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Call For Remissioners !!

Posted , 10 users are following.

Hala_Ahmed
Hala_Ahmed

Hi all,

I have been on MTX and plaquenil for three months. Stiffness and swelling is parially under control. There's a bit of improvment in general. However, I'm never pain free especially in the morning. My hands are still aching in the mroning and so do my heels. I was pain free for just two days and I had no idea why. Anyway, my two doctors say I'm in remission !!!

Could anyone here who is in remission define what remission is, how you feel, how your doctors decided you're in remission, how long it took you to get into remission after you started treatement and have you stopped drugs??

Thanks,

Hala

0 likes, 38 replies

38 Replies

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  • Guest
    Guest Hala_Ahmed

    Posted

    Hi Hala, I'm thinking the meds are just starting to work. Wait a month or two and if you are still pain free then you maybe in remission but I am on plaquenil now for 5 months and I had a week (almost) of pain free, got up this morning and there it was. It didn't stay long but a gentle reminder that it is still there. I don't think 2 days is enough time to really tell.
    • Hala_Ahmed
      Hala_Ahmed Guest

      Posted

      Just a clarification. The two days free of pain were 2 weeks ago. I'm back into pain again.
  • Debra1954
    Debra1954 Hala_Ahmed

    Posted

    Hi Hala,I've had RA for over 7 yrs. Started on Methotrexate but eventually went on to Plaquenil which I seem to tolerate well. Apart from some ankle puffiness and occasionally around the knees I've never really had any swelling but I have experienced pain in a variety of joints. During my last visit to the rheumatologist he said he felt the Plaquenil was doing its job and I was probably in remission. That was very good to hear except I still have painful joints, my hands & fingers seem to be getting stiffer and often feel extremely tired, the usual RA symptoms. So I am a bit puzzled as to exactly what it means to be in remission. There was no mention of stopping the drugs so I guess I will always be on them. Im presuming when we have our blood tests the results of those are what the rheumatologist goes by. I will try and find out more at my next appt.
    • Hala_Ahmed
      Hala_Ahmed Debra1954

      Posted

      Hi Debra,

      Thanks for the reply. I have same case. Little swelling, some stiffness especially in the morning and a lot of join pain. However, my doctors say I'm in remission. Stopping drugs is quite prohibited for them.

  • lyy13133
    lyy13133 Hala_Ahmed

    Posted

    This is why it is all so difficult. To suggest remission is based on CRP, ESR etc and yet a person still has all the symptoms actually suggests the criteria for remission are incorrect. The reason the criteria are incorrect is because they are not established by those who have RA. If you went to the dentist with a swollen face, in pain and everything aching and they told you everything was ok after treatment but you were still in pain, aching and had a swollen face, you really would not agree all was ok. So, come on RA people, let's get together and start making our criteria for our remission. 
    • chrissie72261
      chrissie72261 lyy13133

      Posted

      HI Ivy i was told id does depend on your ESR CRP if there not active then your in remission  but mine very active
  • chrissie72261
    chrissie72261 Hala_Ahmed

    Posted

    ive not been in remission mine getting worst but i think two weeks of remission  if it goes on longer and no flare ups then you be in remission good luck to all ikf you are
  • Light
    Light Hala_Ahmed

    Posted

    I'm in remission. I have been for about 6 months. (I'm nervous of tempting fate by even saying it! How silly is that?)

    It means that after being diagnosed 8 years ago, this is the first time I've been entirely pain free, and on a very reduced dose of both MTX and prednisolone.

    I have three friends with RA who have been in remission for many, many years.

    It's a mysterious disease with a life of its own!

    • chrissie72261
      chrissie72261 Light

      Posted

      HI LIGHT DEPENDS ON YOUR ESR AND CRP IF ITSW ACTIVE IF ITS NOT THEN YOUR IN REMISSION  HOPE IT STAYS LIKE IT I GET FASES I THINK I AM  BUT MINE VERY ACTIVE
    • Light
      Light chrissie72261

      Posted

      I don't think it's as simple as that. Your ESR can raise for any infection in the body... it may have nothing to do with RA. That includes a cold or  something else. It doesn't distinguish.

      So clinical assessment is best.

      But maybe with an ideal remission everything would be in the 'normal' range and you'd not be on any medication at all.

      I don't think RA works quite like that, but I may be wrong.

    • chrissie72261
      chrissie72261 Light

      Posted

      well mine not a cold or virus but they think something else coursing  as im worst  im not in normal range since became housebound so might be that who knows  well good luck at your clinical accessement mine not so easy i have low blood count goes up and down like a yoyo so that mighht be mine  you may be righht light hope goes well
    • lyy13133
      lyy13133 Light

      Posted

      Absolutely true!!! My cousins ESR was massively high but she has no RA and they asked her if she had TB!!! Also, the CRP can be elevated simply by using Ibuprofen. Actually, they have no idea what remission means and neither do we. I have said this before and I. Am saying it again, I was told to go on meds. I refused. They become quite horrible in their 'you don't understand RA'. I go on Chinese meds. I am stronger, fitter, have no pain, no swelling, no puffiness, and they say these are a waste of time. Meanwhile, my ESR and CRP are dropping massively. So, what is treatment and what is remission!!!!!!
    • chrissie72261
      chrissie72261 lyy13133

      Posted

      hi ivy I think in my case it tablets yes I also use chinese medicine I had accuputure but know gets to.painful want do take in chinese medicine I take nettle celery seed green tea id be interested I love stop medication but mine very advance had it since I was 7 and was crppled at that age but spent a year in hospital as a child but at 18 throught grew out of it but came back with a venagence and also I have 90 percent of Ra and fibromayalgia and ME who knows ivy what is remission when you dont have pain for years
    • danny16391
      danny16391 Light

      Posted

      An esr test is simply to find out the amount of inflamation,all that is done by seeing how long a measured sample of blood takes to run down a tube.

      For remission read as good days and bad.

    • chrissie72261
      chrissie72261 danny16391

      Posted

      hi danny i agree but i think more like get no pain at all  isremission i have met people not had pain for  years but came back when they got a virus ect well i triedasking my consultant he said same as you but with no pain or minmal pain
    • Hala_Ahmed
      Hala_Ahmed Light

      Posted

      Hi light, could you please tell us more about your remission, how you feel and how your doctors decided it is remission. Are you still on drugs??

      Hope you stay in remission for ever smile

    • Hala_Ahmed
      Hala_Ahmed lyy13133

      Posted

      Hi lyy, tell us more about your chinese treatment...it sounds you're alright without the help of the toxics we have to take.
    • donna82193
      donna82193 lyy13133

      Posted

      Hello. I was really interested in your message. Ive just been diagnosed with ra and waiting for meds. The side effects are awful so thinking of refusing. Can u tell me more about the chinese remedies u are using.

      Thankyou. X

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