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southwalessunshine
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Pred taper not working?
« on: Sep 18th, 2007, 2:16pm »
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Hi all,
I recently got my doc to prescribe me a pred taper.  he's such a doll.  He hadn't ever heard of it for Ch but is really open to ideas and is so helpful.  
However, I've been on the taper for 6 days now and I'm not sure if it's working how it should.  The shadows I was having were persistent, all day and night but now they're still there but not so frequent.  I still get hit at about KIP 7 in the evenings or late afternoons though, no change there.  It does help not having the persistent shadows but I was under the impression that the taper stopped everything until you stopped taking it?  Was I misinformed or did i have too high expectations?  Is this the best I can expect?  It would be really great if you guys could let me knowabout your experiences with a pred taper.  thanks in advance x
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Re: Pred taper not working?
« Reply #1 on: Sep 18th, 2007, 2:34pm »
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A pred taper has always worked for me.  What dosage are you taking?
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southwalessunshine
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Re: Pred taper not working?
« Reply #2 on: Sep 18th, 2007, 2:37pm »
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I had 40 mg (8 tabs)for 4 days.  I'm on 30mg (6 tabs)  for another 4 days, then down to 20 mg (4 tabs) for 4 days and 10mg (2 tabs)  for 4 days.
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Re: Pred taper not working?
« Reply #3 on: Sep 18th, 2007, 2:43pm »
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I have done two different type of tapers.  The first was 60mg per day for one whole week and then taper off 10mg per day.  The second taper I did was 60mg for three days, then 50mg for three days, 40mg three days and so on.  You may not have hit it hard enough.  Then again I would not recommend a second taper right away.  Others should be along with better knowledge then me.  Here's hoping for PF days!
Tim
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Re: Pred taper not working?
« Reply #4 on: Sep 18th, 2007, 2:54pm »
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It's that same old "everyone is different" thing again. At doses as low as 30mg a day I get a 100% block rate. I've seen others post that at 60 plus they're still getting hit. I'm with you, the trial and error part is so danged frustrating.
 
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Re: Pred taper not working?
« Reply #5 on: Sep 18th, 2007, 9:25pm »
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You may have to run another round with a higher starting dose. I've seen recommendations in the med literature ranging from 10 to 100mg as the starting dose although it's clearly that something around 60-80 is more common.  
 
There is sufficient individual variation with any of the meds we use that a life of trials/experiments is the norm. Patience and persistence are survival skills! (sorry..)
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Re: Pred taper not working?
« Reply #6 on: Sep 18th, 2007, 9:45pm »
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Just to chime in along with everyone else, here's my experience:  I had my first pred taper last year for CH and it worked like a charm.  I started at 60mg but as soon as I tapered down to 50mg, the CH's started coming again.  The dr. recommended staying on 60 for a bit longer and then tapering down, which I did.  I did this while waiting for Verapamil to build up in my system.  This year I did two tapers (both proved to work only with 60mg for several days before tapering down to lower doses.)
 
For me 60 mg is the magic starting number.  Are you taking pred while waiting for some other med to work in to your system?
 
Good luck!
 
Joshua
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Re: Pred taper not working?
« Reply #7 on: Sep 19th, 2007, 2:34am »
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40 mg a day wouldn't prevent my clusters either. I always start out at 60mg and taper from there.  
 
Goodluck
 
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southwalessunshine
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Re: Pred taper not working?
« Reply #8 on: Sep 20th, 2007, 8:11am »
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I'm taking it to give me a rest for a week or so until i see the Neuro on Oct 2nd.  I'm not on any prevents at all and have been hammered everyday for almost 14 weeks.
Thanks for all your comments x
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
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Re: Pred taper not working?
« Reply #9 on: Sep 20th, 2007, 8:30am »
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Have you ever thought about alternative methods for relief?  Check out clusterbusters.com.  I have found RC seeds to be amazing!
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Re: Pred taper not working?
« Reply #10 on: Sep 20th, 2007, 9:14am »
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 I've had two pred tapers. Both started at 60 for (I think) a week, then down to 40 for 5 days, 30 for 5 days, etc... One taper worked for me, the other didn't.  The one that DID work knocked the beast out completely within a few days of starting, and it didn't come back 'til I was on the lowest dose. From what I've read about other people's experiences, 40 seems to be a little low to start, but hey... I'm no doctor. Wink
   Good luck with your treatment. Hope you find something that'll work!
 
Adam
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Re: Pred taper not working?
« Reply #11 on: Sep 20th, 2007, 11:37pm »
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It only worked for me after we increased it to 60mg.
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