Sero-negative inflammatory arthritis

Starburst

It seems at least a couple of us on here have this, so please feel free to share your experiences.

My background: My official diagnosis is sero-negative inflammatory arthritis. I had a nuclear isotope bone scan which showed inflammation in the joints in my hands, wrists, feet and ankles. My ESR is high and my CRP is positive, however RF is negative, hence the sero-negative diagnosis.

My rheumatologist tells me that, at the moment, my arthritis is 'undifferentiated'. (He wrote that on a letter to my GP.) He suspects it may be the early stages of RA or lupus but all my lupus blood tests have come back negative. He told me that, in the future, my blood tests may indicate specifically which type I have. Has this been anyone else's experience? I read online that sero-negative arthritis is easier to treat and tends to be milder, is this true?

I keep thinking that because I'm sero-negative, it means my arthritis will magically go away and I'll make a full recovery. Am I in denial or just plain stupid?! :?

skezier

Hi Princess,

Sorry I can't help you but if you use the search box there are quite a few posts on the stereo-neg. I am sorry I don't think it goes away. A ((( ))) and take care, Cris

annie_mial

Hi Princess

Just wanted to say that I have had a sero-neg arthritic condition for more than 10 years now - the diagnosis was given on a 'symptom match' basis.
It would seem that I am now running another type of arthritis alongside the original one, but I am still sero-neg.

Annie

salamander

hi princess, I don't think it goes away either, am due to go on methotrexate for it in new year as it won't settle down. Also, I was in hospital for 10 days with an acute attack a few months ago, couldn't do a thing for myself and was in severe pain. Every joint they looked at was inflammed and I was like a pin cushion by the time I left with all the injections. I was as bad as anyone with RA and worse than some. Sorry to be so negative (no pun meant!) but you might be lucky and have mild symptoms. Everyone is different. It will be interesting to compare notes though so keep me posted. Sally

topgirl

I have sero-negative RA.....I found it very difficult to get a diagnosis.....My bloods seem completely fine( and always have been !)....I had to keep pushing for treatment and different scans as i was in terrible pain with my knee and foot...As well as extreme fatigue....
In the end I had an arthroscopy on my knee and basically they found lots of inflammation...A biopsy was done and samples of synovial fluid sent to the lab and hey ho inflammatory RA....
It took a year to get to this point......
Once i got to see a rheumatologist they then found it in both feet, hands and right knee....
Yes, it does tend to be milder but the R factor can appear at any time....
I am now on 6 Sulfasalazine tablets a day, Arcoxia and pain killers, BUT the good news is( and i cant believe im saying this!) nine months down the line I am feeling better and looking forward to going back to work soon....
Its a lot of trail and error with drugs but will get there....
I have been working with Athritis care to help produce a new ser-negative fact sheet...im sure they will send you a copy...
But if you want to ask me anything please feel free to message me....
best wishes
Kay
x

bailey27

Hi
I have been diagnosed with sero negative spondyloaropathy, which is a an inflammatory arthritis. I have it confirmend in my lower back and sacriolac joint. I am also getting probs with my knee and shoulder at the moment, strangely all on the left side of my body. My right side is perfect and I don't get any problems at all. I am justing getting over a huge flare up which has left me off work for 2 weeks and I am still not fully recovered so cannot say that ot isn't as bad. I have been having regular blood checks and my red blood count has been quite low and getting worse each time which is a side effect of the meds I'm on but also when you have high amounts of inflammation in your body it can make you anaemic (which have their own side effects of joint pain, fatigue, dizziness...) I have only found this out from researching the net today.
When I had this recent flare up the rheumy checked for the feritin levels and also for the inflammatory markers. I was in so much pain, the blood came back as feritin and haemaglobin low yet the inflammatory markers were normal. I am now on iron tablets which I am hoping will start to work very soon.
I have been told that sometimes this type of arthritis along with some others may go in time but is not likely. It is more important to get the drugs necessary to stop it spreading and causing damage, if it goes it goes, if not I'll just have to get use to it and try to get venough meds to control the pain.

fulwoodowl

I'm so glad to have read the last two replies. Not because I wish anybody the amount of pain I, and clerly you, are in, but because I've been told so many times my medical experts that the pain is all in my head. They kept getting negative results for me on Rheumatoid factor and CRP was 'within range'.

I too have had to push like mad to get them to understand that it's very real and ask the questions like 'why would I make this up?'. I'm finally on the start of MTX treatment and feeling the benefits already. I am a sports freak and for the past 2 years have been prevented from doing anything other than a bit of walking, which has driven me bonkers, I hope this treatment might allow me to start playing again, though I'm not building my hopes too much.

Has anyone else had real problems with the workplace and colleagues. It seems that as I'm relatively young (31) and otherwise healthy looking, nobody either believes that I can have the condition, and that somehow I am to be despised. I've found the reaction of my HR and other colleagues to be as hard to take as the pain itself. And all because I try and stay at work and not go off sick, crazy!!

Anyobody else's experiences would be interesting to read.

Bye for now, Steve

bailey27

fulwoodowl wrote:

I'm so glad to have read the last two replies. Not because I wish anybody the amount of pain I, and clerly you, are in, but because I've been told so many times my medical experts that the pain is all in my head. They kept getting negative results for me on Rheumatoid factor and CRP was 'within range'.

I too have had to push like mad to get them to understand that it's very real and ask the questions like 'why would I make this up?'. I'm finally on the start of MTX treatment and feeling the benefits already. I am a sports freak and for the past 2 years have been prevented from doing anything other than a bit of walking, which has driven me bonkers, I hope this treatment might allow me to start playing again, though I'm not building my hopes too much.

Has anyone else had real problems with the workplace and colleagues. It seems that as I'm relatively young (31) and otherwise healthy looking, nobody either believes that I can have the condition, and that somehow I am to be despised. I've found the reaction of my HR and other colleagues to be as hard to take as the pain itself. And all because I try and stay at work and not go off sick, crazy!!

Anyobody else's experiences would be interesting to read.

Bye for now, Steve

Hi, you may want to look at a topic I started 'just a rant' last week. I am in a very similar position to you, similar age and have this 'thing' going on which I am finding difficult to come to terms with let alone friends and team mates. I have always played competitive sports from the age of 8 from football, martial arta marathon running... I am currently unable to do anything apart fron walk the dogg which even then often gives me painful hips and back for the resat of the day. I am currently invollved in a sport which needs 100% focus and dedication to training and my team mates and coach just doesn't understand what I am going through. They have often told me that I am not fit enough as I often need to stop due to fatigue, but that is more because I am having a flare up and still try to exercise. I am just getting over recent flare up and still cannot train. It is doing my head in as next year me and my coach had intended stepping me up a level and possibly becoming one of the best athletes in my chosen sport in the country. Having trained for years to get where I am I am absoluely gutted this has struck me this year and often have days where I am totally depressed. I think you'd benefit from my last topic 'just a rant' as some of the advice I received may help you somewhat.

woodbon

Hi, I'm sorry that you have RA sero neg or not, but at least you know, I suppose that helps, but I'm not too sure that it solves much! :shock: You have a reason, now for all the pain you suffer and a label that you can tell anyone who asks (Dwpetc) what you've got. I hope they soon sort out some medicaition that will help you to feel better. Love Sue

topgirl

Just a thought....
Bit strange this....
I too was very sporty before I became poorly....
I ran 5 miles , 3 times a week and spent at leat every other night at the gym....
I seem to hear a lot about very sporty people getting sero-negative RA....does make me wonder if there is a link......
x

Starburst

This thread has been interesting. I used to be extremely active. I wouldn't call myself sporty at all but I was active. I loved walking my dog through the fields, went the gym, loved swimming, went to dance classes etc. Now, even making the 10 minute walk to work fills me with dread, especially if it's cold.

I was curious, those who were diagnosed with sero-negative arthritis, did you have scans and x-rays to confirm the diagnosis?

salamander

princess01 wrote:

This thread has been interesting. I used to be extremely active. I wouldn't call myself sporty at all but I was active. I loved walking my dog through the fields, went the gym, loved swimming, went to dance classes etc. Now, even making the 10 minute walk to work fills me with dread, especially if it's cold.

I was curious, those who were diagnosed with sero-negative arthritis, did you have scans and x-rays to confirm the diagnosis?

I had scans and x-rays. they could tell my joints were inflammed, some were aspirated and injected with steroids. I couldn't move when I was admitted to hospital and inflammatory markers were up but no RF or CRP. After several months my consultant has come to the conclusion it is not viral simply because it hasn't gone away. I have been told from the medics I deal with that the course of the disease is the same as ra , so same treatment and management. Maybe there is a difference with some sero -ve but it seems I, at least, am being treated as for RA at the moment.

When I say I couldn't do anything, I mean couldn't butter a piece of toast, could hardly walk, couldn't dress myself, get out of bed, get off the loo. It was extreme so not entirely sure what is meant by 'milder' than RA. There is nothing mild about what I've been going through and surely it depends entirely on the individual's experience?

Like many of the peeps making above posts, I was very active too, with an allotment, walking everyday, making very large paintings - all of which have been severely curtailed. Have no idea if there is a connection or whether it just hits you harder when you normally lead a very active life. Am sure there are lots of people not so active that have been badly affected by this illness.

Starburst

sally36 wrote:

There is nothing mild about what I've been going through and surely it depends entirely on the individual's experience?

I don't know if that's true, it's just something I read and who knows what's true and what's not on the internet?! It sounds like your experience has been horrible. Mine too.

bailey27

princess01 wrote:

This thread has been interesting. I used to be extremely active. I wouldn't call myself sporty at all but I was active. I loved walking my dog through the fields, went the gym, loved swimming, went to dance classes etc. Now, even making the 10 minute walk to work fills me with dread, especially if it's cold.

I was curious, those who were diagnosed with sero-negative arthritis, did you have scans and x-rays to confirm the diagnosis?

Hi
I had xrays and mri scan of hips and lower back. It showed inflammation but my blood came back normal.

annie_mial

princess01 wrote:

This thread has been interesting. I used to be extremely active. I wouldn't call myself sporty at all but I was active. I loved walking my dog through the fields, went the gym, loved swimming, went to dance classes etc. Now, even making the 10 minute walk to work fills me with dread, especially if it's cold.

I was curious, those who were diagnosed with sero-negative arthritis, did you have scans and x-rays to confirm the diagnosis?

I've found this thread very interesting, too. Until I was hit by the dreaded arthur, my hobby was ballroom dancing and I danced at international competition level. The last time I set foot on a dance floor was 8 years ago and I've accepted now that I never will again - I only lasted about 10 minutes then.
Perhaps it was made easier for me because I was in my 50's when it first struck - I would have had to accept some limits anyway because I was getting older
I'm currently in my second round of tests, scans, x-rays, etc, etc, but don't expect any kind of definite diagnosis for some weeks. The first lot showed nothing except a little joint damage, but that was nearly 10 years ago now.
I've also always walked a great deal too. Perhaps it does target the more active? Not sure, maybe someone will come along and tell us they weren't particularly active when it hit!

Annie

bailey27

I am very curious to find out whether it does effect the more active. I cant remember ever having a season off of a particular sport since I was about 8 years old. I am now 29 and often can barely move so it is a huge 'culture shock' if that is the right phrase. Going from being active and playing sports almost everyday to doing barely anything is quite hard to get use to.

topgirl

princess01 wrote:

This thread has been interesting. I used to be extremely active. I wouldn't call myself sporty at all but I was active. I loved walking my dog through the fields, went the gym, loved swimming, went to dance classes etc. Now, even making the 10 minute walk to work fills me with dread, especially if it's cold.

I was curious, those who were diagnosed with sero-negative arthritis, did you have scans and x-rays to confirm the diagnosis?

Yes, X rays to begin with ( showed nothing)... A full body bone scan( the one where you have dye in you) showed up problems with my skull :shock:
MRI which showed up problems with my knee which prompted them to go into my knee to do a biopsy...( the result was In arthritis...)
I then got refered to a Rhumy who did lots more xrays which as well as my knee confirmed it was also in both hands and feet...
my right foot is now more painful then my knee...and i now see a poditrist who has been a great help.....
Keep pushing the docs.....Sero- negative is much harder to diagnois.....

topgirl

bailey27 wrote:

I am very curious to find out whether it does effect the more active. I cant remember ever having a season off of a particular sport since I was about 8 years old. I am now 29 and often can barely move so it is a huge 'culture shock' if that is the right phrase. Going from being active and playing sports almost everyday to doing barely anything is quite hard to get use to.

I agree....it can also make you very low .... I also found some people( people who know nothing about the condition) blamed me for pushing myself too hard at the gym.. :shock:

Starburst

topgirl wrote:

Yes, X rays to begin with ( showed nothing)... A full body bone scan( the one where you have dye in you) showed up problems with my skull :shock:
MRI which showed up problems with my knee which prompted them to go into my knee to do a biopsy...( the result was In arthritis...)
I then got refered to a Rhumy who did lots more xrays which as well as my knee confirmed it was also in both hands and feet...
my right foot is now more painful then my knee...and i now see a poditrist who has been a great help.....
Keep pushing the docs.....Sero- negative is much harder to diagnois.....

I'm so glad I have the rheumy I do because I don't think it would have got the diagnosis without it. The first rheumy I saw basically called me a hypochondriac. :roll: I had the same sort of scan as you, which showed a lot of inflammation in the joints in my feet, ankles, hands and wrists. I'm supposed to have an MRI of my right ankle (the worst one) and x-rays of my hands and feet but it hasn't been organised yet.

salamander

princess01 wrote:

sally36 wrote:

There is nothing mild about what I've been going through and surely it depends entirely on the individual's experience?

I don't know if that's true, it's just something I read and who knows what's true and what's not on the internet?! It sounds like your experience has been horrible. Mine too.

I don't know what's true either! It seems everyone has a different experience and I'm sorry to hear you have had a horrible one too.
Hope things get better for you (and me lol). Anyway, best of luck to you. Am sure we will talk again. S

salamander

annie_mial wrote:

princess01 wrote:

This thread has been interesting. I used to be extremely active. I wouldn't call myself sporty at all but I was active. I loved walking my dog through the fields, went the gym, loved swimming, went to dance classes etc. Now, even making the 10 minute walk to work fills me with dread, especially if it's cold.

I was curious, those who were diagnosed with sero-negative arthritis, did you have scans and x-rays to confirm the diagnosis?

I've found this thread very interesting, too. Until I was hit by the dreaded arthur, my hobby was ballroom dancing and I danced at international competition level. The last time I set foot on a dance floor was 8 years ago and I've accepted now that I never will again - I only lasted about 10 minutes then.
Perhaps it was made easier for me because I was in my 50's when it first struck - I would have had to accept some limits anyway because I was getting older
I'm currently in my second round of tests, scans, x-rays, etc, etc, but don't expect any kind of definite diagnosis for some weeks. The first lot showed nothing except a little joint damage, but that was nearly 10 years ago now.
I've also always walked a great deal too. Perhaps it does target the more active? Not sure, maybe someone will come along and tell us they weren't particularly active when it hit!

Annie

Annie! In your fifties! That's nothing. I'm in my fifties too but certainly don't expect to lose my mobility at this age. All my friends are fit and active, I'm the only one with problems. Even my mother in her late seventies was totally frustrated with her lack of mobility (she had osteo) and she never stopped trying to do things. It's way too early to think that about yourself. As to the tests and scans etc. I hope they help with a diagnosis. all the best, S

annie_mial

Hi Sally, thanks for the cheering reply. I'm 65 now, and really no spring chicken, but don't tell anyone!

My mother was 88 when, sadly, she died last year. Up until the last few months she was able to run rings round me. When she came to stay she would walk me off my feet and shop me till I dropped!
But when we got back home she would turn into 'Mum' again and look after me and pamper me.

I was very down and suffered depression for a long time, it took me years to accept that I had a new 'normal' existence very different from the old 'normal' me.
Happily for me I have now adjusted and found other hobbies pursuits to fill my time. Although I'm struggling just now, I have a part time job which I love and will be very sorry to leave in the Spring.
We are moving house then so that we are nearer to our daughter.
For some reason, she's very happy about this!

Annie

salamander

annie_mial wrote:

Hi Sally, thanks for the cheering reply. I'm 65 now, and really no spring chicken, but don't tell anyone!

My mother was 88 when, sadly, she died last year. Up until the last few months she was able to run rings round me. When she came to stay she would walk me off my feet and shop me till I dropped!
But when we got back home she would turn into 'Mum' again and look after me and pamper me.

I was very down and suffered depression for a long time, it took me years to accept that I had a new 'normal' existence very different from the old 'normal' me.
Happily for me I have now adjusted and found other hobbies pursuits to fill my time. Although I'm struggling just now, I have a part time job which I love and will be very sorry to leave in the Spring.
We are moving house then so that we are nearer to our daughter.
For some reason, she's very happy about this!

Annie

Hi annie, sounds as if you have had a very tough time. I don't think it is easy for anyone. My mum died very recently and being ill myself at the same time has been hard. When I think how she struggled with such limited mobility it makes me very sad. She had osteo very badly, she used to be a wonderful cook but could hardly do anythng in the last couple of years but she did manage and never stopped planning and dreaming. I have to remember her when I am feeling sorry for myself!

stepdeb

sally36 wrote:

princess01 wrote:

This thread has been interesting. I used to be extremely active. I wouldn't call myself sporty at all but I was active. I loved walking my dog through the fields, went the gym, loved swimming, went to dance classes etc. Now, even making the 10 minute walk to work fills me with dread, especially if it's cold.

I was curious, those who were diagnosed with sero-negative arthritis, did you have scans and x-rays to confirm the diagnosis?

I had scans and x-rays. they could tell my joints were inflammed, some were aspirated and injected with steroids. I couldn't move when I was admitted to hospital and inflammatory markers were up but no RF or CRP. After several months my consultant has come to the conclusion it is not viral simply because it hasn't gone away. I have been told from the medics I deal with that the course of the disease is the same as ra , so same treatment and management. Maybe there is a difference with some sero -ve but it seems I, at least, am being treated as for RA at the moment.

When I say I couldn't do anything, I mean couldn't butter a piece of toast, could hardly walk, couldn't dress myself, get out of bed, get off the loo. It was extreme so not entirely sure what is meant by 'milder' than RA. There is nothing mild about what I've been going through and surely it depends entirely on the individual's experience?

Like many of the peeps making above posts, I was very active too, with an allotment, walking everyday, making very large paintings - all of which have been severely curtailed. Have no idea if there is a connection or whether it just hits you harder when you normally lead a very active life. Am sure there are lots of people not so active that have been badly affected by this illness.

Hi All,
I was originally diagnosed with Reative arthritis. It is now sero-negative inflammatory arthritis and I was in agonising pain for the first 3 months (from April this year). I have had numerous tests and x-rays and now been told it is chronic. I still have high ESR and CRP markers and still have problems getting around as I can't bend my right leg and have pain in toes and other joints.

Several of you ask if this affects active or sporty people. I would like to think I was - but am not. I had been fit several years ago but have had enormous stress over the last year.

I had a second opinion yesterday and was given so much more information than my first rheumy. He thinks I could now have psoriac arthritis even though I do not have psoriasis - just hope that if this is the case, I don't go onto get it! Will be seeing him again next year and hope that he will come up with something more definitive! Sometimes having a diagnosis can help so that you know what you are dealing with?

salamander

stepdeb wrote:

sally36 wrote:

princess01 wrote:

This thread has been interesting. I used to be extremely active. I wouldn't call myself sporty at all but I was active. I loved walking my dog through the fields, went the gym, loved swimming, went to dance classes etc. Now, even making the 10 minute walk to work fills me with dread, especially if it's cold.

I was curious, those who were diagnosed with sero-negative arthritis, did you have scans and x-rays to confirm the diagnosis?

I had scans and x-rays. they could tell my joints were inflammed, some were aspirated and injected with steroids. I couldn't move when I was admitted to hospital and inflammatory markers were up but no RF or CRP. After several months my consultant has come to the conclusion it is not viral simply because it hasn't gone away. I have been told from the medics I deal with that the course of the disease is the same as ra , so same treatment and management. Maybe there is a difference with some sero -ve but it seems I, at least, am being treated as for RA at the moment.

When I say I couldn't do anything, I mean couldn't butter a piece of toast, could hardly walk, couldn't dress myself, get out of bed, get off the loo. It was extreme so not entirely sure what is meant by 'milder' than RA. There is nothing mild about what I've been going through and surely it depends entirely on the individual's experience?

Like many of the peeps making above posts, I was very active too, with an allotment, walking everyday, making very large paintings - all of which have been severely curtailed. Have no idea if there is a connection or whether it just hits you harder when you normally lead a very active life. Am sure there are lots of people not so active that have been badly affected by this illness.

Hi All,
I was originally diagnosed with Reative arthritis. It is now sero-negative inflammatory arthritis and I was in agonising pain for the first 3 months (from April this year). I have had numerous tests and x-rays and now been told it is chronic. I still have high ESR and CRP markers and still have problems getting around as I can't bend my right leg and have pain in toes and other joints.

Several of you ask if this affects active or sporty people. I would like to think I was - but am not. I had been fit several years ago but have had enormous stress over the last year.

I had a second opinion yesterday and was given so much more information than my first rheumy. He thinks I could now have psoriac arthritis even though I do not have psoriasis - just hope that if this is the case, I don't go onto get it! Will be seeing him again next year and hope that he will come up with something more definitive! Sometimes having a diagnosis can help so that you know what you are dealing with?

I know what you mean. It's hard to make sense of things if you don't have a diagnosis. They thought my was viral arthritis to begin with, until it didn't go away! Out of interest, why did they think it was psoriac?

stepdeb

sally36 wrote:

stepdeb wrote:

sally36 wrote:

I had scans and x-rays. they could tell my joints were inflammed, some were aspirated and injected with steroids. I couldn't move when I was admitted to hospital and inflammatory markers were up but no RF or CRP. After several months my consultant has come to the conclusion it is not viral simply because it hasn't gone away. I have been told from the medics I deal with that the course of the disease is the same as ra , so same treatment and management. Maybe there is a difference with some sero -ve but it seems I, at least, am being treated as for RA at the moment.

When I say I couldn't do anything, I mean couldn't butter a piece of toast, could hardly walk, couldn't dress myself, get out of bed, get off the loo. It was extreme so not entirely sure what is meant by 'milder' than RA. There is nothing mild about what I've been going through and surely it depends entirely on the individual's experience?

Like many of the peeps making above posts, I was very active too, with an allotment, walking everyday, making very large paintings - all of which have been severely curtailed. Have no idea if there is a connection or whether it just hits you harder when you normally lead a very active life. Am sure there are lots of people not so active that have been badly affected by this illness.

Hi All,
I was originally diagnosed with Reative arthritis. It is now sero-negative inflammatory arthritis and I was in agonising pain for the first 3 months (from April this year). I have had numerous tests and x-rays and now been told it is chronic. I still have high ESR and CRP markers and still have problems getting around as I can't bend my right leg and have pain in toes and other joints.

Several of you ask if this affects active or sporty people. I would like to think I was - but am not. I had been fit several years ago but have had enormous stress over the last year.

I had a second opinion yesterday and was given so much more information than my first rheumy. He thinks I could now have psoriac arthritis even though I do not have psoriasis - just hope that if this is the case, I don't go onto get it! Will be seeing him again next year and hope that he will come up with something more definitive! Sometimes having a diagnosis can help so that you know what you are dealing with?

I know what you mean. It's hard to make sense of things if you don't have a diagnosis. They thought my was viral arthritis to begin with, until it didn't go away! Out of interest, why did they think it was psoriac?

Hi Sally,

He doesn't know for sure but thinks it may be psoriac because it is affecting 3 big joints in my legs and the toes. It has gone from reactive now because it has gone on too long. I am hoping to have some more tests in the new year when I see the new consultant. I have given up trying to find an alternative/s to help and feel I will have to go on mxt again as I don't want to damage my joints.

Before this happened I would never have imagined how painful arthritis is. I now that when people have said they had it, I would feel for them, but now can totally understand!! I couldn't do anything for the first few months and even moving slightly caused intense pain. Thankfully that pain has gone. I had injections in 2 of my joints and that helped the swelling and pain. I am still in pain and very stiff (another indicator that it may be psoriac apparently), but nothing in comparison to months ago.

Debbie