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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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  • Light
    Light pieter

    Posted

    I'm curious too, now you mention it.

    Is it for legal-practical reasons you want to know.... or just curious?

    • pieter
      pieter Light

      Posted

      Hi light,  it's just for my sanity smile

       

  • cata
    cata pieter

    Posted

    Pieter you need to do a disease activity score test, also called DAS28 score, if you google for it you should find it.  Less than 2.6 is classified as remission in the UK .

    And yes you can have pain and swelling because often the destruction in the joints by itself is enough to perpetuate localised inflammation, which causes those symptoms.

    ( Temporary) remission induced by medication is defined by a set of parameters and the blood results tend to be the ones with more weight  as they tell us the levels of generalised (whole body) inflammation. So things like your C reactive protein (CRP) levels are more important, and they should be normal (bellow 5 ) if you are in remission as your doctor says 

    • vickie3
      vickie3 cata

      Posted

      Unfortunately, the DAS28 doesn't take into account foot pain (which is the main source of my trouble) or the fact that not everyone's ESR jumps during a flare. So that rating isn't a good indicator for many like myself.

      I'd take it with a pinch of salt, personally.

      Vic

    • vickie3
      vickie3

      Posted

      Although I've heard that the reason it doesn't include feet is because they're so commonly painful...
    • pieter
      pieter cata

      Posted

      Thank you cata,

      One thing that does get mentioned is my level are still high not sure on the score. but I've put in for my medical records and test reults relating to my RA and I recieved a call today saying i should have them by friday.

      so I'll update the post with those results, but my main concern was if you can still get the pain,tenderness, swelling etc. so thank you very much for the information. it would of been nice if my rheumy just answered but i dont have a good relationship with him as I feel im left out of the process and when I ask them anything they simply dismiss it with  "your normal"

    • cata
      cata pieter

      Posted

      Piter I assume you are in the UK like me (and contrary to most people here apparently), why not change rheumatologist? When we have a chronic disease we don't want on the top of that hardship to also to feel abandoned by the people who is supposed to help us. 

      The good news about remission is that the active destruction by the immune system will stop  

    • pieter
      pieter cata

      Posted

      Hi Cata,

      I'm from the Highlands, and in 2012 My rheumatologist retired. so this left everyone up this way with 1 rheumatologist. They advertised for another rheumatologist, but no-one seemed to be interested in the position until december 2015 and friday was the first visit i had with what they call as my rheumatologist.  During that time I saw the rheumatologist 3 times saw 2 locums once.  One of the letters I got was one where the rheumatologist called me back in for an appointment as after I saw the locum he thought it was wrong.

      "This gentleman had seen Dr ..... in April 2015 and I could not quite understand the main diagnosis of Polyarthralgia, althought he checked the CCP antibodies which were postive. I therefore called the patient back to clinic to work out what was going on." 

  • cata
    cata pieter

    Posted

    You are right Vicky, it's not an objective definition and "remission" might mean different experiences to different patients .  

    Those exceptions you mention are  slightly different things though - foot pain once the destruction occurrs - because as you walk on your feet you are constantly putting pressure and inducing furtehr destruction -  even if the autoimmune attack/disease is fully controlled feet problem might not 

    But ESR is a non-specific measurement of inflammation and you shouldn't have flares if you are in remisssion. 

     

    • Light
      Light cata

      Posted

      I could also add to this that the stress on joints put by RA can exacerbate the destruction of joints in OA.

      That was my case.

      I thought I was in remission from RA but still had pain in my knees until the x-rays revealed that meanwhile OA had set in and there's not much I can do about that.

      So I end with RA in remission but common or garden OA to keep me alert!

  • Tinabird
    Tinabird pieter

    Posted

    Dear Pieter: Congratulations on being in remission~

     I read the same article. It seems that people's symptons vary a great deal. 

    Something that struck me was the study they are doing concerning our digestive tracts ...One intriguing, if surprising, theory holds that certain forms of bacteria and other microbes in the human digestive tract may influence the severity of RA. Studies have confirmed that diet and other factors can alter the composition of bacteria in the gut. “A change in that bacterial flora could potentially change activity of the disease in an individual,” say Dr Hardin...

    I don't know if this is helpful but stay positive ! Looks like there is still so much to be learned. Know that when your body is able to function at it's best, it is the greatest healer!! continued remission to you!

  • ruth86
    ruth86 pieter

    Posted

    I really dont understand any of it ive had it for a year now my rhumy doc put me on sulfasalazine built up over few weeks to 4 a day i couldnt take that many i was hot heart beating fast giving me anxiety also blurry vision fuzzy head spaced out feeling so he reduced to 3 a day i cant manage that as still feel same so just put myself on 1 a day with pain killers not due to see him for few months am not sure what to do shall i just keep to that till i see him no stiff joints at min just sore i dont understand all the remision thing
    • cata
      cata ruth86

      Posted

      Ruth can't you see your family doctor ? He should be able to advise you on what to do and how to speed up your appointment.

      The problem is that sulfasalazine controls the disease - so stops the destruction of the joints - only 1 tablet a day will not be effective and painkillers only mask the symptoms so although you can cope the joints keep being destroyed.

      Remission just means that your disease is controlled - usually medication controls the attacks to your joints in different levels , to be in remission is th enext level of control , it means that this attack has been totally (or almost totally) stopped. 

    • ruth86
      ruth86 cata

      Posted

      thanks for all your advice i get it now, if i keep taking the 3 a  day that rhumy doc advised do you think so many months down the line my body will get use to them and the side effects may stop or get better? am slowly building myself up to 3 a day again half tablet every so many hours incase as think it was to many in short space of time for my body to take, really wish they could find a cure for this, I did go to see my doctor there not really helpful they dont no enough about it so they just said i have to stay on them till i see the specialist you would think after 7 years of training they maybe able to help a bit more but thats not the case, and i cant change doctors as its miles away to the next doc, i think i shall see if can see rhumy doc earlier he did say last time i sore him there is other medication i could try, also should i be taking folic acid with sulfasalazine someone said i should be but not sure, I have b12 injections every 3 months also so maybe i should also take b6 not sure xx
    • cata
      cata ruth86

      Posted

      Hi Ruth,

      Sulfasalazine interferes with the way the body uses folic acid so yes, I would advise take it – 400mg/day is an adult dose. It’s actually great for the hair too, I used to lose lots of hair and the change was incredible when I started taking folic acid. So you will look prettier too wink

       

      Folic acid is also lost by the body if you take too much for the body’s needs so no danger there

       

      Eat lots of dairy too – milk, yogurts - (unless you are dairy intolerant in which case eat things like canned sardines, almonds and salmon plus many other stuff) to provide calcium for your bones

       

      All the symptoms you describe are side effect of sulfasalazine – this means that it’s normal to have them but still not acceptable to keep going if you feel that you cannot cope.

       

      My advice would be:

      1-     try again to increase sulfasalazine dose again until 4 but go slower this time,  stay for  longer periods of time in each of the intermediate doses  and see how you feel.  

       

      2-     write a dairy of how you feel each day so you can then read it back and see how you are coping – sometimes we forget that we are feeling better . this is also good when you go to the doctor, the best he/she knows what is happening with you , the more informed are their decisions

      3-      (always) read the little paper that comes in the medication box , that way you can know what is a normal side effect of the medication and what is dangerous and not acceptable and make your decisions 

      4- the more you learn about your disease and the medication you take , the more control you gain back and the better you deal with the disease and are able to cope

    • ruth86
      ruth86 cata

      Posted

      Thank you so much for all your advise which i shall try this site is better than going to see my rhumy doc i expalin things to him last time and he just said reduce to 3 tabs i also explained that i had read somewere regarding i should be taking folic acid his reply was yes you can take that if you wish to, well thats not explaining things properly to me as iam new to all this and iam reading lots about it i feel you guys have helped me more on all information than the specialist doc, thank you i shall see how i go xx
    • cata
      cata ruth86

      Posted

      No problem Ruth.  I have a biomedical background and I teach medical science to the public and have done it to medical students as well , and that's why I can give you these indications.

      But,  while everyone in this site is very nice,  always consider advice - especially when it concerns alternative treatments as I have seen many posts on that  -  very carefully. If they are called "alternative " it is usually because they are not proved. Always talk to your doctor

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