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Defining Remission UK.

Posted , 9 users are following.

pieter
pieter

Hi everyone,

I was wondering if anyone could give me an answer to a question, i can't seem to get my rheumy to answers. As he's set on his ways, I'm in remission.

Do you still experence pains, tenderness and swellings when in remission?

The only information I have stumbled across was from the American college of Rhematology on defining remission in Rheumatoid arthritis and going by that I don't meet 5 out of the 6.  the only one I meet is no morning stiffness. 

Asfar as I can tell in the UK they decided that it was too hard to meet the remission standards, so have lowered them.  but can't find out what the new standards are to meet the remission status.

0 likes, 28 replies

28 Replies

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  • Tinabird
    Tinabird pieter

    Posted

    I also agree that you might want to consider another Rhuemy!

    This group is very helpful. I am very new so it has been helpful to read all your feedback pieter. I hope you find some answers!

  • Rowbirdie
    Rowbirdie pieter

    Posted

    Hi

    yes, DAS score less than 2 . 6 is classified as remission. I too have been in remission since January ( officially) I have swollen joints still( some fingers and knuckles and right knee), and some minor pain in feet, ankles, shoulders- not needing painkillers. I still have stiffness for hour or so in morning. Once I start moving this all improves.

    You can find a DAS calculator online. It computes a number based on: number of tender joints/ swollen joints/ crp score and patient perception of pain and disease activity ( percentage out of 100) you should be having this done each time you have a rheumy appt.

    So my crp is consistent now around 10% ( which is higher than normal) but my DAS comes out low because I have no tender joints when tested. My improvement has come about due to having a biologic. As it comes time to have the next 6 mth  shot my symptoms increase.

    i m writing all this as I suspect each 'experience of remission' may be a little different.

    If you think your condition could be improved and there are other meds that could be tried- find a rheumy you could discuss this with. 

  • pieter
    pieter

    Posted

    Firstly thank you everyone for your advice and welcomes smile

    i just recieved a phonecall from my GP that my papers where ready. I should explain that I haven't been convinced that my RA was at fault with my pains, as I tend to get pains in my thighs , hips, neck, spine and also had afew tmj sessions for fun. So i went ot the docs and they stated it was my RA and making me appointments with the rheumy, who stated remission so then i asked about the who secondary condition and all i've been told is its not important my main diagnosis is RA which is in remission and if i ask my GP then they state old RA damage, which i couldnt get my head around as why it would affect different places, if it was just old damage. I had a look over what they are saying and from my recent visit i got this:  so maybe someone can make some sense of it or if i have just gone mad?

    Rheumatoid factor 80

    Anti-ccp 220

    C reactive protein <5 mg/ l0-9

    ana-neg

    on examination, he has synovitis of the left mtp joints. the other joints show no active synovitis.

    i had a long discussion with the gentleman and explainned to him that the diagnosis of ra stands. it is palindromic in nature where he would get one joint affected, or one or more joints affected for a few days then things go back to normal.

    i have asked him to increase his celecoxib to 2 capsules  daily during attacks. i have also told him to keep track of the attacks so we can decide whether to add a disease modifying drug or not. should the frequency of attacks increase, we may consider adding hydrochloroquine or sulfasalazine at follow up 6 months time.

    from ra nurse 08/15

    i confirmed with him today that he does have the diagnosis of ra since 2003 with secondary degenerative changes and no  evidence of any active inflammatory synovitis in the hands, knees or wrists. the ultrasound examination of his mcp's did reveal some degenerative changes but as said before there is no  evidence of any active inflammatory synovitis.

    ra nurse /06/15

    the gentleman had a number of questions, i have explainned that the findings do appear to be in keeping with secondary denenerative joint disease rather than active inflammatory arthritis.

    rheumy 5/6/15

    clinical examination revealed some chronic rheumatoid deformity with secondary degenerative changes , no evidence of active inflammatory synovits in the hands,wristr, feet or knees. ultrasound examination of his mcps revealed  degenerative changes and no evidence of active inflammatory syynovitisd. there were some grade 2 gray scale changes at the wrist and also small joint effusion at the left elbow, where there is a fixed flexion deformity, but no pdi signal there at all.  it probably would be felt that the degree of effusion would be more in keeping with secondary degenerative joint disese, rather than active inflammatory arthritis.

    so am wondering if i am  looking at a palindromic in nature ra.

    or secondary osteoarthritis caused by the ra.

    or just ra damage. mg/="" l0-9="" ana-neg="" on="" examination,="" he="" has="" synovitis="" of="" the="" left="" mtp="" joints.="" the="" other="" joints="" show="" no="" active="" synovitis.="" i="" had="" a="" long="" discussion="" with="" the="" gentleman="" and="" explainned="" to="" him="" that="" the="" diagnosis="" of="" ra="" stands.="" it="" is="" palindromic="" in="" nature="" where="" he="" would="" get="" one="" joint="" affected,="" or="" one="" or="" more="" joints="" affected="" for="" a="" few="" days="" then="" things="" go="" back="" to="" normal.="" i="" have="" asked="" him="" to="" increase="" his="" celecoxib="" to="" 2="" capsules ="" daily="" during="" attacks.="" i="" have="" also="" told="" him="" to="" keep="" track="" of="" the="" attacks="" so="" we="" can="" decide="" whether="" to="" add="" a="" disease="" modifying="" drug="" or="" not.="" should="" the="" frequency="" of="" attacks="" increase,="" we="" may="" consider="" adding="" hydrochloroquine="" or="" sulfasalazine="" at="" follow="" up="" 6="" months="" time.="" from="" ra="" nurse="" 08/15="" i="" confirmed="" with="" him="" today="" that="" he="" does="" have="" the="" diagnosis="" of="" ra="" since="" 2003="" with="" secondary="" degenerative="" changes="" and="" no ="" evidence="" of="" any="" active="" inflammatory="" synovitis="" in="" the="" hands,="" knees="" or="" wrists.="" the="" ultrasound="" examination="" of="" his="" mcp's="" did="" reveal="" some="" degenerative="" changes="" but="" as="" said="" before="" there="" is="" no ="" evidence="" of="" any="" active="" inflammatory="" synovitis.="" ra="" nurse="" 6/15="" the="" gentleman="" had="" a="" number="" of="" questions,="" i="" have="" explainned="" that="" the="" findings="" do="" appear="" to="" be="" in="" keeping="" with="" secondary="" denenerative="" joint="" disease="" rather="" than="" active="" inflammatory="" arthritis.="" rheumy="" 5/6/15="" clinical="" examination="" revealed="" some="" chronic="" rheumatoid="" deformity="" with="" secondary="" degenerative="" changes="" ,="" no="" evidence="" of="" active="" inflammatory="" synovits="" in="" the="" hands,wristr,="" feet="" or="" knees.="" ultrasound="" examination="" of="" his="" mcps="" revealed ="" degenerative="" changes="" and="" no="" evidence="" of="" active="" inflammatory="" syynovitisd.="" there="" were="" some="" grade="" 2="" gray="" scale="" changes="" at="" the="" wrist="" and="" also="" small="" joint="" effusion="" at="" the="" left="" elbow,="" where="" there="" is="" a="" fixed="" flexion="" deformity,="" but="" no="" pdi="" signal="" there="" at="" all. ="" it="" probably="" would="" be="" felt="" that="" the="" degree="" of="" effusion="" would="" be="" more="" in="" keeping="" with="" secondary="" degenerative="" joint="" disese,="" rather="" than="" active="" inflammatory="" arthritis.="" so="" am="" wondering="" if="" i="" am ="" looking="" at="" a="" palindromic="" in="" nature="" ra.="" or="" secondary="" osteoarthritis="" caused="" by="" the="" ra.="" or="" just="" ra="">

    ana-neg

    on examination, he has synovitis of the left mtp joints. the other joints show no active synovitis.

    i had a long discussion with the gentleman and explainned to him that the diagnosis of ra stands. it is palindromic in nature where he would get one joint affected, or one or more joints affected for a few days then things go back to normal.

    i have asked him to increase his celecoxib to 2 capsules  daily during attacks. i have also told him to keep track of the attacks so we can decide whether to add a disease modifying drug or not. should the frequency of attacks increase, we may consider adding hydrochloroquine or sulfasalazine at follow up 6 months time.

    from ra nurse 08/15

    i confirmed with him today that he does have the diagnosis of ra since 2003 with secondary degenerative changes and no  evidence of any active inflammatory synovitis in the hands, knees or wrists. the ultrasound examination of his mcp's did reveal some degenerative changes but as said before there is no  evidence of any active inflammatory synovitis.

    ra nurse /06/15

    the gentleman had a number of questions, i have explainned that the findings do appear to be in keeping with secondary denenerative joint disease rather than active inflammatory arthritis.

    rheumy 5/6/15

    clinical examination revealed some chronic rheumatoid deformity with secondary degenerative changes , no evidence of active inflammatory synovits in the hands,wristr, feet or knees. ultrasound examination of his mcps revealed  degenerative changes and no evidence of active inflammatory syynovitisd. there were some grade 2 gray scale changes at the wrist and also small joint effusion at the left elbow, where there is a fixed flexion deformity, but no pdi signal there at all.  it probably would be felt that the degree of effusion would be more in keeping with secondary degenerative joint disese, rather than active inflammatory arthritis.

    so am wondering if i am  looking at a palindromic in nature ra.

    or secondary osteoarthritis caused by the ra.

    or just ra damage.>

    • Rowbirdie
      Rowbirdie pieter

      Posted

      I think ' secondary degenerative  joint disease ' must mean osteo arthritis- but why not explain it as that? 

      I can understand your frustration as you are describing pains in back and hips that were presumably not as a result of your earlier RA.

       

    • pieter
      pieter Rowbirdie

      Posted

      Yeah thats what i thought but with my latest visit sort of adds more confusion

      "with the gentleman and explainned to him that the diagnosis of RA stands.It is Palindromic in nature where he would get one joint affected, or one or more joints affected for a few days then things go back to normal"

      So can i be in remission with "Palindromic in nature" RA.  as I think thats suggesting that its flares up then goes away and then flares up. and then when they keep adding "secondary degenerative change" is that referring to old RA damage. which is causing the pains and not RA which is in remission or Palindromic in nature and then we have references to the secondary degenerative joint disease which is osteo, which is causing the pains and not the above. I made an appointment to see a GP about this mention of secondary degenerative  joint disease and she just said that means I have arthritis so i said osteo and she said no just arthritis.  And when i asked the last rheumy about this she said it wasn't important as my main one is RA. I thought reading the notes would help me abit but just seems to confuse more.

      I've never heard of

    • Rowbirdie
      Rowbirdie pieter

      Posted

      Yes I think you can be in remission with palindromic RA. It s a less severe form. Currently you are in remission. If it flares up in next 6 mths they ll consider giving you a dmard .

      But - that doesn't deal with back/ hip aches. How debilitating are these? Does exercise like swimming help? How about trying glucosamine? I should treat it like its ( osteo) arthritis ie wear and tear but keep a pain diary in case a pattern more like RA emerges.

      All the best

    • pieter
      pieter Rowbirdie

      Posted

      I've never heard of palindromic RA until the Rhuemy mentioned it on Friday and reading up on PR it kinda of matches what I get. As 3 weeks ago on the Saturday night i felt abit it worn down so had an early night and on the sunday I woke up in pain, Fingers where all sore and the tips of each fingers where swollen (like clubs) and normally when my RA cause my fingers to swell it would of been the whole fingers), ball of left foot was swollen aslong with the part on top before the 3 middles toes, the two little toes have been twice the size for about 8 months and bending away from the other toes. both wrists where swollen ( left one always gets a solid lump infront of the wrist when it swells (they x-rayed it but came back with nothing) and thought ganglion-cyst. both ankles where painful,right knee painful,right shoulder was painful (thats was at the point of tryin to move causes a exteme sharp pain, left hip thats like the shoulder pain. another common pain i get is the bit at the top of the inside leg and they lasted till thursday and then all pain stopped and all but 2 fingers returned to normal.  So lucky this time when I saw the rheumy she mentioned on the letter about the joints but no mention of my foot or toes in the letter.

      But reading up on PR it seems too be a different condition to RA?

    • Rowbirdie
      Rowbirdie pieter

      Posted

      Hi

      you ve got me looking up palindromic RA now!

      Arthritis research website, which is a very good one for explaining things thoroughly, it says palindromic may turn into RA.

      it concerned me you said your little toes were beginning to bend away from other toes as might this mean joint destruction is happening? In which case you definitely need DMARDS to hold back progression of disease.maybe that s what they re thinking too .

      i can only think a thorough diary of disease activity is the best course of action now

    • pieter
      pieter Rowbirdie

      Posted

      Thank you Rowbirdie  smile I wasn't sure if RA could be palindromic in nature but i guess it could be.I made a mistake she did mention my toes well MTP joints. Heres a scan of the letter from my recent visit.

      So from reading my letters I seem to have this condition:

      i have RA which is in remission, which is palindromic in nature with secondary degenerative changes which is more in keeping with degenerative joint disease. smile bit of a mouth full

       

    • pieter
      pieter

      Posted

      Hi everyone,

      I just got back from the doctors and he read my letters and yes its ostero, he also pointed out that the secondary degenerative changes was more to do with the aging process.  With the osteo and changes theres no special drugs just pain management. And i've been lucky to have no destruction from the RA Which there not saying i've never had RA, not sure what to make of that statement as if there impling its gone then I must be the first person that has lost RA.

      So i guess its:

      gone

      remission

      palindromic.

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