forum. Hope you will find lots of useful information and make new friends. I know many refer to being 'fobbed off' by their medical practitioners but can I just say that RA is an extremely difficult illness to diagnose. In fairness to them the early symptoms can be representative of so many minor irritations that if each was to be taken as a possible case of RA we would never get to see a Rheumatologist! I have had sero negative RA for 22 years. I am regarded as 'severe', probably due to the ineffectiveness of the treatment at that time. I am Rheumatoid Factor negative, anti -CCP negative. My blood test results are always topsy-turvy so thank goodness for doctors who use a modicum of common sense and caution in their diagnosing! Being needlessly prescribed toxic drugs for a condition it turns out we don't actually have would have us all raising the roof!! Worthy of note is that a positive anti-CCP doesn't always mean RA. Positive RF and positive anti-CCP can occur in up to 17% of the population who do not have RA or go on to develop RA! Lyn x
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