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Title: Vibes needed, and a message Post by Mastifflvr28 on Jun 29th, 2004, 9:58am Dave E is very ill. He is working with a few doctors to find out what is wrong and to hopefully FIX it! He sends a message out to you all about PRED!! Please listen...as what he is going through is NOT cool. Thanks, Mast ********* pasted: A warning about Prednisone use, no matter what your doctor tells you or the manufacturers ... this medication is extremely dangerous and to trust no one ... or paper, they only cover their butts ... not yours. Improper methods of prescriptions and tapering instructions can be fatal. Proper education must be known individually, doctors don't always know what they're doing. ********* |
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Title: Re: Vibes needed, and a message Post by Big Dan on Jun 29th, 2004, 10:01am Damnit, Man! Here's some vibage and prayers going up for Dave... ... tell 'em if they don't get that shit cleared up, I'm comin' to kneecap some bastards.... >:( -Big Dan |
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Title: Re: Vibes needed, and a message Post by thomas on Jun 29th, 2004, 10:21am Vibes on the way. Damn pred. Folks these are some heavy duty meds that we take, ALL OF THEM, be careful. |
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Title: Re: Vibes needed, and a message Post by Bob P on Jun 29th, 2004, 10:24am Pred is wonderful stuff if you use it correctly. It will usually stop clusters dead in their tracks but it does have a whole lot of side effects. I only use the medrol dose packs (7 day taper) to get a few days of rest during a cluster period. Take care Dave and hurry back. |
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Title: Re: Vibes needed, and a message Post by Giovanni on Jun 29th, 2004, 10:51am Dave..........we're all thinking of you. Get well soon. John |
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Title: Re: Vibes needed, and a message Post by Svenn on Jun 29th, 2004, 11:05am Vibes on the way. |
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Title: Re: Vibes needed, and a message Post by Luke63 on Jun 29th, 2004, 11:12am Big vibes from Pittsburgh Dave!!! Luke |
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Title: Re: Vibes needed, and a message Post by Ree on Jun 29th, 2004, 11:20am Dear Lord... send your love to our friend Dave... guide his doctors as they search for an answer... let him fee the love here amongst his friends... In Jesus name AMEN Thinking about you with Love ~~~Ree |
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Title: Re: Vibes needed, and a message Post by Leesa on Jun 29th, 2004, 11:31am Damn!! I hate hearing stuff like this! Mast thanks for lettin us know hun. Dave, we got the vibes and prayers going for ya hun. Get well soon and keep us posted!! Leesa :( |
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Title: Re: Vibes needed, and a message Post by Jayne on Jun 29th, 2004, 12:54pm Come on Dave, you can push through this. You'll be in my prayers. |
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Title: Re: Vibes needed, and a message Post by Gena on Jun 29th, 2004, 1:02pm Pred. sucks Vibes to ya PF vibes that is |
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Title: Re: Vibes needed, and a message Post by Peppermint on Jun 29th, 2004, 2:16pm Dave, your warning is perfectly understood... makes me worry about someone I know who regularly treats his harshest bouts with prednisone, on and off all year long for the most part. :( Positive thoughts to you Dave, get well soon!! Pepper |
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Title: Re: Vibes needed, and a message Post by Elaine on Jun 29th, 2004, 2:26pm Get well Dave and hurry back! Hugs Elaine |
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Title: Re: Vibes needed, and a message Post by JDH on Jun 29th, 2004, 2:32pm Take care of yourself Dave. Jim |
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Title: Re: Vibes needed, and a message Post by ave on Jun 29th, 2004, 2:37pm Vibes on the way, Dave! I am sure we will hear more about this, later. I for one am very interested. |
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Title: Re: Vibes needed, and a message Post by broomhilda on Jun 29th, 2004, 3:04pm Vibes on the way, get well soon, Dave! Mast thanks for passing it on! Pred sucks.... Andrea |
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Title: Re: Vibes needed, and a message Post by jonny on Jun 29th, 2004, 3:09pm BIG VIBES!!!!!! ...........................jonny |
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Title: Re: Vibes needed, and a message Post by Jeepgun on Jun 29th, 2004, 3:28pm Hope you get better soon. My doctor put me on Verapamil and Prednisone during my last cluster cycle. I got the Verapamil script filled. The Prednisone script is still lying in the kitchen drawer. :( |
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Title: Re: Vibes needed, and a message Post by firebrix on Jun 29th, 2004, 5:20pm Vibes from NZ to you Dave! All the best firebrix |
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Title: Re: Vibes needed, and a message Post by Lizzie2 on Jun 29th, 2004, 5:26pm Vibes to you Dave!! I hope you get well very soon!!! Lizzie :) |
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Title: Re: Vibes needed, and a message Post by miapet on Jun 29th, 2004, 5:30pm Sending LOTS of *positive light and energy* stinking doctors and drug companies . . messing with people's lives under the guise of making them better . . .grrrrrrrrrrrr *positive light and energy* D/miapet |
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Title: Re: Vibes needed, and a message Post by Gator on Jun 29th, 2004, 5:42pm Prayers and vibes for Dave. We are all pulling for you here! Ditto to what Thomas said. It's not just pred. Every med we take has the potential to cause us great damage if prescribed and/or used incorrectly. This is why, as Dave said, we as clusterheads need to educate ourselves, so we can know when something doesn't sound right. Thanks Mast! Gator |
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Title: Re: Vibes needed, and a message Post by Grandma_Sweet_Boy on Jun 29th, 2004, 5:53pm Vibes - to Dave - wishes for a speedy resolution! |
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Title: Re: Vibes needed, and a message Post by D on Jun 29th, 2004, 7:43pm Sending Vibes ! Peace and Positive Energy D |
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Title: Re: Vibes needed, and a message Post by Sean_C on Jun 29th, 2004, 8:04pm Vibes from us.............keep strong Dave Sean |
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Title: Re: Vibes needed, and a message Post by Cerberus on Jun 29th, 2004, 8:18pm All the best to Dave E. Vibes incoming Captain! Ramon |
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Title: Re: Vibes needed, and a message Post by Kevin_M on Jun 29th, 2004, 8:47pm Thanks for the important message. Steamshoveling VIBES. Get better soon Dave, them docs better show what the f#ck they know to you. Kevin M |
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Title: Re: Vibes needed, and a message Post by Little Deb on Jun 29th, 2004, 9:06pm Vibes for feeling better soon, Dave. Big Hugs..........Little Deb |
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Title: Re: Vibes needed, and a message Post by Charlie on Jun 29th, 2004, 9:11pm Damn. >:( I hate to read this. :-/ I was told a little about Prednisone years ago too. Rats. Vibes and thoughts Dave. Charlie |
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Title: Re: Vibes needed, and a message Post by Annette_Emond on Jun 29th, 2004, 10:46pm Quote:
Here's the scoop. We still don't have any answers. Dave is going through a battery of tests right now to try and find some . But, the doctors we saw yesterday were unequivocal in their belief that the current symptoms Dave is experiencing are due to an extremely high dose of Prednisone, and a too rapid taper. Furthermore, any doctor worth his salt should have known that after that much Pred, it would be necessary to conduct testing to determine if his own body was still producing it's own cortisol, or if the Pred had shut down that capability. We have to thank PinkFloyd and Cat for bringing this to our attention, as our doctor had no clue when it was brought to his. We are now faced with the possibility that Dave's entire endocrine system has been compromised for life. As I said, we do not have all the answers, what we do have is one very sick man. Please, if you are prescribed Prednisone in any amount for any length of time, ask your doctor about followup testing during and after. In addition, Dave's dad is now in critical condition. But, if all goes as planned, Dave still plans to attend Nashville. He really wants to be there, and although he will wear out real easily, he has a few hugs to give out. In the meantime, I try to keep up with OUCH stuff as best I can and keep Dave informed. He just doesn't have the energy to deal with everything right now. We would both like to thank you all for your blessings and thoughts. We will hang in there, if you all will hang with us. Love to all, Annette |
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Title: Re: Vibes needed, and a message Post by AlienSpaceBabe on Jun 29th, 2004, 10:54pm |
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Title: Re: Vibes needed, and a message Post by cootie on Jun 29th, 2004, 10:57pm A big vibe-a-thon for Dave so the good vibes keep comein on and on and on. Steady stream of vibes Pam |
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Title: Re: Vibes needed, and a message Post by Edna on Jun 29th, 2004, 11:32pm Thanks for the update Annette. Wishing the best for Dave, sending biggest vibes his way. EDNA |
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Title: Re: Vibes needed, and a message Post by BobG on Jun 30th, 2004, 3:32am This really sucks! >:( Prayers going from our house to yours. |
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Title: Re: Vibes needed, and a message Post by juvy on Jun 30th, 2004, 4:19am *vibes on the way* *hugs* juvy |
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Title: Re: Vibes needed, and a message Post by UN_SOLVED on Jun 30th, 2004, 5:16am Good advice about the Prednisone. Hope all is well with Dave. I am very knowledgable about steriods since i've done them so many times. I've also warned others to take as directed and to TAPER properly. I've done Pred, Medrol Dosepaks, DexPaks, Decadron IV's, Solu Medrol Dosepaks and IV's, Solu Cortez IV's, and Cell Cept. These meds are not good for you at all BUT will stop most clusters in their tracks ! SHORT TERM USE ONLY PPL (AS NEEDED FOR A "BREAK") Goodluck Dave Unsolved |
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Title: Re: Vibes needed, and a message Post by suzy617 on Jun 30th, 2004, 7:28am Vibes going out to you Dave. Hang in there! Suzy |
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Title: Re: Vibes needed, and a message Post by Dave_Emond on Jun 30th, 2004, 11:20am Thank you all my Family, A quick note to let you I appreciate all the prayers and support. Today my brother is taking me to see my Dad and a close friend who are both dying as I wait for these new doctors to get test results back and find out if they can help me. Wanted to make a note about the Prednisone. I wasn't prescribed the Pred for CH but for another disorder they haven't diagnosed yet. Even on the high dosage, the Pred didn't touch my CH. I was started on a 7 day Medrol pack then put on 80mg of Pred for 14 days, upped to 120mg for 5 days, then given a taper calendar by my doctor that finished 30 days later. So, even with the taper written out on a calendar by a doc, they can be seriously wrong. When I asked these new doctors, they were shocked I was taken off so quickly and no follow up tests even after I complained often about side effects and strange symptoms. Also asked why it was several months later that I'm now getting hit so hard with new symptoms. They said the damage could be there for much longer, just needs a trigger of some type to start the course showing your immune system hadn't recovered because tests weren't done during and after the taper. So, trusting my doc got me as far as no diagnosis and now another disease on top just for extra icing (thanks doc!). Steroids cause cancers and diseases and can be fatal ... be careful who you trust! (Happy Happy ... Joy Joy!) :-/ Take care, Dave |
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Title: Re: Vibes needed, and a message Post by Leesa on Jun 30th, 2004, 12:48pm Holy Cow Batman!!! :o Can we send out the "hunting party" after the doc? HEHEHHEEE *wicked evil grin* Dave just take care of YOU and know that we are all pullin for ya!!! Annette thanks for the update dear. Now I know why I dont trust doctors 99.9% of the time. >:( With BIG Vibes and prayers, Leesa |
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