Remission-what is it?

Hi there. I had , perhaps naively, thought that remisssion meant that there was no RA activity when off all meds. Is that correct or does it just mean that there is no activity ( but you are still ON meds)??

If the latter then are you basically doomed to be on drugs forever? What happens when you have run through all drugs and nothing works ? Is everyone basically dead by then or what sort of future is there?

Sorry, just really disheartened.

( RA and on mtx and quinoric)

11 Replies

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  • Unfortunately, in RD remission usually means inflammation in under control. Unlike cancer, there is no cure. It is different for most people. The range of severity is extreme. Even with inflammation under control you may continue to have disease activity and many never achieve remission. Some can have years between flares in which they are a symptomatic. Best wishes on finding an approach that works well for you.

  • Thanks. I know there is no cure. I had thought that you could potentially have periods where nothing was happening without drugs being needed. If not then I am really confused as to what happens when you run out of options??

  • There are lots of options & new ones being discovered all the time. It's important too to try really hard to keep a positive frame of mind. I was in remission for a few years and the focs started reducing the drugs. Then got a bad flare,drugs upped again &slightly changed. Now almost under control again. It was really depressing when the disease came back but if you get knocked down you just have to get back up again. Wish you well.

  • Very few people manage with no drugs. I have had the feeling of running out of drugs and nothing working and it is horrible. After 30 years I have been through 6 DMARDS and 4 biologics. It can be like being on a roller coaster with ups and downs. It can take several changes of drugs to find the one to suit you and that can take some time especially as it can take 12 weeks on each drug to see any effects. NRAS or arthritis research website have drug information. Farm

  • With RA you will never be off the drugs and if you stop them the pain and inflammation will come sadly. You will be on drugs for the rest of your life sadly. You will go into remmision when there is no activity,but that is because of the drugs.xxxxxx

  • I have been in remission on and off over last few years, with periods of some disease activity, and flares here and there. But generally able to live normally and mostly pain free. But a medically controlled remission so still on drugs. The good news is that I have slowly been able to reduce the dosage of one of the three drugs I take. I am hopeful that eventually I will be able to manage with many fewer drugs.

    So stay positive. New drugs are being created all the time, and new ways of managing the disease. The positive difference over the last 20 years has been remarkable,so the next 20 is likely to be the same.

  • I was diagnosed in 1978 and was hospitalised for a couple of weeks and then on drugs for a few years. But I started looking into alternative therapies and diet and was mostly off drugs and in remission and with only very minor damage to my joints, until 2007, when symptoms reappeared and more severe joint damage has occurred.

    I'm now on a very low dose of weekly MTX plus Humira, which I take roughly every 6 weeks, although it can be even less often, and my consultant is very happy with the lack of inflammation and pain, although anxious as she knows no one else who is able to stretch the gaps between injections in this way, and keeps warning me I may develop antibodies to the Humira, and have a bad flare.

    So take heart! It is possible for some people to be in drug free remission from RA ...but it does mean exploring other ways of coping, and the down side is I have a RA related neuropathy which is getting worse, and visual problems, which don't respond to RA drugs at all, indeed both quite likely made worse by them, which is why I'm so keen to take as little as possible!

  • I think that true remission means one would be less dependent on medication and while not cured, your medication could be minimal. If you still need some medication then you might be improved but not undergoing remission, just being treated effectively.

    Probably!

  • That's all really helpful -thanks all for taking the time to reply. I think I must have misunderstood my consultant. I will quiz him next time I see him!

    My parents and grandparents all lived well into their eighties and my gran 103 so at the moment I am just feeling I have had decades of my life expectancy removed .

  • My aunt is in a drug free remission and has been for 6 years. It can happen and gives me hope.

  • You have had a lot of good asneers. Lots to think about - mostly that YOU ARE NOT ALONE. Get yourself on a drugs trial, yes there are risks as with any drugs. One may actually work for you. Use your gut feeling, open mind and determination. All together they will keep you going. Wishing you well. Take care xxxx

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