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sue-bee
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Trying to understand prednisone
« on: Jul 15th, 2002, 10:25am »
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I've starting taking prednisone (as prescribed by my doctor); 50 mg for 5 days, then tapering down for a today of two weeks on the medication.  I had CH's every day (at least one, sometimes two or three) since May 21st.  After two days on this medicine I have just gone for 24 hours without a headache (I had forgotten how good it feels to NOT have a headache, or be on the verge of one, or waiting for the next one....).  Anyway, two questions--one--will this last? and two, how does it work  to get rid of the CH cycle? I'm also interested in any side effects people have had.  The literature is full of them (some almost seem worse than the headache, but not quite!).  So I'm happy for the moment, but a little skeptical.
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Re: Trying to understand prednisone
« Reply #1 on: Jul 15th, 2002, 12:24pm »
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If you are episodic, it might break your cycle and give you thereby some months of relief.  If you are chronic it will last only as long as you are taking it.  I have taken a round of pred. several times.  I am chronic so it only did as I describe above.  It also made me gain a lot of weight.  Your appitite is amazing and anyone who stands between you and food might get killed. If you have any aches and pains over your body they will go away when you take it.  This short round will do you no permanent harm.
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Re: Trying to understand prednisone
« Reply #2 on: Jul 15th, 2002, 12:47pm »
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I've been on Prednisone several times over the years.  Now I REFUSE to let Dr's give it to me again.  I use to get some relief from it during a bad episode but the side effects were HORRIBLE for me.  I could eat, and eat, and eat, and eat and never feel full.  Since I am already overweight this is not really a good thing for me.  The skin on face would clear up & be beautiful yet my chest would get completely broken out.  I would be extremely thirsty all day long and even during the night.
I would have to eat constantly at my desk and if I wasn't eating I would feel like I was going to pass out.
A couple of times I had some really bad episodes when I was trying to "ween" off of the prednisone.  I started sweating from head to toe and almost passed out.  The last time I tried a round of prednisone, it didn't really work for me so there's no way I'm doing it again.
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Linda T
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Re: Trying to understand prednisone
« Reply #3 on: Jul 15th, 2002, 8:06pm »
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Dear Sue-Bee.
 
I was on prednisone twice during this current cycle. (Cycle started November 01 and still going).
 
First round was in January.  I had a twelve day course.  Started 60mg for 2 days, then 50mg 2 days, then 40mg days, etc.  It worked very well until I hit the 20mg dose.  It worked from the day I started it and was a welcome break from the pain.  Unfortunately, it did not break this cycle.  I was on another round (same as above) in April.  It did nothing.  However, I'm not sure that I can agree with Clavers that this indicates that I am chronic.  Maybe I am.  Only time will tell.
 
Currently under control with 120mg Inderal LA daily.
 
Side effects of the pred were minimal.   I do agree with the increased appetite.  I also had vivid (and I mean VIVID) nightmares.  That was about it for me.
 
Good luck.  Wishing you PFDAN always, Linda T
 
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Re: Trying to understand prednisone
« Reply #4 on: Jul 16th, 2002, 12:02pm »
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sue-bee,
 
Prednisone is the only thing I have ever been prescribed for my CH. At least my new Doc knew enough to do that for me last year when she figured out that I had CH instead of the sinus infection the dumbass in the ER diagnosed me as having the cycle before that one.
20mg every morning X7, then 10mg for another 7, but can continue it for another week if needed.
I asked her this time about giving such a small dose since I had been reading here that many had been given much larger. Her response was that yes, I know you are in terrible pain- I've watched you try to put your head through the floor of my exam room, but your liver might as well be the liver of an alcoholic for the shape it's in, and I don't want to damage it any more than it already is, especially since you have something that you can do for yourself that aborts the headache.
Here's the results of prednisone for me, if it helps you out any:
(please note that I take a much smaller dose than most clusterheads)
Day 1: nothing
Day 2: nothing
Day 3: nothing  
Day 4: nothing notable until late in the afternoon- no regularly scheduled 7:00pm attack. Slept all that night without an attack of any kind.
Day 5: no attacks during the day, got hit twice during the night with 9's.
Day 6: no attacks during the day, got hit tree times in the night with 9's.
Day 7: today been pain free so far, tomorrow starts 10mg X7 days. Will probably get hit during the night tonight a couple of times.
 
Summary: Marked decrease in number of attacks during sleep, no attacks during waking hours since Saturday afternoon (day 4).
No notable side effects from prednisone such as appetite increase, etc. except for decrease in wound not healing as fast as it should.
 
Another note: The first ime I was treated with prednisone, it was at 40mg a day X7 then 20mg X7, and was also given Nasacort AQ (another steroid, sprayed up the nose) at the same time. I suffered through the dry nose and nosebleeds from that, but since I experienced severe potassium depletion, elected not to use thenasal spray this time.
Click the button water x 3. You'll see that LOTS of water helps CH a lot, but prednisone by itself will deplete potassium, and large amounts of water will aslo flush much needed electrolytes from your system. Take a potassium supplement. I recommend Potassium and Magnesium Aspartates available at GNC if you have one near you (such as at the mall). Take 1 cap 3x daily WITH FOOD!
 
I appologize if my post seems long-winded, but i figure if I'm gonna make a post, make sure that the info is useful and leaves as few questions as possible.
Sorry you had to suffer a terrible affliction to find us, but since you're here, pull up a chair, read read read, and don't hesitate to ask for help or support, we all know what you're dealing with.
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sue-bee
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Update on my experience
« Reply #5 on: Jul 16th, 2002, 12:34pm »
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Wanted to give an update of my experience thus far.  I succeeded in going 32 hours without a CH on day 3 of taking prednisone, but unfortunately, I got hit with one at 5:30 p.m.  I am taking Imetrex nasal spray and that gets rid of it fairly well.  The intensity of the headache wasn't as great, so maybe that was a result of the prednisone.  (one ironic side note about all of this:  the cost of Imetrex is so astronomical -- $20.00 per dosage and the cost of the prednisone is so much less, as well as the ESGIG plus pills I'm taking-- it makes me realize why the drug company has advertisements for Imetrex in all of the women's magazines).  Anyway, I am still hopeful, but I was hoping the prednisone would be a cure-all right away.  One other note--about side effects.  I'm experiencing insomnia (not a good thing) and some weight shifting (at least it looks that way to me), but no acne or appetite increase.  I'm sure it varies from person to person, but it's still a little scary.  I still have 10 days to go on this drug, but I'm totally sick of having headaches, I'm at  a point that I don't even care about the side effects.  By the way, I am episodic, I've had these episodes once every two or three years for the past 30 years (was mis-diagnosed as sinus or allergies or migranes for years until about 10 years ago)  So at least I know what's wrong with me, and that there is an end to this.
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