Sero-negative inflammatory arthritis

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  • salamander
    salamander NonActiveMember5yrs Posts: 1,906
    edited 30. Nov -0001, 00:00
    stepdeb wrote:
    sally36 wrote:
    stepdeb wrote:

    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

    Hi Debbie, sounds similar to me, they thought mine was viral. It seems very hard thing to diagnose unless you have RF factor.
    I know what you mean about the pain. My friends didn't understand until they saw me unable to walk, get out of a chair, etc.
    I hope you have a good response to the drugs.
    x
  • stepdeb
    stepdeb NonActiveMember5yrs Posts: 27
    edited 30. Nov -0001, 00:00
    Hi Debbie, sounds similar to me, they thought mine was viral. It seems very hard thing to diagnose unless you have RF factor.
    I know what you mean about the pain. My friends didn't understand until they saw me unable to walk, get out of a chair, etc.
    I hope you have a good response to the drugs.
    x[/quote]

    Thanks. If I do get a definitive diagnosis, I'll let you know!
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -0001, 00:00
    I was wondering, is inflammatory arthritis basically RA? My rheumy said it might show up in my bloods, in future, if it's definitley lupus or RA but I don't show many lupus symptoms and, from what I've read online, my symptoms are typical of RA. I know there are other types of inflammatory arthritis but mine's in my hands and feet too, which I know is very common with RA.
  • bailey27
    bailey27 NonActiveMember5yrs Posts: 689
    edited 30. Nov -0001, 00:00
    princess01 wrote:
    I was wondering, is inflammatory arthritis basically RA? My rheumy said it might show up in my bloods, in future, if it's definitley lupus or RA but I don't show many lupus symptoms and, from what I've read online, my symptoms are typical of RA. I know there are other types of inflammatory arthritis but mine's in my hands and feet too, which I know is very common with RA.

    I am curious to know this too.
    I have been told I have an inflammatory arthritis, sero-negative spondyloaropathy to be precise. I'm not sure what type etc.
    I have it for definate in back back and left hip, I am also having probems recently with my helft shoulder, left ankle and left knee.
    The right side of my is fine no rpobs at all.

    Is it also common to have this just on the one side of your body??
  • janie68
    janie68 NonActiveMember5yrs Posts: 1,186
    edited 30. Nov -0001, 00:00
    Hi

    I got told by my rheumy that RA is worse than inflammatory as it cN affect organs as well and tends to be more severe in joints and the damage also. However any kind of arthritis is bad enough for anyone!


    I think that's what he said, but that was a while ago and as you know the memory I swear gets affected too!!

    Janie
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -0001, 00:00
    janie68 wrote:
    Hi

    I got told by my rheumy that RA is worse than inflammatory as it cN affect organs as well and tends to be more severe in joints and the damage also. However any kind of arthritis is bad enough for anyone!


    I think that's what he said, but that was a while ago and as you know the memory I swear gets affected too!!

    Janie

    So, basically inflammatory arthritis = sero-negative RA ??
    Because, for me, if my RF was positive, it'd be RA.

    This is confusing!
  • stepdeb
    stepdeb NonActiveMember5yrs Posts: 27
    edited 30. Nov -0001, 00:00
    princess01 wrote:
    janie68 wrote:
    Hi

    I got told by my rheumy that RA is worse than inflammatory as it cN affect organs as well and tends to be more severe in joints and the damage also. However any kind of arthritis is bad enough for anyone!


    I think that's what he said, but that was a while ago and as you know the memory I swear gets affected too!!

    Janie

    So, basically inflammatory arthritis = sero-negative RA ??
    Because, for me, if my RF was positive, it'd be RA.

    This is confusing!

    I think some of the problems are that "arthritis" is a generic term so covers a multitude of symptoms. What I have seems to fit RA but is mainly in my lower body. I do have other autoimmune problems and the rheumy said that docs can't always be specific as there are so many varieties of arthritis. I am going to have a CCP test at some point which can give more information.

    It would be good to have some idea of what to expect, but guess for me, it is too early for that!

    Debbie x
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -0001, 00:00
    stepdeb wrote:
    princess01 wrote:
    janie68 wrote:
    Hi

    I got told by my rheumy that RA is worse than inflammatory as it cN affect organs as well and tends to be more severe in joints and the damage also. However any kind of arthritis is bad enough for anyone!


    I think that's what he said, but that was a while ago and as you know the memory I swear gets affected too!!

    Janie

    So, basically inflammatory arthritis = sero-negative RA ??
    Because, for me, if my RF was positive, it'd be RA.

    This is confusing!

    I think some of the problems are that "arthritis" is a generic term so covers a multitude of symptoms. What I have seems to fit RA but is mainly in my lower body. I do have other autoimmune problems and the rheumy said that docs can't always be specific as there are so many varieties of arthritis. I am going to have a CCP test at some point which can give more information.

    It would be good to have some idea of what to expect, but guess for me, it is too early for that!

    Debbie x

    Debbie, my rheumatologist also feels it's a bit too early to give a 100% conclusive answer. In me, it seems like RA because of where the inflammation is. I'm just impatient and want to research everything and feel like I can't because I don't know specifics. I'm still learning, I barely knew anything about arthritis before I was diagnosed and I'm trying to educate myself.
  • salamander
    salamander NonActiveMember5yrs Posts: 1,906
    edited 30. Nov -0001, 00:00
    Seem to be a lot of us out there with similar problems. I was told by my gp to definitely have methotrexate otherwise I could damage my joints badly. Also, what I don't understand is if peeps with inflammatory Arthritis (IA) can develop the RF in their blood, why wouldn't the prognosis of the disease be the same, ie damage organs etc.? I was told that IA can sometimes be RA but without RF in blood and it was just as serious a diagnosis. What have you all heard?
  • stepdeb
    stepdeb NonActiveMember5yrs Posts: 27
    edited 30. Nov -0001, 00:00
    sally36 wrote:
    Seem to be a lot of us out there with similar problems. I was told by my gp to definitely have methotrexate otherwise I could damage my joints badly. Also, what I don't understand is if peeps with inflammatory Arthritis (IA) can develop the RF in their blood, why wouldn't the prognosis of the disease be the same, ie damage organs etc.? I was told that IA can sometimes be RA but without RF in blood and it was just as serious a diagnosis. What have you all heard?

    Hi Sally,
    I was told exactly the same by first rheumy who scared me into taking mxt (although not taking yet). Of course I don't want to damage joints, but do want to get as much info as possible before making decision. After seeing second consultant, he said that mxt doesn't have so many side effects - it's the arthritis that causes the symptoms, not the mxt (except side effect of nausea). If I can get gp to prescribe mxt by injection then I'll try it again as he said that injection should be more effective. I've been told many different things - the problem is that they don't know!!
    Talking to gp this morning, so hope to get some more info - will let you know if hear anything else........ :)
    Debbie
  • salamander
    salamander NonActiveMember5yrs Posts: 1,906
    edited 30. Nov -0001, 00:00
    stepdeb wrote:
    sally36 wrote:
    Seem to be a lot of us out there with similar problems. I was told by my gp to definitely have methotrexate otherwise I could damage my joints badly. Also, what I don't understand is if peeps with inflammatory Arthritis (IA) can develop the RF in their blood, why wouldn't the prognosis of the disease be the same, ie damage organs etc.? I was told that IA can sometimes be RA but without RF in blood and it was just as serious a diagnosis. What have you all heard?

    Hi Sally,
    I was told exactly the same by first rheumy who scared me into taking mxt (although not taking yet). Of course I don't want to damage joints, but do want to get as much info as possible before making decision. After seeing second consultant, he said that mxt doesn't have so many side effects - it's the arthritis that causes the symptoms, not the mxt (except side effect of nausea). If I can get gp to prescribe mxt by injection then I'll try it again as he said that injection should be more effective. I've been told many different things - the problem is that they don't know!!
    Talking to gp this morning, so hope to get some more info - will let you know if hear anything else........ :)
    Debbie

    Hi Debbie, that 's interesting. Would be great if you let me know. I am seeing my GP tomorrow. I've heard the injections are better so might ask for that if I can. I've got an added problem of a fatty liver from steroids, apparently mtx can cause that too so what rheumy to factor that in but am not seeing him til Feb.
    sally
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -0001, 00:00
    sally36 wrote:
    Seem to be a lot of us out there with similar problems. I was told by my gp to definitely have methotrexate otherwise I could damage my joints badly. Also, what I don't understand is if peeps with inflammatory Arthritis (IA) can develop the RF in their blood, why wouldn't the prognosis of the disease be the same, ie damage organs etc.? I was told that IA can sometimes be RA but without RF in blood and it was just as serious a diagnosis. What have you all heard?

    What you've just said is exactly what I've been wondering and I have no anwer either! :?
  • stepdeb
    stepdeb NonActiveMember5yrs Posts: 27
    edited 30. Nov -0001, 00:00
    Hi Sally,
    I was told exactly the same by first rheumy who scared me into taking mxt (although not taking yet). Of course I don't want to damage joints, but do want to get as much info as possible before making decision. After seeing second consultant, he said that mxt doesn't have so many side effects - it's the arthritis that causes the symptoms, not the mxt (except side effect of nausea). If I can get gp to prescribe mxt by injection then I'll try it again as he said that injection should be more effective. I've been told many different things - the problem is that they don't know!!
    Talking to gp this morning, so hope to get some more info - will let you know if hear anything else........ :)
    Debbie

    Hi Debbie, that 's interesting. Would be great if you let me know. I am seeing my GP tomorrow. I've heard the injections are better so might ask for that if I can. I've got an added problem of a fatty liver from steroids, apparently mtx can cause that too so what rheumy to factor that in but am not seeing him til Feb.
    sally

    Hi Sally and Princess and everyone!
    Spoke to GP this morning and she can't prescribe me mxt injections until she gets a letter from second rheumy (even though have been prescribed tablets in past - don't understand it). Anyway, no further forward as yet. I think both injections and tablets are effective but get into the body differently so affects it differently. As I already take injections for diabetes taking another won't be a problem!
    Sally - as for your liver, the rheumy told me that mxt will not cause more damage. If you have a fatty liver due to steroids, I would imagine that hopefully it may repair itself - however, I am not a medic of course, so don't know. As you know if you go on it, they will monitor you closely and if you show any early signs of liver damage then you could come off it and perhaps be prescribed something else such as Leflunomide?
    Can you phone your hospital and ask to see rheumy sooner than Feb and say you are having problems? There may be an earlier cancellation? However, knowing what the NHS is like - that would be a miracle :)
    I don't know anything about RA affecting internal organs. Is there someone on this board that knows the answer to this?????
    Debbie x
  • woodbon
    woodbon NonActiveMember5yrs Posts: 4,969
    edited 30. Nov -0001, 00:00
    HI, I have osteo arthritis, but I have read that one of the things that rheummys look for when diagnosing ra is pain in the same joint on both sides of the body, like both knees sore. Ostio is damaged joints and it is degenertive. Some people call it 'wear and tear', but these days the really top docs are looking at Osteo as being a disease which causes the wear and tear to happen much earlier than in others. It is something, too, that tends to run in families, my mothers OA followed a similar pattern to mine. Neck and lumber spine, then hands.

    I've read that Sero negative RA referred to as a milder form of ra, but that is becoming an out of date view, also people with rheumtiod Sero neg often become just rheumitiod after a while.

    I the end, the main thing for us, the sufferers is that it is pain we all feel and that is the thing that takes over your life. I don't get the rheumitiod fatgue but oa makes you tired and depressed too, as I don't sleep as well as I did and pain with the loss of the things I used to do is depressing.

    Basically I think we are all in different cabins of the same rotten old boat!!! :shock: :wink: LOve Sue
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -0001, 00:00
    woodbon wrote:
    HI, I have osteo arthritis, but I have read that one of the things that rheummys look for when diagnosing ra is pain in the same joint on both sides of the body, like both knees sore. Ostio is damaged joints and it is degenertive. Some people call it 'wear and tear', but these days the really top docs are looking at Osteo as being a disease which causes the wear and tear to happen much earlier than in others. It is something, too, that tends to run in families, my mothers OA followed a similar pattern to mine. Neck and lumber spine, then hands.

    I've read that Sero negative RA referred to as a milder form of ra, but that is becoming an out of date view, also people with rheumtiod Sero neg often become just rheumitiod after a while.

    I the end, the main thing for us, the sufferers is that it is pain we all feel and that is the thing that takes over your life. I don't get the rheumitiod fatgue but oa makes you tired and depressed too, as I don't sleep as well as I did and pain with the loss of the things I used to do is depressing.

    Basically I think we are all in different cabins of the same rotten old boat!!! :shock: :wink: LOve Sue

    *Applauds you*

    That was a great post. :D
    From my perspective, I want to know because when I research info etc, I never find much for inflammatory arthritis but plenty on RA. I'm being treated as if it's RA, so I spose it's useful to read around that subject too.
  • salamander
    salamander NonActiveMember5yrs Posts: 1,906
    edited 30. Nov -0001, 00:00
    woodbon wrote:
    HI, I have osteo arthritis, but I have read that one of the things that rheummys look for when diagnosing ra is pain in the same joint on both sides of the body, like both knees sore. Ostio is damaged joints and it is degenertive. Some people call it 'wear and tear', but these days the really top docs are looking at Osteo as being a disease which causes the wear and tear to happen much earlier than in others. It is something, too, that tends to run in families, my mothers OA followed a similar pattern to mine. Neck and lumber spine, then hands.

    I've read that Sero negative RA referred to as a milder form of ra, but that is becoming an out of date view, also people with rheumtiod Sero neg often become just rheumitiod after a while.

    I the end, the main thing for us, the sufferers is that it is pain we all feel and that is the thing that takes over your life. I don't get the rheumitiod fatgue but oa makes you tired and depressed too, as I don't sleep as well as I did and pain with the loss of the things I used to do is depressing.

    Basically I think we are all in different cabins of the same rotten old boat!!! :shock: :wink: LOve Sue

    Hi Debbie, Sue and Princess! Debbie your post very useful and thanks for the info. am seeing gp tomorrow so am honing my questions down and this helps. Also, Sue, think am inclined to agree with what you said in second para - certainly seemed to be treated the same and, as you say if the pain is the same then it is all semantics!
    It's so useful to have all these opinions, really does help and I don't feel so isolated. My family don't really understand what I am dealing with so thanks again!
    Sally
  • stepdeb
    stepdeb NonActiveMember5yrs Posts: 27
    edited 30. Nov -0001, 00:00
    Hi Debbie, Sue and Princess! Debbie your post very useful and thanks for the info. am seeing gp tomorrow so am honing my questions down and this helps. Also, Sue, think am inclined to agree with what you said in second para - certainly seemed to be treated the same and, as you say if the pain is the same then it is all semantics!
    It's so useful to have all these opinions, really does help and I don't feel so isolated. My family don't really understand what I am dealing with so thanks again!
    Sally

    Hope you get some answers tomorrow. Let us know what happens?
    :D
  • woodbon
    woodbon NonActiveMember5yrs Posts: 4,969
    edited 30. Nov -0001, 00:00
    Good luck for tomorrow! :D Love Sue
  • salamander
    salamander NonActiveMember5yrs Posts: 1,906
    edited 30. Nov -0001, 00:00
    stepdeb wrote:
    Hi Debbie, Sue and Princess! Debbie your post very useful and thanks for the info. am seeing gp tomorrow so am honing my questions down and this helps. Also, Sue, think am inclined to agree with what you said in second para - certainly seemed to be treated the same and, as you say if the pain is the same then it is all semantics!
    It's so useful to have all these opinions, really does help and I don't feel so isolated. My family don't really understand what I am dealing with so thanks again!
    Sally

    Hope you get some answers tomorrow. Let us know what happens?
    :D

    thanks Debbie and Sue! Feeling a bit more confident.
    x
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -0001, 00:00
    Good luck, Sally. All the best. :) x
  • salamander
    salamander NonActiveMember5yrs Posts: 1,906
    edited 30. Nov -0001, 00:00
    princess01 wrote:
    Good luck, Sally. All the best. :) x

    thanks princess!
  • salamander
    salamander NonActiveMember5yrs Posts: 1,906
    edited 30. Nov -0001, 00:00
    hi everyone, went to the doc this morning and thought I would let you know what she said. Basically, although my arthritis is sero-negative it is treated the same as rheumatoid and it is a well documented, tried and tested method - apparently! The liver tests were all ok i.e. I don't have hepatitis and she said that the reason they were so high in the summer is because of the general inflammation I was suffering. They are lower now as I am on steroids, as are all the other bloods.

    She told me I was in charge of my treatment! And if I wanted to postpone taking mtx until new year, that was fine. So that's what I am going to do.

    I spent most of the consultantion crying, which I am somewhat embarrassed about but the reason being it is my birthday and my mum died a few weeks ago and I'm missing her badly today. Not that I ever saw her on my birthday but she always called and I am sad she is not around. That and the recent diagnosis and being on steroids is making me very weepy. But am doing ok really, especially with all your support here.
    S xx
  • frogmorton
    frogmorton Member Posts: 30,447
    edited 30. Nov -0001, 00:00
    Hi Sally
    I am so sorry you are missing your Mum. I miss mine too whenevr anything difficult happens. I want to chat to her and i can't. If she could be she would be here for you I am sure.
    New year sounds finr for your MTX.
    You take care
    Love
    Toni x
  • salamander
    salamander NonActiveMember5yrs Posts: 1,906
    edited 30. Nov -0001, 00:00
    frogmorton wrote:
    Hi Sally
    I am so sorry you are missing your Mum. I miss mine too whenevr anything difficult happens. I want to chat to her and i can't. If she could be she would be here for you I am sure.
    New year sounds finr for your MTX.
    You take care
    Love
    Toni x

    Thanks Toni x
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -0001, 00:00
    sally36 wrote:
    hi everyone, went to the doc this morning and thought I would let you know what she said. Basically, although my arthritis is sero-negative it is treated the same as rheumatoid and it is a well documented, tried and tested method - apparently! The liver tests were all ok i.e. I don't have hepatitis and she said that the reason they were so high in the summer is because of the general inflammation I was suffering. They are lower now as I am on steroids, as are all the other bloods.

    She told me I was in charge of my treatment! And if I wanted to postpone taking mtx until new year, that was fine. So that's what I am going to do.

    I spent most of the consultantion crying, which I am somewhat embarrassed about but the reason being it is my birthday and my mum died a few weeks ago and I'm missing her badly today. Not that I ever saw her on my birthday but she always called and I am sad she is not around. That and the recent diagnosis and being on steroids is making me very weepy. But am doing ok really, especially with all your support here.
    S xx

    That's interesting what your GP said, thank you for sharing. I thought so!
    I'm very glad you don't have hepatitis and that your blood test result have improved. Your GP sounds great and she's right, it's your body and therefore, should be your choice.
    I'm sorry you're feeling so low and missing your mum. You have us all here for support. I hope you manage to enjoy your birthday.

    x

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