SERO=NEGATIVE INFLAMMATORY ARTHRITIS

soraya

Well i need a rant consultant is treating me for RA but letter goes to doc saying sero-negative arthritis help im confused as well as just starting methotraxate and steriods im so low at the mo dont know if im coming or going and im constanly in pain rant over

magenta

Hiya,

I've got sero-neg arthritis but unfortunately have never been prescribed methotrexate or steroids. I'm sorry you're feeling so rubbish and hope the meds 'kick' in soon,

Magenta x

tjt6768

I've got sero neg too. Just been put on Sulfasalazine today.
It's a form of RA..
I know it can be frustrating, been there.. Lol
Hope things settle for you soon

julie47

Hi Soraya

Sorry you are feeling so low at the moment, :sad: I hope the steroid kicks in and that you soon start to feel much better,

Take care
Juliepf x

BikerAngel

Hi I was diagnosed with that after I was diagnosed with palandromic and it had progressed. I had no rheumatoid factors in my bloods but all the symptoms so he said sero neg oligo which just means in more than one joint. The last letter written to my doc just stated RA.
I was initially on sulphasalazine which worked well then I guess my body got used to it so went onto methotrexate and gradually increased to 20mg (8tablets) which worked well until last 2 month which has seen me get worse and more joints get bad.
I am in severe pain today and struggle to walk, use hands,etc but got rheumatologist tomorrow so fingers crossed there was word of putting me on anti tnf next so will see what tomorrow brings.
I feel so low at the mo and cry and get angry and frustrated as I was such an active person and horse rode and had motorbike but thats all gone now and hubby and daughter have to do so much for me I hate it I am such an independant person so asking for help is just not me and having to admit defeat is even worse but I am trying to deal with it and hope it gets better. This forum is good as it shows we are not alone and others feel same but that others also care. Good luck xx

soraya

Thankyou all for your positivity, ive just been on such a roller coaster and its so hard sometimes, (as we all know) and bikerangel i know the feeling of being independent and not being able to sometimes even walk, plus sciatica to add insult to injury, im even scared of the prospect of work at the mo when falling asleep in the afternoon seems to be normal now, but i know returning to what i use to do standing for 8 hours a day in an opticains is just not gona work its hard enough standing at the sink peeling potatoes when my hands dont hurt :sad: im sorry im trying to be positive its just knowing this is never going to go away and sometimes people dont believe there is anything wrong with you because you cant see pain, this place has been a lifeline thankyou all again Tony, bikerangel, magenta, and julie47

joon51

Hi Soraya, each time I go to see the Rheumy He sends me and the gp a letter. On it says what the diagnosis is well each time seems to be different, I am seeing my Rheumy Nurse next week and will talk to her about it.

As to work I know what you mean I am also on my feet all day, some days I do struggle thinking I wish I could go home but when I have finished my days work I am glad I didn't go home. It is very hard trying to get a happy medium as some weeks I spend most of the weekend recovering from working.

Take Care Junex

woodbon

Hi, Just to say I'm sorry for the diagnosis, but at least that means you'r having the right drugs earlier than a lot of people and they help protect your joints from further damage!

I don't have the same type of arthritis that you have, but I do know that it is a horrible thing to have to get used to. Lots of people on here have your problem and I'm sure they will offer you help and information and don't forget the Helpline number at the top right hand of the page. They are very good with helping you come to terms with it and will send you leaflets with good practical information in them.
Take care, love Suexxx

topgirl

Hi!!!

you must feel pretty low......us 'sero-negative' ones seem to be the ones that take ages to be diagnoised simply because not having 'R' factor in blood makes things harder for GP/Rheumy's.....
There are over 200 different types of 'Inflam' arthritis..and sometimes a proper RA diagnosis comes later on when you either get more symptoms or the reaction to treatment....
Either way treatment is the same anyhow ...give it a couple of months for methotrexate to kick in, take time of work if needed, chat to people on here if you need to ....as my consultant says...' we are are strange bunch us sero's'..... :???:

topgirl

BikerAngel wrote:

Hi I was diagnosed with that after I was diagnosed with palandromic and it had progressed. I had no rheumatoid factors in my bloods but all the symptoms so he said sero neg oligo which just means in more than one joint. The last letter written to my doc just stated RA.
I was initially on sulphasalazine which worked well then I guess my body got used to it so went onto methotrexate and gradually increased to 20mg (8tablets) which worked well until last 2 month which has seen me get worse and more joints get bad.
I am in severe pain today and struggle to walk, use hands,etc but got rheumatologist tomorrow so fingers crossed there was word of putting me on anti tnf next so will see what tomorrow brings.
I feel so low at the mo and cry and get angry and frustrated as I was such an active person and horse rode and had motorbike but thats all gone now and hubby and daughter have to do so much for me I hate it I am such an independant person so asking for help is just not me and having to admit defeat is even worse but I am trying to deal with it and hope it gets better. This forum is good as it shows we are not alone and others feel same but that others also care. Good luck xx

gosh.....Your story sounds just like mine.....friday is second assessment for first anti TNF....xxx

Mat48

While I hate the idea of you suffering I also find it reassuring that people can get a diagnosis while being sero-negative at least. I will be relieved if I get a diagnosis in November and prescribed with steroids and mtx because being in pain and not having a diagnosis is worst of all as you can't even tell people what's wrong and you have the worry that nothing's being done and it feels like rapid deterioration is taking place and it's very scary

I'm positive for RF (but only low positive at 24 last time they checked) and negative for the other anti-ccp which makes it more complicated to diagnose I think because the other, anti-ccp, is is the one that they use to confirm. If both are positive and symptoms correspond then they almost certainly diagnose you with RA. Which is depressing of course because no one wants RA - but if you are in pain anyway and can't do basic things and feel ignored and undiagnosed then that's a lot more depressing in my book?

Also I did read that if you are sero-negative it means the outlook is better than those who are positive so that's something to feel relieved about? It may not feel so positive now when you are in pain of course but if you've got to have this horrible disease then it seems to me that you are at least in a relatively lucky place just now with steroids and drugs and a diagnosis despite being sero-negative?

So please cheer up you are probably on the road to feeling much better soon hopefully and you now know what is wrong with you and why you are in pain and are being treated. Mat

topgirl

Mat48 wrote:

While I hate the idea of you suffering I also find it reassuring that people can get a diagnosis while being sero-negative at least. I will be relieved if I get a diagnosis in November and prescribed with steroids and mtx because being in pain and not having a diagnosis is worst of all as you can't even tell people what's wrong and you have the worry that nothing's being done and it feels like rapid deterioration is taking place and it's very scary

I'm positive for RF (but only low positive at 24 last time they checked) and negative for the other anti-ccp which makes it more complicated to diagnose I think because the other, anti-ccp, is is the one that they use to confirm. If both are positive and symptoms correspond then they almost certainly diagnose you with RA. Which is depressing of course because no one wants RA - but if you are in pain anyway and can't do basic things and feel ignored and undiagnosed then that's a lot more depressing in my book?

Also I did read that if you are sero-negative it means the outlook is better than those who are positive so that's something to feel relieved about? It may not feel so positive now when you are in pain of course but if you've got to have this horrible disease then it seems to me that you are at least in a relatively lucky place just now with steroids and drugs and a diagnosis despite being sero-negative?

So please cheer up you are probably on the road to feeling much better soon hopefully and you now know what is wrong with you and why you are in pain and are being treated. Mat

You sound fed up too...
Mat..It took me 2 years to start treatment......Have you got a rheumy then?or just GP treating you....if its the latter get GP to refer...mine is brilliant....My bloods look totally fine :???: In the end they took samples out of my knee..which confirmed RA....Yes hopefully we wont get worse....worth knowing that we prob will get the 'R' factor in blood at some point...weird isnt it???x

tjt6768

not long after my first consultation with the rheumy doctor he diagnosed sero negative arthur, started me on hydroxy straight away, however it did nothing other than make me lose weight. They stopped it last year with no mention of anything to replace it.. So this whole year I've just been relying on painkillers. I've gotten a lot worse rather quickly over these last ten months but at last yesterday they started me on sulfa.
I hope it works, I know out can take a good while before it had any effect if it's gonna do.

Sorry for the above, seems like I'm moaning but I'm not.

Mat48

Yes Top girl thanks for noticing I'm pretty fed up too I admit. Probably the awful weather here in N Scotland isn't helping though. Today pain has receded and all is flu- like ache - especially fingers. I do have a rheumy have seen him once back in July. I will see him again in end November. He was brisk and explained that because he couldn't see any sign of swelling or damage he needed to be more certain before he diagnosed and put me on methotrexate. He did say something was certainly going on as seem in bloods but since them he's written to GP to say that as anti CCP test negative he was unlikely to make a diagnosis this coming apt in a month. I thought they were meant to go by symptoms because of sero negative thing?

My GP on the other hand was fairly sure last Spring that I had RA on basis of symptoms, family history, positive RFactor and raised ESR - he even put me on sulphasalazine but I had a bad reaction to it and anyway it turned out rheumy would have taken me off it as he thought GP was being too premature and shouldn't have made this decision as a GP. Personally I thought GP was brave as he knew how long I'd have to wait to see a consultant. I live on an island so everything pretty slow and GPs here have to do stuff that mainland ones wouldnt contemplate! ah well just hope they can make a decision this November but not counting my chickens. :roll: Thanks for your concern.. Mat x

tjt6768

bloody hell Mat. I hope that something is done for you in November.
Best of luck..

Mat48

Thanks first understanding how this process is unhinging me Tony! I went through all the coming to terms etc when GP diagnosed me but being in limbo is proving impossible to come to terms with?! And I really know I'm starting to lose it when I find myself envying others their diagnosis and medication?!

Hope the Sulfasalazine works wonders for you. I managed 3 weeks on it and it did seem to be working for joints but when he doubled the dose to 20mgs I got lumps in my neck and an all body itchy purple rash and had to come off it! Then I got Kenalog steroid jab for 6 weeks which was good too but for the past 4 months ive been living on standard painkillers and amitriptriptyline and flaring on and off constantly. As others have said I hate depending on hubby for so many things it's depressing he's a care worker and I feel like one of his clients not his wife? And as for our 3 teen sons.. Well thats another story! Mat x

tjt6768

It's a terrible thing having to rely on the ones we love the most. I know that one..
I also know that I'd be there if it was the other way round, that's what marriage is all about. Being there for each other no matter what.
I've had one horrible flare after another since the start of the year do am really hoping this sulfa helps..

Gotta stay positive though

Best of luck..

Mat48

As long as you're not like me Tony and don't get some very unusual reaction to it I am sure it will help a lot..I think it would have helped me a lot if things hadn't gone wrong side effect wise. Recommend you only go up dose slowly one more tablet at a time when they have done the regular bloods.

I am trying to get into positive mode just now because hubby is in great holiday mood with another week off night work to go so I don't want to spoil his happiness with current tendency towards gloom and worry. And after all I'm almost having a day off real pain so flu like aches are nothing really as I can move about at least - yipee. Take each day one at a time is new mantra doesn't come easily but I will keep trying! Mat x

tjt6768

that's the spirit Mat..
I'm starting on one tablet each morning for a week, then one morning and night for a week, then two morning one at night third week building up to two morning two at might in week four.
Bloods checked every two weeks..

Mat48

You see that's why it is better to wait and do things properly - your staggered dosage increase sounds much more sensible than mine was! Good luck Tony I hope and believe this might be the start of things improving for you - give it about 3 weeks before a difference is felt and let us know how you get on! Mat x

topgirl

Mat,

Its must be pretty stressful at mo :???: sometimes I moan about Manchester but im 10 mins away from my specialist..........
I had Sulfa too and had a bad reaction too.....Methotrexate is better..still takes a while to get into the system tho.....
Yes your Rumy should not go on just bloods...but what you feel like, swelling , redness etc.....
And yes us 'sero' lot should hopefully not be as bad..BUT rumy reckons we will get RF at some point..( we dont get away that easy :eek: )
What I have realised ( and some people may disagree...) is that when you have constant pain and 'flu like' symptoms you havent got your condition under control....I used to wonder why folks talked about 'flares' as mine was constant...BUT once treatment is working you will find these symptoms ease off and you are able to manage and be more or less back to normal give or take a few bad days....You are in one big flare as you are not being treated....let me know how you get on..I was like this for 2 years.....its not nice..things WILL get better......x

Mat48

Thanks TG you do cheer me up - really need it tonight as in finger and knuckle hell - would just take the Pred steroids but don't want to mess up blood tests GP's taking next week. If like this still tomorrow then i'll phone him ask him if he could take them sooner so I can take the pred as can't stand much more of this 24/7 flare!? Mat x

theresa4

Hi
I've had sero neg RA for 6 years now the last two being the worst. I'm lucky no major joint damage as yet just fingers bit and wrists. I was given depo steroid and started on hydroxychloroquine but it was useless, then sulphasalzi e still nothing then methotrexate and I had a little bit of a reprieve on full injection dose (can't have the tabs I have potato allergy and they have pot starch in them) but it made me I'll for a day each week and the prof I was under said that wasn't good enough so I was trialled on 4 of the biologics one by one none worked. I'm now having tests for inflammatory bowel disease IBD which is often linked to sero negative RA. You are lucky that you're pain is being tAken seriously as often sero negs get ignored as gps are not aware that negative RA bloods is not a diagnosis.
Don't worry about the label sero neg / RA /inflam arthritis it pretty much means same treatment. Wishing you well and I hope this isn't too depressing for you I just wanted you to know you're not alone in this.
Good luck
Theresa

tjt6768

I've got to admit that the name can be confusing to some. Had fun explaining it to my Mum over the phone... A lot of 'what?s' etc.
I've noticed that I've got a small lump starting on my middle finger, right hand. Just appeared, not sore or owt.. Also, the fingers on mi left hand are puffing up, but just the top parts on the middle bone bits if that makes sense. I'm not worried or anything, just wondered if anyone knew if this was normal or whatever..

theresa4

Stop sticking it up then

Seriously tony
I have like bony swelling on the middle joints of my fingers too especially my middle fingers it's worse on my right hand it's been like that for at least a year but just recently it's become really painful. I don't agree that sero neg is better as my pain and decreased mobility is just as bad as some with sero positive RA if not worse sometimes and for a long while I felt like a fraud. Mmm maybe that's why my middle finger is swollen

Theresa x

tjt6768

Look, I've got a poorly finger!
(don't look if you will be offended by a photo of an old fart giving the finger, lol) you've been warned
http://i1219.photobucket.com/albums/dd427/TJT6768/C360_2011-05-0513-34-36_org.jpg