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Rex_in_Tex
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Long Term Prednisone Use
« on: May 5th, 2003, 7:50pm »
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I'm a newbie to this board...but not to clusters.  I recently graduated from episodic (six years...3-4 X/year) to chronic (13 months and counting)  You can save the cards and letters...but thanks anyway Wink
 
Prednisone has been a miracle drug for me, in combo w O2.  Kip 10's are rare.
 
My question:  Does anyone have long term (over 6 months) experience with maintainance levels (10-30mg) of Pred? I have no apparent side effects...but I'm concerned about my liver and GI track.  I take a pepcid with each dose.  
 
Rex
 
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Brew
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Re: Long Term Prednisone Use
« Reply #1 on: May 5th, 2003, 8:12pm »
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I've been on 60mg/day for about 2 months now, the longest stretch ever. I'm taking a 15mg Prevacid along with it every day 'cause it tears the crap out of my stomach. Other than wanting to beat the living snot out of anybody who whines at me, the only other side effect I've noticed is that the skin on the back of my hands is starting to look about 10 years older than the rest of me. Or maybe that's just what the hands of a 42-year-old male start to look like.
 
Seriously, I have a call into my neuro to start tapering off because it's been over a week since my last headache. I've heard that the long-term effects of this miracle drug (the gold standard for anti-inflammatories) can be ugly.
 
Bill
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Re: Long Term Prednisone Use
« Reply #2 on: May 6th, 2003, 10:46am »
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Look here.
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Re: Long Term Prednisone Use
« Reply #3 on: May 6th, 2003, 8:03pm »
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I was on 30mg for 5 months and went on 4 to 5 hours sleep a night max and could function top notch.  Felt like a vampire.  Problem was my emotions would intensify and be hard to control during the day.  Weird thing was I started to get hair growth more too - chest and belly.  Never went away.  And of course where I didn'w want it, back of triceps a little bit, where I never had it before.  Nuisance mainly, but definitely a side effect of the damn wonder drug.  Stay away from the heavy doses and long term low doses if at ALL POSSIBLE !  
 
I never tried the non steroidal anti inflamatories (sp?)like indocin yet, but may next if topamax doesn't work out.  I've had great success so far though with topamax  (although the brain lock side effects are a downer so far).  Always gotta pay the piper....  Lotta luck.
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Re: Long Term Prednisone Use
« Reply #4 on: May 6th, 2003, 8:07pm »
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like I said, brain lock is kicking in from the topamax.  my last post started to be incoherent.  I meant to say haven't tried indocin, but would like to if topamax doesn't work out.  Although I have been having many positive signs from topamax so far.  I just hope I can get rid of the brain lock (fuzziness).  All in time hopefully....
 
 
MarkV
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Re: Long Term Prednisone Use
« Reply #5 on: May 8th, 2003, 12:46am »
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Cool Hi, I'm new to the board and interested in learning as much as I can.  
I always thought my headaches were migraines, I've suffered from chronic headaches since Jr High.
I am a 42 year old female.
 
Recently, I had a four day bout of what I learned was cluster headaches. What hell I went through. I fear ever going through it again and it looks like from what I'm reading, the likelihood of that is strong.
<sigh>
 
I'm on a low dose of prednisone, 4mgs, down from five, because of Rheumatoid Arthritis. There are some serious side effects of prednisone, sometimes the cure is scarier than the disease....until the disease takes hold and starts acting up. (I'm talking RA & these demonic headaches.)
 
I've read about Topamax. Does anyone have good results from that medicine?  
I take oxycontin and oxycodone for RA pain. Let me tell you; when neither of those touches a headache, you know they're evil.
 
It's great this site is here.
Nice to see you all.
Be well,
SD
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Rex_in_Tex
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Re: Long Term Prednisone Use
« Reply #6 on: May 8th, 2003, 5:20pm »
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Thanks for the replies.  Ain't it a drag when most of the meds we take have some baggage of their own...
 
I have been on 20mg/day of pred for one year.  Lucky...zero side effects.  Watch my diet...no smokes or caffiene Cry and work out 3X week.  Getting internals checked soon.  Will keep ya posted...
 
Chronichead Rex
 
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Re: Long Term Prednisone Use
« Reply #7 on: May 9th, 2003, 3:12pm »
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Dang, my doc REFUSES to keep my on prednisone for any longer than four weeks.  Tells me it's just to dangerous...  it's a steriod.   Wish I could stay on Prednisone longer, but at 30mgs my headaches come back.
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Re: Long Term Prednisone Use
« Reply #8 on: May 10th, 2003, 10:38pm »
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My long term side effects from 30+mg /day for the last several years are: osteoporosis, increased eye pressure(that I take drops for daily), blurred vision, increased weight of 20-30lbs, fat red round face, stretched stomach, weaken muscles, constant foot pain, hemorrhoids, edema, and difficulty sleeping all night.  I could have missed something. Also, once you have been on it for an extended period, it is very painful and difficult to move when you try to taper off.  
 
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Re: Long Term Prednisone Use
« Reply #9 on: May 10th, 2003, 10:58pm »
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I just started tapering off prednisone
 on Thursday to 70 mg day from 80 and woke up this morning at 6:30 with one starting, took an Imatrex nasal spray and it worked after 1/2 hr and then at 9;30 pm I had the worst attack in recent memory, Damn it hurt..... Took an Imatrex injection and in 7 minutes I was Ok..
Dosnt look like I will be going to bed early tonight or at all,,, Too scared to go to sleep..
I think I have 3 injections left and wont be able to get any more Until late Monday so the panic is starting to hit me..  
If someone can come up wuth something that works as good as prednisone and no side effect he or she can have my car and house.....
 
Im sure this will pass but after taking prednisone for a week I get just a we bit cranky and feel like crap..
I think Ive eaten 4-5 full meals already today and need more food now......
 
Have a Great day  
       Wayne
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Re: Long Term Prednisone Use
« Reply #10 on: May 16th, 2003, 12:15pm »
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Roll Eyesno side effects yet - ive been on pred for 1 yr now - 60-80mg a day - just alot of weight gain thats all (that's enough) i suffer so bad though that even at 80mg i still am suffering right now
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Re: Long Term Prednisone Use
« Reply #11 on: May 17th, 2003, 12:41am »
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i dont post much on this drug but i feel a need to this time. i hate this drug it is not made to take for no more than six months at a time!!! i dont care what nobody else say's long term side effect's will kill you . how do i know it killed my mother! but she had to take it for over 12 years it prolonged her life but it also took it. she died  of it.  i do take it when i start my cycle for about a month at a time.it has broke my cycle a few times. it will put a lot of weight on you to . i have took it longer than a month at a time before. my dr. has to fight me evertime he puts me on it. i dont wont to scare anyone it does help me. but not a long term drug for me.(this is for me only) i cant speak for anyone else.  please be carefull everybody takeing this drug. i don't wont to see nobody else pay the price like my mother and my famly has.  ken
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Roxy
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Re: Long Term Prednisone Use
« Reply #12 on: May 17th, 2003, 8:49am »
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on May 10th, 2003, 10:58pm, W_Perry wrote:
I think I have 3 injections left and wont be able to get any more Until late Monday so the panic is starting to hit me..  

 
Wayne, have you checked out the imitex tip to the left?  It really helps in making your shots stretch a little further.
 
Sorry I'm no help with the Pred.  I turned it down from my doctor.  
 
Tracey
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