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Date: 11.03.2010
From: Minnie

Subject: seronegative rheumatoid arthritis

I just like to say yesterday i had to go and get cortisone injection on my knee, which I had done plenty of times, I even had surey (wash out). I was diagnose having seronegative Rheumatoid Arthritis, which thinking that I did not have RH, but was inform i have it, just cos your blood test show negative don't mean anything. I would like to know if this is true, since the nurse who told me this is making really think. I wish my doctor should have told me... I will see him soon and will question it, after all I like to be able to know whats going to happen to me in later in life.
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Date: 11.03.2010
From: valh

Subject: Re: seronegative rheumatoid arthritis

hi i have heard this is true. some times they see how things are panning out to see what it is, every one shows different and lots of people do not show it in there blood .know one will be able to tell you how it will affect you as every one is different but with the right meds life will be much better so good luck . if you look at arthritis care they have lots of information you can read about it to help you decide what you want to ask your gp
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Date: 11.03.2010
From: Sally

Subject: Re: seronegative rheumatoid arthritis

Hi Minnie, I've got sero negative arthritis too. There are quite a few threads on it here I think.
The treatment is the same as RA it's just that it is harder to diagnose because of the negative blood test. I will try and bump up some of the other threads rather than repeating what's already been said.
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Date: 11.03.2010
From: Sally

Subject: Re: seronegative rheumatoid arthritis

p.s. look at the one saying 'inflammatory arthritis'
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Date: 11.03.2010
From: Paul

Subject: Re: seronegative rheumatoid arthritis

yes its the same but not as aggressive as positive RA and is treated the same way.

So your nurse is correct in stating that even though your negative you still have RA.

I had sero-negative arthritis for my first 3 years of the disease and then went downhill big time (1.5 years of work) and my blood tests became positive. This is called sero-positive arthritis.

It was only during this positive stage that my joints started to deform with bone wearing away in my hands, feet and jaw.

Theres loads on the net about the types of RA and theres loads of different types.

All the best and i hope this helps clear up your concerns.

regards

Paul
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Date: 11.03.2010
From: Paul

Subject: Re: seronegative rheumatoid arthritis

found this:

Seventy to 90% of patients with rheumatoid arthritis (RA) test positive...positive for "rheumatoid factor (RF)" which represents abnormal antibodies in the blood. Sometimes, very early in the course of RA, the RF test is negative. The RF test can, also, be positive, however, in patients with no disease or can be positive in patients with "other diseases and conditions, including certain infections such as Lyme disease, periodontal disease", tuberculosis, Lupus, collagen vascular disease and "even the flu". Some individuals have RA, but continue to have a negative RF test..."referred to as seronegative RA".
"Seronegative RA is a distinct, though usually less aggressive" (but not always) "form of the disease". Many specialists believe that patients with the manifestations of RA, but are RF negative are "in an early phase of the disease spectrum...some eventually do seroconvert", ie become RF positive. These patients who do convert from negative to positive as their disease progresses "have courses parallel to those of initially seropositive patients".
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Date: 11.03.2010
From: Sally

Subject: Re: seronegative rheumatoid arthritis

hi Paul, my gp says there can be no difference in the aggressiveness of sero neg and RA. It is a myth as many peeps who are sero positive don't have an aggressive form of the disease. It is very individual. It is called sero- cos' you don't test positive, that's all as far as my consultant says. Also, the trajectory of the disease for both is influenced by the medication you are on - some people do very well on it, others less so.

I was so severely ill last summer when I first got the disease (sero-)all the doctors thought I was someone in an acute stage of RA who was having a very severe flare up. I was hospitalised for 10 days as was so ill. How can sero - be a 'distinct ....form of the disease' if many people go on to develop the RF in their blood and are completely incapacitated by it? Also, the treatment is identical. The truth of the matter is that there is a lot about this disease, and other arthritis conditions, that doctor's don't know. It may well be that in a few years time they will be able to identify markers that distinguish one form of the disease from another but they can't do that yet.

I think all our experiences, though having lots in common, are very individual. I have friends with RA who are in a much better state than I am lol!

Sorry to be so depressing about it but I do feel strongly that the individual's experience of their illness should be the defining thing, not the label.
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Date: 11.03.2010
From: Verity

Subject: Re: seronegative rheumatoid arthritis

I agree Sally, my consultant has never really given me a decent diagnosis. Its always changing lol. I think shes settled on RA now but Ive not had any blood tests recently looking for RF (I think I was negative when I was a child). I just go with how I feel rather than the label. I may still be negative but the damage to my joints thats occurred in the last ten years is quite bad for such a short space of time.

Its definately VERY different form person to person.

xx
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Date: 11.03.2010
From: Minnie

Subject: Re: seronegative rheumatoid arthritis

I want to thank everyone , with this.. This really helps me now..I also would like to say, I have concerns about my DLA, when i apply for it i was diagnose with Spondylarthropathy, with my old Rummy, and the new Rummy said I have this seronegative rheumatoid arthritis .. Should I let them know brefore I have to reapply in Nov this year?
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Date: 11.03.2010
From: Verity

Subject: Re: seronegative rheumatoid arthritis

Id say its probably wise to let them know. Unless the symptoms have got loads better (which it doesn't sound like!) I doubt they'll stop you getting DLA for changing this. Although I havent changed anything on my DLA yet so not sure how theyd do it.
Let us know what happens : )

xx
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Date: 11.03.2010
From: KayJay

Subject: Re: seronegative rheumatoid arthritis

So to confuse things even more [ sorry ] my Rhumie Nurse said on Tuesday that my RF was high [80] but my CCP was negative. So does anyone know if I'm seronegative or seropositive please ??!!??

This was after the Consultant said I had RA but the Rhumie nurse said different consultants call it different names??!!

Verity don't you have a blood test at every visit to the Rhuematology ? Just mentioning this as our's do one every time.

Minnie it's not so much the "label" for dla but how it affects YOU in your daily life - difficulty in walking / getting around the home / not being able to go out etc. Always give them the worst case senario. [Thats what our Citizens Advice Bureau told me anyway and they managed to get this for me on my 2nd application].
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Date: 11.03.2010
From: Minnie

Subject: Re: seronegative rheumatoid arthritis

Kayjay, Its so hard to tell can you google it to see what the test means? I always goes what the nurse say, because the nurse spends more time with you, this is why I was so suprise what the nurse said to me , when I had my knee drain and given steriods in my knee.. As for my condtion when i apply, has got worst, I dont move well right now, I had the shot yesterday and resting and my knee is swollen again and painful, but I can walk to the bathroom with out crawling, i might walk slow but i do get there.. I hate flare ups..I was taking so many meds and my body rejects them, so I am on nothing again,I was taking arava, I had to stop taking that , because I got a rash all over my face, .. I been under so my stress my mom died in January and I had to hope on a plane to the USA .. with my condition and I did it.. it was not easy, but I did it.. I had to she was my mom, and we was very close..
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Date: 11.03.2010
From: KayJay

Subject: Re: seronegative rheumatoid arthritis

Minnie sorry to hear that, my sympathies. My Mum has been in a nursing home since 2004 suffering with Dementia. I'm sure that stress has a lot to do with arthritis [ inflammatory/RA/sero+/sero- etc ] as this is an auto immune disease. I started with Diabetes then Fibromyalgia now this [ whatever it is lol] all have come on since Mum started showing the signs of Dementia in 20001. hugs xx
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Date: 11.03.2010
From: Minnie

Subject: Re: seronegative rheumatoid arthritis

KayJay my mom on her last year of life she had Dementia so I can understand how you feel..one thing I have earn from my mother death is that I have regreats on not sending flowers on her last xmas, and not being there for her, even tho I live 3,600 miles away..she understand I know.. she was a good mom.. just always try to listen to your mom, my sister could not deal with it, and now she has regerts for not being giving any suppport. if anything alway talked to her, so when she its her time, you know in your heart you was there for her.. I can understand its very hard. good luck on finding out what you have..
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Date: 11.03.2010
From: KayJay

Subject: Re: seronegative rheumatoid arthritis

Thanks Minnie. Yes me an little sis visit her reguarly, have to go on 2 buses so not as regular as we would like. We luv her to bits, always have done b'cos she was a brilliant Mum.She can't talk now and hasn't been able to for years. Will be seeing her this Sunday for Mother's day, but we still miss her personality and spirit, all gone now to the dreaded Dementia disease.
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Date: 11.03.2010
From: Sally

Subject: Re: seronegative rheumatoid arthritis

hi Minnie, sorry to hear about your mum. I lost mine last September and it is a huge thing. I miss her terribly as I am sure you do too. It's hard to suffer a bereavement and deal with this illness at the same time. I got ill last summer and two weeks after I was out of hospital my mum went into hospital and died a week later. It was such a shock. Your mum would have known that you cared, flowers or not, mum's know everything about their children! My mum knew I loved her, even when we arguing :)
xx
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Date: 11.03.2010
From: Jill

Subject: Re: seronegative rheumatoid arthritis

I agree with U sal xx....our lovely Mums and My Dad was amazing, My dad died with Brain Tumour whilst I was hospitalised urgent in 2002 for 6 weeks,I was looking after him, and got sick, think stress, Major flare up, anyway...all u lovely ppl that have lost their amazing Mums, remember they r close by, love lives on, within us, ok xx

change of subject... Re R.A. and In flam Artha, I tested Neg for R.A. in 2002, then tested pos, esr was 97 and rising, two diff diagnosis...Like Sally says, dones tmatter, accept to the DLA, R.A. diagnosis, seems to hold some water with regards a claim!...Paul I know u know your stuff, but I have to tell u breifly my situation with Artharitis.....Like I said, they said it was Inflamatroy Artha, due to fact Ive got Reiters disease, then flare ups revealed I was pos...but becos I have Reiters, my rhummy wont accept that I have R.A. as such, becos Reiters if u get it chronicallly, and I did in 2002, usually leaves U with Inflamatory Arthritis, Now I know U mentione that Usuallly R.A. is worse than Inflam Artha, but I have to agree with Sally, I dont like to be compared to othes, I am me, I not only have Reiters, disease(reactive arthritis),Inflamatory Artha, Disc Degeneration Disease(DDD), Tendon Degenration, Cervical Spondy(posh word for Neck issues, 3 discs disappeared), so far I have had 7 operations on knees, major spine op, 2 shoulder ops, 2 hip ops on right hip, and now due another major spine op(fusion)....my illnesses are all complex individually, yet I have since 2003, been diagnosed almost yearly with a 'new diagnosis' via MRI scans, as they r an amazing piece of equiptment, it has to be the truth, its revealing and reveals all my conditons, and all the ops ive needed, and Ive since been diagnosed with Gastritis of the stomach Lining, and my Bio nurse told me, due to Imflam Artha!.... with out sounding(kind find the right word)' indulgent, or self centered in my illness, I dont yet know anyone tht has has the amount of corrective surgeries i have had, or the other serious conditons on top of their Arthritis's, which having R.A. or any other type of Artharitis is more than enough for a person, my body is Overwhelemd with pain and inflamation, its like it has its own lifecycle ofr pain and inflamation!...im never free of pain, becos of the amount of complex conditions I have..... of course we r all different, and my bio meds dont stop the soft tissue damage that keeps on occuring, i.e. discs, tendons, ligaments, so the bio and mTX helps the bones, but the
rest of me, the main structure of my body,(apart from the skeleton part) there is No medicine to stop the degenration, or help the pain..... anyway Guys, dont want any responses to this Post, becos im Not looking for help or support(said in the nicest way) dont like Labels just My view! and what type of is worse...R.A.? or Inflam artha? same treatment anyway.... Like Sally said, I also know a few people with R.A., had it years, and they have it mild, thank god! just think the DLA team, think R.A. is worse, and I know from my experience that it isnt!...anway, Paul I do understand where u r comning from, but I thought R.A. attacks just the smaller bones, like hands, feet, knuckles etc, bad, dont get me wrong, pain is pain, all pain, whatever it is, its terrible, all I know, is my major joints are affected as well as the smaller joints! Please correct me Paul, just that I read a site other day about R.A. exclusively, and I was surprised how much more the Inflam Artha that I have seems worse than R.A.......love to learn, so any help in learning more about R.A. is helpful.... sorry so long a message, Just I have been thru Hell and im still trying to climb back up, but think im staying down there a while yet, until agter my Fusion spine op, which Im terrrified to have....Love Jill x
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Date: 11.03.2010
From: jill

Subject: Re: seronegative rheumatoid arthritis

PS excuse spelling errors, bought a new keyboard, and it keeps putting in extra letters Grrrrrrrrr LOLOL
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Date: 11.03.2010
From: KayJay

Subject: Re: seronegative rheumatoid arthritis

Oh Jill you are really going through the mill. Pain is pain no matter what the label is. Couldn't sleep last night my finger was really hurting and it's swollen today. I call it " sausage finger time " !! Me hips are bad as well. Hope you are having some pain relief and don't worry bout the spelling - it's like that 'allo 'allo programme that used to be on telly hehe only kidding ;0)
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Date: 11.03.2010
From: Sally

Subject: Re: seronegative rheumatoid arthritis

How awful to lose your Dad when you were in hospital Jill. It was something I was really worried about when I was in last summer. Found out how right I was to be worried, sadly, though didn't know at the time.
I know you are not posting for support :) but you really are an amazing woman. To go through so much and have time for everyone else. You are very special!
Sallyxx
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Date: 12.03.2010
From: jill

Subject: Re: seronegative rheumatoid arthritis

Sally dont make me blush, we r all here doing the same for one another, honestly, I cant do much else, so im happy to try and support the 'newbies; remember how bad that weas these forums existed, i want to give back and offer help to the ones that need help,. You Sally help Me everyday!...all of u do...so thanks for being a gr8 bunch x
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Date: 12.03.2010
From: sally

Subject: Re: seronegative rheumatoid arthritis

ditto!
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Date: 12.03.2010
From: Verity

Subject: Re: seronegative rheumatoid arthritis

Kayjay, I only ever have blood tests for my two weekly check ups for MTX. I think theyve just assumed that its gone from chronic juvenile arthritis to RA becasue of the state my bdy is in. Its all pretty obvious that its RA coz the majority of my joints are deformed.

Jill, Im guessing RA does affect all the joints and not just the small ones coz im having me hips replaced because of it. Every jojnt in my body is affected and theyve never suggested it could be anything other than RA.

I have an appointment next fri to discuss my hip op so I think I'll ask her what the official diagnosis is and what proof there is (although that isnt gonna change owt lol).

Take care girls keep ya chins up : ) xx
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Date: 12.03.2010
From: paul

Subject: Re: seronegative rheumatoid arthritis

RA definitely does not just effect the smaller joints it can be every joint, but as per the above posts everyone is different.

I've never had problems in my elbows but i know some that do but everywhere else has been hit by this disease, but mostly joints that i use all the time as in feet and hands.

Work becomes hard as i work in London and the commute of 1.5 hours each way on public transport takes its toll, i also work on networks and use a few computers, hardly get a break and can work 16 hour days easily. The problem i have is that i do not look ill, yet i know how i suffer. Only on mtx and folic acid at the moment and see the gastro surgeon on monday (now been asked to work though) as i have un-controllable heart burn.
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Date: 12.03.2010
From: Verity

Subject: Re: seronegative rheumatoid arthritis

Just to inform... my elbows have been badly affected by RA. I have about 20% movement in my right elbow (I think its bone growth and deformation) and my left elbow doesnt straighten completely anymore.

I dont think any joints can escape it to be honest!

xx
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Date: 12.03.2010
From: Paul

Subject: Re: seronegative rheumatoid arthritis

totally agree unfortunately.
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Date: 12.03.2010
From: jill

Subject: Re: seronegative rheumatoid arthritis

Hey Guys apologies,, god knows what i must have been reading on a website, forgive me for being soooooooooooooooo stoooopid, musta been tired lol, thas my excuse, of course it attacks all the joints, guess its same as Inflam artha...anyway...stay well guys x paul good luck with gastro surgeon, pls let me know how u get on, as im due to c one soon due to gall bladder and gastritis, so take care ok x
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Date: 12.03.2010
From: Sally

Subject: Re: seronegative rheumatoid arthritis

yep, agree with you all. Got it in shoulder, knee, ankle, wrist and finger. They kept telling me it wasn't inflammatory because I had it in the shoulder but then they said it was! Who knows what to believe!!
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Date: 12.03.2010
From: Minnie

Subject: Re: seronegative rheumatoid arthritis

Jill , boy you been through so much, i am so sorry to hear about this, I really wish they could find a cure for all of us, so let not give up hope. there is always hope.. Thank you all for your kinds words, I will miss my mom so much and I know she is with me..
as for DVLA jill I will contact monday and explain my dignoses has change, and I have change my Rhummy also, thats how I found out he did loads more test like mri. bone scan ect.. but my contdion is worst, my joints in my feet are damage now, and my figer is swollen, and i am trying to let this get me down, since every meds they put me on react to my body, so right now I am on nothing to trey to control this.. On 30 March I see him again, and he going to put me on new meds again.. I just hope something works soon..
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Date: 12.03.2010
From: jill

Subject: Re: seronegative rheumatoid arthritis

Minnie that is awful,how do u cope Not having decent painkillers, do u react bad to all of them? isnt there someting they can try U on ? cant imgagine being without painkillers, so sad that u r suffering./... Try stay positive, and let him know how bad U r..U need decent medication ASAP tc Jill xx
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Date: 14.03.2010
From: Minnie

Subject: Re: seronegative rheumatoid arthritis

Jill, My GP wont give me pain med, so I am going to see my Rhummy, and I will demand it, I should not be suffereing in this day and age.. I need pain relive. I am hoping they will try me on ne meds soon to help and control this.. I am so scared that I will end up in a wheel chair, or worst.
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Date: 14.03.2010
From: Jill

Subject: Re: seronegative rheumatoid arthritis

HI minnie, u r so so right,cant understand Y your GP wont give u dercent painkillers...have u been refered yet to your rhummy? reason im asking is becos it can take months to get an appointment, If your Gp has already refered u, mb u can ring the rhummys secretary to see where abouts u r on the waiting list, tel, her your gp wont give u painkillers, and that u r desperate, can u see a different GP, or change to a new one? I wld, most if not all Gps that know u have Arthritis will give u something until u see the Rhumatologist, My GP give me decent painkillers, my rhummy just agrees that im on the correct meds...at end of the day, the rhummy can suggest the type of meds U need,bvut udually the GP gives u them, but all that correspondence to Gp etc, will all take time, take someone with u, go back, see ur GP and demand some decent painkillers, by taking sdomeone with u, they can stick up for u.....let us know how u get on...tc Jill x
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Date: 14.03.2010
From: Verity

Subject: Re: seronegative rheumatoid arthritis

Thats ridiculous! If youre seeing a consultant then surely they cant turn you away! And why on earth would they not give you painkillers?!?! Thats stupid, definately see another GP if you can Minnie. They cant all deny you pain relief surely?!

xx
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Date: 14.03.2010
From: sally

Subject: Re: seronegative rheumatoid arthritis

Minnie, I don't know if this is applicable to you but when I first got ill last summer the GP's wouldn't give me any pain killers because I had very high (gamma gobulin) liver results. I was in extreme pain but had nothing for over a week and then after that only small doses. When I got into hospital they plied me with painkillers galore! GP's being over cautious I think. My liver results have gone down. Nobody has an explanation as to why they were so high. I think it was to do with the arthritis myself. Can't think of any other reason, I don't drink much, haven't got hepatitis so not much else to go on. My new, better, GP says they don't know everything. You can say that again lol! Make sure you get something for pain or a very good reason why not.
xx
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Date: 09.06.2018
From: akshayv

Subject: Re: seronegative rheumatoid arthritis

Suffering from plantar fasciitis for over a year made shopping for shoe a difficult task. I had read about Orthofeet and thought I would take a gamble. They are by far the BEST shoe for me. I had cleared my pain up over the winter months and was ready to get back into my walking routine. I bought my Orthofeet and absolutely LOVE them. Can walk three miles and have no pain afterwards. My walking shoes have turned into my working shoes. I will order another pair as soon as I have time to look and decide.
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