I have no mail from this site for 3/4 weeks, something wrong??

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I am now on my 7th year with PMR , I was down to 5 mgs of pred recently , but had a terrible flare, and had to go up to 8 mgs. I dont know how long i should stay on 8mgs before I can start to do the DSAS method. My ESR and CRP were both up when I had the flare, now the ESR had come down to 17, and CRP to 40 (it was 127 before when I had the flare). The flare up was horrendous and put me out of action for a while, so I am a little cautious . What shall i do with reducing.?

Thank you for your help and advice.

0 likes, 4 replies

4 Replies

  • Edited

    If you have been on 8mg for longer then a week, then you need to come down gently. If it is shorter time, then one can jump back to the dose that was last comfortable ( somewhere above 5mg). Judging by your description of the flare and blood tests, I would guess that it was more then a week. If I were you I would use DSNS (slow taper) method and try to decrease from 8 with target somewhere ~6.

    re "no emails" - nobody gets them any more after site was "upgraded". You may get one if you get direct reply to your post though ( this post for example). other then that one has to go to site notification page and check if there was any activity - ... it sucks.

  • Posted

    And, just to add to Nick's comment, don't taper at all IF you are still feeling lingering symptoms. If you start the taper before the symptoms are as good as they were before your flare you may have to increase again which puts you into a yo-yo position and it can be harder to have a successful taper. Better to wait even a few days longer and then be more secure at your level before tapering again. The CRP is still high, so caution in tapering is advised. As we often say, "It isn't slow if it works."

    Take care.

  • Posted

    I started the slow method in 1/2 mg increments as soon as I reached 10 mgs from 15.

  • Posted

    They have changed the system - you get no notifications unless someone replies to you directly. It is utterly useless and is killing the forum again. Who is going to check in daily to try and use the internal notifications list to find all that is new and read it? It takes me nearly 1/2 minute to get from writing a reply to the next post I want to read. We objected - we weren't asked or warned - but as usual they are ignoring us. In the hope we will go away I suppose ...

    i think you should wait until the CRP is well down before tapering again. It sounds more as if this is a flare in disease activity rather than just having overshot the dose. At least you haven't had to go back to the beginning.

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