Remission ????

I keep reading on this forum about itp and remission I have had itp for 12 months I am right in surmising this will be ongoing or how will I know I am in remission : ) or will I know ???? ... Once again thoughts please I love this forum for all your input : )

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  • I'm not sure how one knows when one is in remission. I haven't needed meds (Rituxan) for over four years, but my haematologist told me that I'll need to be re-treated before the year is out. "No one gets more than five years" is how he phrased it.

    I'll definitely be interested to know what others have to say.

    Ruth

  • I am assumed that remission is if you can keep your platelets count stable once you are off meds. I have had ITP since Feb/Apr 2016 and no remission on the horizon for me as both times I have tried to reduce the revolade dosage my count went down too. I have heard some people have been remisson for years even a decade or two - one can only dream....

  • Yes, as someone mentioned above - remission is when your platelets stay normal without any ongoing medical treatment - i.e. after all the treatment stopped.

  • Hi guys / gals .... My platelets hover between 21/42 no meds as of yet i bruise and have mild petechie I take it I am not in remission because my platelets are lower than normal

  • Really interesting question!

    So, is remission when you have normal platelet counts (normal being above 150) for three months? (I am plucking that figure out of the air as it makes sense to me that there must be a definition of this in terms of both platelet levels and length of time).

  • Tenk ,that could be right I guess when your platelets resume their normal level also do you know how long it is for chronic my platelets level been bobbing 12 months now

  • I don't know the official length of time for chronic - might be described on the American PDSA site or the British ITP Association site; I will try to remember and ask my haematologist when I see her in a few weeks but I tend to have so many questions that some of them fall by the wayside!

  • Hi Tenk, I completely agree I go in with so many questions now 12 months down the line still no answers I just nod and agree ITP is one confusing illness :)

  • I believe remission can be months or years after treatment has stopped but the platelets might drop again at any time. I have been in remission for about 18 months now I think but am aware I might need more treatment in the future, I take every day as it comes now after a bit of a traumatic introduction to ITP and live a relatively normal life

  • Hi Zaff , after ivig drip, BMB, I am just getting monitored weekly I was staring Revolde had a infection 2 weeks ago and my platelets went up to 82 super now it is on hold which I am not too bothered about all good till they fall again my hematologist mentioned you have to laugh and yes after initital ITP diagnosis it is scary then you get on with it my personal experience is fatigue and painful joints .

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