JIA - stopping Anakinra (Kineret in 1 week)

Posted , 5 users are following.

I've been dealing with Juvenile Idiopathic Arthritis for 4 years now. I was tried on many different drugs including Methotrexate and Tocillizuamb however they did not work. 

I started Anakinra daily injection (kineret) 2 years ago and I have had no problems, no pain, no side effects. However my doctor wants to take me off it and see if my disease has settled. 

As anyone can imagine I'm very anxious about it, so I was just wondering if anyone else has come off of Anakinra (Kineret) for any kind of arthritis after the 2 year window and what has happened? I.E any side affects if their disease flared again. Any information would be helpful. 

Thank you

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  • Posted

    If the disease is still active, how soon the symptoms will return depends on the half life of the medication.  Having to take it every day sounds like the symptoms would come back sooner than say enbrel, which I stopped and symptoms came back like gangbusters in 5 months.  And it is unpredicable where it will come back too.  I stopped Humera when I was on it, and it came back first in my jaw, which was troublesome to eat for awhile.  I did this stopping on my own, but I did read that doctors were doing this too, just to see.  I don't think it's wise.  If you still show the same signs in the serology tests, that ought to be sign enough, that it's still active.  Only the medication is keeping it asleep.  Can't you just have them do the blood tests to see the signs are still there?  And NOT go off the medication?

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    • Posted

      All blood tests have been normal for over 1 year now with only slight changes due to infections because of my lowered immunity. I have asked for second, third and even fourth opinion however every doctor, from immunologist to rheumatologist says 2 years is the marker to take me off and see how I fair without it. But I am terrified due to becoming almost paralysed with pain before we found Anakinra. I guess I just have to have faith and see.

      Thank you for your response

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    • Posted

      I am sure they will monitor you very closely.  Some people do have long periods where their disease is inactive.  You may be the lucky one for whom that happens and your fears have been unfounded.  However I would tell the immunologist about your concerns and how terrified you are... cant think that is good for your immune system anyway!  How good would it be if you went off it and didnt have any symptoms at all and didnt need any medication!  | You would never know unless yuou try with  the right supervision of course!  Rooting for you
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  • Posted

    Hi katy, i a m really sorry to hear of your plight and I think yiu are wise to have concerns abiut coming off a drug which has helped hou, i am assuming it is the Rheumatologist who is suggesting this and not your GP! Maybe you can ask fir a second opinion, you are entitled to do that. They dont always get it right although Inam sure the team are doing their bext for you. Please continue to state how worried you are about this change in your treatment. Worse case scenario, you have a short spell with cortison and go back on the drug I guess.
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    • Posted

      It's actually an immunologist that is taking me off Anakinra, I have asked for different opinions from rheumatologists too and they say the same that 2 years is the maker to see if I don't 'flare' without anakinra.

      I guess I just have to have faith and try to keep calm if I do have any complications. It's just frustrating that I have come so far due to Anakinra and it terrifies me that it might take me 5 steps back again.

      Thank you for your response

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    • Posted

      with many meds like this your body becomes accustomed to them and they no longer work and you have to start with a new med.  Maybe that is the doctor's concern.  I would think you could go right back on it if you become symptomatic.   I always tell the doc my concerns and generally they both listen to me.   Hopefully your docs do too.   Maybe you have been put in a long period of remission and that would be so great to find out.   Course I know your fear and it is reasonabla

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  • Posted

    Hello Katey

    My son is 16 and have had sjia for a year. He is fine on Kineret, and now the doctors want to stop. I am so nervous. Are you still of medicine? 

    Best regards

    Elizabeth, Denmark

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