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Topic: is my doc wrong ? pred (Read 343 times) |
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Yorky
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is my doc wrong ? pred
« on: Apr 14th, 2007, 3:13pm » |
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forgive me if i get this wrong but..
doctor puts me on 30mg predisone (low so i am told)
and the rest is a blurr....so i ring up to ask the next day...if my doc cud ring me as i was a little bit, confused as to what meds, i should be taking.....as i have a large pile, and have had little sleep the past two weeks ..blah..blah...
anyway doc rings (he is very suppotive towards me...he cuddled me in is office , last week ,,,while i was getting slmed.)
but he says on friday (shut till monday now)
that he only wants me on the steroid for a week/2..deffinantly no more.?
but he does not want me to start on vrpl what so ever 
last year i was on 720mg aday ?
all he says is he wants to see if the pred will break the cycle ...wtf
i use oxygene, ice ,inject 6mg, tommazzypam.
dont know if i am coming or going ?
when i feel tired...and lie down....then i can "hear the train in the distance (the beast)
time to inject when oxygen/ice dont work.
but when i can feel the pain subsiding....i feel f..k.d for at least an hour?
then bam.....i start to get this excessive energy
and feeling of high want to talk to everyone for ever ?
this as been the patern 4 the last 3/4 days
im losing this conversation now ......but surely a pred is not gonna do alone?
now iv got deeper shadows.....but at least no more than 3 rides a day.
confused...tired......probably time, to get ready for my next .....
ho f ck it hurts too much.
inject.
feel relaxed/vacant.
run about like a headless chicken
start to feel tired again (ho sh t dont like to feel tired)
frkin "groundhog day"
frkin "groundhog day"
sorry if you dont understand my ramble
but he must be wrong ?
tired confused ?????
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Guiseppi
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Re: is my doc wrong ? pred
« Reply #1 on: Apr 14th, 2007, 5:24pm » |
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Very early in my travels, the early 80's, I had a doctor who was convinced pred could break a cycle. Put me on 80 mg a day for two weeks, then about a 4 day taper off.
We tried that twice, both times as soon as I tapered off I got hit with a KIP 1 million. (Don't argue with me, I know a KIP 1 million and this was a KIP 1 million!) It seems like the pred pissed the beast off so he was gonna make me pay for the 2 week break. I abandoned that track and now I do the pred taper for 2 weeks while I ramp up on the lithium. Good luck to you, you sir have been getting your ass kicked long enough and certainly could use a break. Here's hoping you get one soon.
Guiseppi
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Yorky
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Re: is my doc wrong ? pred
« Reply #2 on: Apr 14th, 2007, 5:54pm » |
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you know the feelingwhen you are going to get a 1 million....thats just it the ones, that get through are starting,..to, be very aggrressive.......so off i go with my imtrx jabby......then here iam back in the ritual of ,cant sleep, wont try, feel,tired beast knows.....
if its worseening..less hits, but more .....fkng pain ....so ,out comes to have to use the immatrx 3 times daily(not a lot to some..but it" blows the wind out of my sails)
but what next week.......i was getting 10 to 15 twangs , a day,last week ?
now i have 3 really intense 1 million ones ?a day.
but i should have something else ?
im really looking forward to next week.......half way through a pred.......attacks more intense.....and no back up plan.
he is a good doc.....but as he balls things up.
tired grumpy yorkshireman
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birdman
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Re: is my doc wrong ? pred
« Reply #3 on: Apr 14th, 2007, 6:55pm » |
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I do not understand why he did not have you start with the verapamil. Any pred taper I have done was just to get the verapmil to the correct level. Pred never broke a cycle for me. Ever and I have suffered for many years. Get on the verap if it worked in the past.
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Rosybabe
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Re: is my doc wrong ? pred
« Reply #4 on: Apr 14th, 2007, 9:33pm » |
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he might be a good doc but do not let him experiment with you, please, do what already worked for you before and about no sleeping, why not try melatonin just to see if helps you to get some rest...I feel bad for you...  ...hang in there....PF wishes your way.
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Pinkfloyd
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Re: is my doc wrong ? pred
« Reply #5 on: Apr 15th, 2007, 12:36am » |
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So did the 720 of verapamil do any good last year?
Maybe the doc has been doing some research and is of the opinion that it might make your cycle longer than it would be without the verapamil. Did your last cycle last longer than usual?
Doesn't sound to me that he's experimenting with you. But, he's the one to ask why no verapamil this time. He probably has a good reason.
He's also right about the prednisone, as far as the length of time to be on it. (it does sound like a low dose though....compared to what many of us are used to and is below where many of us see any relief.)
I used to start at 80 and taper down from there. Once I got to 40, they'd return.
As to the two weeks.......the danger is as Guiseppi said.....if you want to experience one of those kip one-millions.....stay on a high dose too long. Been there and done that...ended up in the hospital.
If you stay on it too long, your body shuts down production of it's own form of "prednisone" and you then battle clusters without any built in pain relief....hence the kip one-million. As bad as clusters are, they are buffered by natural pain relievers. No fun going it alone.
Even at 2 weeks, if you don't taper properly, you may need a special shot to get your system going again.
hang in there Yorky...
PF
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TxBasslady
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Re: is my doc wrong ? pred
« Reply #6 on: Apr 16th, 2007, 12:16am » |
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My doc put me on a pred taper 3 1/2 years ago. Taper was for 12 days....started w/60mg for 2 days, then downward taper for remaining 10 days.
I took no prevent...just the pred.
From day 1 of the taper I was totally painfree and remained painfree for 197 days. Day 198 the CH returned. I did another 12 day taper in January of 2005, again w/no prevent, and only got 42 days painfree.
I started taking the Kudzu after the 2nd taper and today, I treat my CH successfully, with no meds other than 02.
I'm one of the lucky ones...
I sure hope things get better for you, darlin'. Maybe your doc is tryin to just see if the pred alone will help. Sometimes, things get real bad right before it starts to get better.
My 1st 2 weeks on the Kudzu were hell. CH bout beat me to death.....then just slacked off and pretty much has stayed that way.
My best to you....
Jean
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