Zero negative RA: Hi, wondered how common it is for... - NRAS

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Zero negative RA

Hi, wondered how common it is for people with zero neg RA to be able to come off meds and stay in remission? My doc says there’s a big difference between zero neg and pos RA in that pos RA is chronic and for life, whilst neg can be put into remission and stay away? This goes against what I’ve read online which mostly says zero neg usually becomes positive over time, and continuous medication is necessary. Any thoughts? Anyone with zero neg diagnosis who has managed to come off meds? Thanks!

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I'm neg and my rheumy says it's an unknown, but says if I want to wean off meds I can try but he said it's not successful and I would go back to square one, but it was up to me. I'm not sure that is totally true as I've read on here that people have managed to do it. I'm not brave enough to try as I was so unwell and just starting to get a bit of my life back with the cocktail of meds and it's nearly 3 years since I was diagnosed. Hope you come to a dicision that suits you.

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I was originally seronegative when diagnosed 32 years ago, and was for 13 years. Then I became Seropositive. I've also heard this can work in reverse. I took the meds all the time when seroneg and still had flares.

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Positive to negative?

That would allow for the possibility for some to go into remission, if only for even a short time.

I wonder, though, if it only occurs for those, like yourself, that began negative, turned positive, then reverted back to negative?

A small ray of hope, perhaps?

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The way I understand it is seropositive means you are creating more of the serious antibodies, such as RH Factor and/or anti-ccps, to attack your joints. If you're seronegative, you don't have these. Doesn't mean you can't develop them though. I started out with a normal RH factor and six months later I was at a high level

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RH as in Rhesus?

I'm fairly new to all this abbreviated terminology and trying to tread water with what's what.

Initially, I read it as RF, but saw you used it twice, so tbought l'd ask for clarification.

Thanks.

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rheumatoid factor. not RH factor. read it in context and it's easy to figure out.

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Being new to all this, I had no idea what the context actually was, particularly as you compounded your mistake, thereby opening a fruitless route of enquiry.

This made no sense, whatsover, which was why I requested clarification.

Thank you for clarifying you made a mistake not just once, but twice and now that I can see where you made those mistakes I can allow for that, thus putting your comment into context, replacing your two mistakes with the correct terms.

Obliged for your elucidation. Lol.

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A lot of the literature does make this distinction, but there has been very little long term research to show that this is actually the case. And the stories on here show enormous variation!

One study I found is linked below. Small, only 250 people, but interesting as they focused on seropos & seroneg. The overall conclusion does seem to be that seronegative RA is NOT a benign type of RA. They say that people with sero-neg RA have more active disease, but that could be because they tend to be diagnosed later as without positive antibodies it is not clear cut. However they respond better to drugs, so the end result between the two groups was similar after 2 years.

q.nlm.nih.gov/pmc/articles/...

So personally I think that how you progress is much more individual than your antibody staus.

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Just tried the link provided, through this site's redirect and independently of it.

No luck with either.

Maybe just me?

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No, copied it wrong...

ncbi.nlm.nih.gov/pmc/articl...

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Much obliged helixhelix!

I've saved it for later reading.

My intent is to get through my last few notifications, grab some shut eye then I'll have a decko at the article..

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Sero negative RD, can be every bit as damaging as sero positive, it generally lasts a life time as does sero positive, and in some ways can be more damaging as people with seronegative RD are regularly not believed and /or misdiagnosed or given the label of being depressed.

Medical training and literature in the past made the distinction you mention. What has changed is medical opinion based on scientific evidence. However, undergraduate medical training for all musculo skeletal conditions and in particular conditions such as RD remains inadequate, and there are still many older Drs around who were trained even before methotrexate was administered to RD patients. Much misinformation is still around.

It is now accepted that what we call RA or RD is a collection of many diseases, all of which can present differently in different people. We are not all the same, nor have the same disease. Autoimmune disease is particularly complex, even for the experts.

I'm not a Dr.

Personally I think the advice you have been given is incorrect and lacks insight into the complexity and nature of RD.

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"As a rule patients who are seropositive for RF and/or anti-CCP are more likely to have more severe RA but neither of these tests can accurately predict the future course of the disease in an individual patient." nras.org.uk/seropositive-se...

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Yes, sero negative RD can be every bit as destructive as sero positive RD, no one knows how the disease will manifest itself or progress. Its not a competition, but thaankfully sero negative RD is being taken more seriously by the medical profession than in past times, when they relied RF, which is not a good measure of RD.

I think the NRAS page needs updated too.

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you may be right. "However, up to 20 percent of people with RA have a form of the disease that doesn’t show up in blood tests – seronegative rheumatoid arthritis. In the past, doctors thought that seronegative RA was a milder form of regular (seropositive) RA. It may be that patients with seronegative aren’t producing enough antibodies to show up in current blood tests. Recent studies show that seronegative RA is just as serious as the regular kind… and for some patients can be hard to treat." louisianaweekly.com/could-y...

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Unfortunately I seem to be in the more difficult to treat category. 4 DMARDs and 2 nd biologic later......

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Just been having a nosy at Teeside health authority.

Apparently it was NICE (in 2009) that decided RF tests were cheaper than antiCCP tests!

Says it all.

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No definitely not "as a rule" sero neg is just as painful and destructive & long lasting

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I had terrible erosion to my toes, knees and hands when I was seronegative. In spite of being on Sulphasalazine. Although my secondary Sjogren's syndrome is worse since I became seropositive, and I developed Rheumatoid Vasculitis too. :-O

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Mm, when you say that seronegative RD can be every bit as damaging as seropositive, do you know if damage to heart or lungs is included? I'm not 100% about this, but think I can recall reading somewhere that organ damage is more common with seropositive.

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Yes would be the answer, but the information on sero positive RD can be conflicting and is ever changing. It can be difficult to find too, partially ignored in the past as not 'real ' RD.

It seems to me the older view of seronegative being the lesser of the 2 evils is now not accepted as a truism.

And, as said it can be more evasive to diagnose and treat, has a less certain outcome in that it can morph into eg. sero positive RD or psoriatic rheumatoid disease or aggressive RD with all the associated issues these bring. Even the age old , rheumatuc nodules only being found in sero positive RD ain't true, although quite rare in sero negative RD.

It begs the question what is sero negative RD ?

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Thanks Mm, there's nothing straightforward with this disease that's for sure! :-O

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Hi! I am serogenative and have been diagnosed with aggressive RA with nodules. It is rare I guess but it happens. I chuckle a bit when people say serogenative isnt as severe as seropositive is...because I have bone erosion and all the pain to goes with it. I have started on a biologic with methotrexate and hoping for positive results.

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yup. I have bone erosion too and have been so ill with sero negative RD. Its not a competition.....but I have two friends both sero positive, diagnosed quickly, seen quickly. MTX quickly doing well, back walking. No erosions.

I've been told I had tendonitis and headaches, was depressed, had delay after delay.....rubbish spouted at me ad nauseum, 4 DMARDs and 2 biologics later....still struggling.

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Possibly an entirely different disease?

If caught early enough maybe never developing into S+?

Cost effective just to stick to RF test?

They need a diagram to find their rectums?

Any and all of tbe above, but not necessarily in that order?

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It sounds very much like a different disease.

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I'm beginning to suspect it is and, oddly, think an answer to remission might lie, therein.

Sero neg can become sero pos...that's a given.

Sero pos, on rare occasions, I'm led to believe, can become sero neg.

Which begs the question can a neg become a pos, then revert back to neg, which allows for remission?

Or is it limited to just a straight one for the other?

Maybe something in one of the antiCCPs being triggered to higher or lower levels, initiating the switch either way from a neutral (the average non sufferer).

They, antiCCPs, are indicaters, but may also be triggers.

Tell Switzerland to bung my Nobel in the post, but registered, mind. Lol.

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I don't think remission is inked to being sero negative or positive. Active disease and remission occur in both.

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I've only read of sero negs going into remission on this this platform so far and one of them saying they'd heard of a sero pos in remission.

Not knew for certain, but only heard.

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Either can. It's not related to being pos or neg.

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I was diagnosed with R/A 3 years ago I am on methotrexate but last June I had a myocardial infarction and had a stent fitted ,I was told the R/A sero positive could have played it's part on my heart so needless to say its worrying times .

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I know how you feel. I was worried sick for months following a MI I had 15 years ago, a year or two after being diagnosed with seropositive RA. I asked the cardiologist if my RA was the cause, but he didn't think so as it was inactive at the time. I suspect that the NSAIDs I was taking around that time were the culprits - one of them, 'Vioxx', that I was taking not long before the MI was banned because of serious cardiac issues, which was a shame in a way as it was a very effective anti-inflammatory.

Having cardiac issues along with RA is a big worry and it goes without saying that we need to keep our RA under control as best we can. My inflammation has been all over the shop this past few years. Only the other week my GP phoned to tell me to get in touch with rheumy as he was concerned about high inflammatory markers showing up in a blood test...and I've had periods in the past where they've been a lot higher than that, which is obviously a worry, yet I haven't had any cardiac issues since the MI. Just hope I'm not tempting fate there! :-O

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🤞

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:-)

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Sero neg or not! I only know what happened to me - no meds given as RA was not diagnosed quick enough - if it had been in the bloods they'd have found it quicker! My arms ballooned right up and I was in agony on Morphine! First appointment with Rheumy he said no doubt it's RA - you are sero negative but clearly have RA. He said prognosis was slightly better as not in my blood but the disease was still progressive and incurable.

Methotrexate took 2 years to bring the swelling down to somewhere near normal, I still have pain, dreadful flares and weakness in both wrists, fingers, knees and ankles but I'm way better than I was!

I needed the DMARDs and couldn't cope without them. M x

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I was messed around for months before diagnosis with GP after GP spouting rubbish. Eventually a private physio wrote to them and I was referred to rheumatology. I was then messed around some more, told I was depressed. I'm not. I was eventually diagnosed by a second rheumatologist as sero negative RD. I'm now on biologics and have erosions.

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Anyone relying only on their GP for treatment for RD needs to request a referral to a rheumatologist immediately.

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Often the good folks out there don't know they need to see a rheumatologist. This is particularly true if they are sero negative.

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Over the years I have found myself reciting parrot fashion to various GPs information on all aspects of RD & the drugs we are prescribed....as explained to me by Consultant Rheumatologists.

I have been Sero+ since day one......so at least I didn’t have that hurdle to face.

Only last year a GP in my present GP practice asked if I had Rtx infusions monthly! The first thing mentioned in literature on Rtx for RD is that it should not normally be administered more frequently than every 24 weeks. It is rarely administered more frequently in exceptional RD cases.

But regular more frequent Rtx infusions is usually in a cocktail with other drugs....but that is for cancer treatment.

Watch, listen & learn is my mantra!

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Yes, last week my GP (in a phone call initiated by me regarding an incorrect prescription...again) stated that Benepali and Baricitinib where the same thing.

No I responded, one is a weekly injectable anti TNF-a, the other a small molecule JAK inhibitor, taken as a daily tablet. They have different modes of action with different possible side effects, which require careful monitoring.

But they are both biologics she replied ? (as a question).

I feel safe in her hands.

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Really?

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😂🤣

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👍👍👍

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Blimey ☹️

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That's worrying!

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Gone into my "Are you trying to KILL me?" file.

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Thanks all for your responses! I’m a bit of a strange case in that there is only one wrist affected - no other joints involved. No redness, swelling or even pain unless in certain positions. A little bit of fatigue now and again but nothing that stops me coping with work, family etc. However - I do have erosions in the wrist and restricted movement ( confirmed with MRI). This has been improved with steroid injection into wrist. Unsure if best to start methotrexate now or wait and see. Dr says it’s a difficult case..he’s uncertain if diagnosis is zero neg RA or psoriasis arthritis as only one joint involved, but both are treated with methotrexate apparently. Just need to decide if I start meds now as a precaution more than anything to stop it getting worse - although meds obviously not without risk either..don’t know what to do really..

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I started with only my left wrist affected for a whole year! I think if I’d had meds quicker it maybe wouldn’t have escalated so quickly to other areas but who knows. One things certain only the DMARDs helped me come back to a manageable pain level as I was in Agony and in a real bad position by the time I got to Rheumatology. M x

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I was the same with awful pain in the wrist.I had my wrist fused And i had to change jobs as i could not my job.Nothing else happened for a few years and then it hit me and i was diagnosed with very aggressive RA still not under control.I am sero positive but i think the wrist was the start. B

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Taking meds is a personal decision and no one is supposed to give advice on that. I've chosen not to take meds as a seropositive RA person. It's been 7 months since my symptoms first manifested and I chose to go the natural route. The disease hasn't ruined any of my joints - yet. I haven't had to deal with any side effects of medications. But if the pain and inflammation get out of control, then I might end up taking meds.

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Hi, you have to bear in mind though that it is also systemic and can affect more than your joints e.g heart and lungs, DMARD's give some protection for that.

I'm seropositive and so far no joint damage, as far as I know, but I'm concerned about heart and lungs as there is CV disease in my family.

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This is true. I'm keeping watch on my numbers. Everything is under control, great BP, normal cholesterol, normal everything, except for those nasty antibodies causing trouble. My mother had rheumatoid and I watched her health decline fast after being on methotrexate and prednisone. She got all kinds of infections and side effects, in and out of hospitals and she died a horrific death from the disease at a relatively young age. I know I'm taking chances, but my diet and lifestyle changes feel right. If I get to the point where I'm in too much pain, I'll consider DMARDs. Have you ever seen any stats on how many people experience remission on DMARDs? They are hard to come by. Do you have any side effects? Do the DMARDs work for you?

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I cannot function without medication. The brain fog is completely debilitating and along with the rheumatic all over body ache renders me immobile. Joint pain is secondary to the systemic issues. I have no choice but to take medication.

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Although I'm interested in other people's experience of RD it's not a 'one size fits all', it's different for everyone that has it so there is a lot of trial and error with the drugs. Therefore I haven't looked for statistics on remission. Methotrexate worked for me but I couldn't tolerate the side effects so it was stopped, however it's very successful for many people. I'm now on Hydroxychloroquine, no side effects, just have to be patient for it too work! Anyway, I hope the way you have decided to go works out well for you 😊👍

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I have completely the opposite attitude.I started Dmards immediately I was diagnosed 20+ years ago. I have very little joint damage and although like most people I have had my ups and downs with the drugs, I can honestly say I would not change a thing. I am now on a biological drug and lead as normal a life as most of my non-RD affected friends my age.

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I guess the experience of watching my mother deal with RA and the drugs put things in a different light for me.

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Every single person is different & has a different reaction to the drugs they are prescribed.

I don’t know how long ago you remember the symptoms your mother had...but put those memories out of your head...these days most drugs are well tolerated & there are so many to try, it’s very unusual not to find a drug that suits you.

So just look forward to your prescribed drugs working for you.

Worrying unnecessarily only makes the symptoms worse I’m afraid.

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No, thank you. I'll stay drug free for as long as possible. It's not different at all. Methotrexate is still the go-to. I took care of my mother, so I'm intimitately familar with her symptoms. Fat chance that you'll get treated with a biologic first, considering they cost about $60K a year. Who's worrying?

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As I said....that was your mother....it’s not you.

The way I looked at it ....without Dmards joint/organ damage just “happens” to a lot of people..I was worried that if I ignored my Rheumatologist’s advice I’d end up with both & once that had happened I’d really kick my self.

I gather you are in the US? I have a friend there who was diagnosed around the same time as me & she has been on Mtx for about 15 years now......& at nearly 80 she is doing really well........the drug has controlled her disease & she hasn’t needed to move on to Biologic drugs.

As I keep saying everybody has their own RD path to tread....I do hope you manage well......without the dreaded Dmards.

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I think I'm leaving this forum. It's full of negativity - no pun intended. Not what I'm interested in.

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That's a shame.... we're only trying to support each other through the trials of this awful disease. Some of us could not cope without the drugs or lead an independent life. I need them .... and having tried a few I'm so delighted I seem to have found one that works for me.

If you feel you don't need the drugs and can cope with out, lucky you, and that's your choice of course. Good luck.

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Sorry you feel that way......I think what you mean is you disagree with my choice to take the RD drugs, feel well & lead an almost pain free life.....well into my Dotage?

To me it feels win win & positive!

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You is on dat THC, innit? Lol.

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I’m Zero negative too! 👋 Hi!

Well it’s never for certain as each case is different. But generally negatives have it easier and the disease isn’t as aggressive. Some people can stay in remission for long periods and get off meds or never need meds to begin with. Others need to keep taking their meds forever but in any case both cases are for life, incurable but manageable. It could be worse😁😁😁

Currently my disease activity is low and I’m tapering off the meds slowly, that is a big shift for me as I was in bad shape before . Hope it continues

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I'm sero negative and completely disagree.

Sero negative is aggressive, debilitating and can be very evasive as outlined in all the responses above.

The literature and way sero negative RD has been treated by the medics thankfully is changing.

The view that seronegative is somehow not as real as sero positive has been rightly challenged in recent years.

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You actually prove the point that seronegative can be same or worse as seropositive because I'm seropositive and my symptoms aren't nearly as bad as yours.

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Having been diagnosed with seronegative RA in 2015 am into my third year of remission. Defined as no pain, no swelling, no fatigue, no flares. Slight stiffness in hands on waking, mild peripheral neuropathy in feet (though this may be unrelated to RA). I was initially put on prednisolone, naproxen and hydroxychloroquine (400mg daily). Now just take 1x200mg hydroxychloroquine tab every 5 days so basically 40mg p/d. Have annual check up with rheumy consultant and hands/feet X-ray. I never take remission for granted but long may it continue.

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Brilliant! Long may it stay that way for you🤞🏼

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I’m seronegative, diagnosed in 2013. I was in an awful state to start with, but am now relatively good. I’m on Methotrexate, hydroxychloroquine, Naproxen, frolic acid & omeprazole.

As I’ve been on 22.5mg MXT for years and relatively stable we have tried to reduce the amount. Twice this year I’ve reduced but after about 4 weeks on each occasion have been in agony again so I’m back to 22.5.

It has made me realise what a difference the drugs make to me, how horrendous I’d be without them.

We are all different, all react differently, all have Rheumy consultants and GPs with different views!

I trust my GP ( her mum has RD so she’s all clued up), and Rheumy team. By following their advice I am living a much better life.

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I'm sero negative. After trying various meds I was put on humira which was brilliant. However, after a few years I began to get ulcers on my legs and it was stopped. I haven't been on any meds other than co-dydramol when needed since then. I'm also no longer having regular appointments with Rheumy but can be referred back if I need to. I usually only take the co-dydramol an hour before my cardiac rehab classes as joints can become painful. I suppose you'd call it remission and the fact that I eventually reacted to the Humira meant I didn't need it any more.

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Hi I started out 20 years go diagnosed with sero negative RA or Psoriatic Arthritis. Started on Methotrexate then moved onto others before starting Biologics 3 years letter. Somewhere around then my RF changed to positive but no one told me as it made no difference to treatment. I am currently on Rituximab after others caused Pustular Psoriasis & then skin cancer & lung nodules. I can honestly say in 20 years I’ve not had a day without pain & cant imagine ever being without medication unfortunately x

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Jim I have it and tryed to lesson my meds and found I need them always but I have fibro to it makes life interesting

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I’m on mtx and leflunomide still but luckily I started on Dmards quite early. I worked for the NHS and recognised my symptoms so was referred to rheumatologist quickly. The early you start on mtx or other Dmards the better the outcome and that was true for me. It took 3 years to get everything sorted but without the drugs I would be back to square one. Dmards: disease modifying drugs.

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Thanks for all the responses - it’s amazing how different everyone’s experience is! I am already with a great Rheumatologist who I trust completely, and after meeting with him again yesterday we’ve come to the conclusion I will start metoject on a small dose (7.5mg) in next month or two. This is to keep anything developing any more and will be for 1 year initially followed by another mri. Will keep you all posted! Thanks again for all the advice! 😊

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Mmm not sure I agree. I’m s-negative . I’ve been suffering with symptoms for at least 15 years but my bloods were always good. Was referred to a rheumatologist 8 years ago who said I didn’t have RA as my bloods were good. Then I was referred again 3 years ago I was told that I was S - negative and misdiagnosed . So much damage done to my hands and feet if I’d been s- positive I would have been diagnosed sooner and not in this mess.

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