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        Cluster Headache Help and Support >> Cluster Headache Specific >> Prednisone
        
(Message started by: Sprecco on Dec 28^th, 2005, 11:49am)

Title: Prednisone
Post by Sprecco on Dec 28^th, 2005, 11:49am

Hi gang. I'm back after what felt like 20 pain free years, my wife claims it wasn't quite two years. Who has had luck with prednisone, what dose did you take, how did you spread the dosing out? Was it strictly a short term fix to buy a few days sleep? Did anyone have luck with aborting a cycle? Has anyone convinced a doctor to let them take it for a full 2 to 4month cycle? Thanks in advance, I'd say it's great to be back but you all know better...

joe

Title: Re: Prednisone
Post by MJ on Dec 28^th, 2005, 1:38pm

Joe

I had some luck with prednisone several times.
It was allways a short term fix for me when I couldnt take the CH anymore. But it did give a much needed break at the time way back then.

The last time I used pred was at around 140mg for a bit then tapered off over a period. CH returned after the taper was done.

There was a recent poster here who used something like 20mg every day.

Maybe Try RC seeds many are having good and better results with them and with less side effects.

MJ

Title: Re: Prednisone
Post by burnt-toast on Dec 28^th, 2005, 1:54pm

This isn't going to help much but here goes.

First pred. taper absolutely worthless - taken during peak attack periods.

Second pred. taper may have leveled out attacks - taken just as typical seasonal ramp up in frequency/severity of attacks began.

Key words are "may" and "leveled out", it has not stopped or reduced frequency/severity, they just haven't ramped up yet. Unfortuantely I've also begun (under supervision of my Neurologist) varying meds./off the shelf alternatives and can't be entirely sure what has helped to level out my attacks.

I have a third Prednesone prescription currently sitting around but I find myself struggling with potential side effects vs. end results. So for me right now it's 65 No/35 OK.

BTW: Each taper involved a totsl of 520mg starting at higher doses and tapering off over a two week period

Tom

Title: Re: Prednisone
Post by maffumatt on Dec 28^th, 2005, 4:48pm

Didn't help me at all...............
Had a large (don't know how much it was) shot and a 10 day or so pill taper.

Title: Re: Prednisone
Post by Dave on Dec 28^th, 2005, 5:40pm

I have been prescribed corticosteroids for two CH cycles.

With one episode, I took Prednisone for 5 days and had relief for those 5 days. But the CH's came right back after that. Then I took it for 5 more days with Verapamil and that was the end of the cycle.

With another episode, I took Prednisone with Verapamil for about a total of about 15 days and got relief on the majority of the days that I took it. But it did not end the cycle.

Most physicians will not prescribe more than 10-20 days worth due to side effects.

Title: Re: Prednisone
Post by Sprecco on Dec 28^th, 2005, 6:15pm

As much as I didn't miss the the headaches, it's good to be back with y'all. My neurologist isn't available until the 11th so I'm trying to get my ducks in a row! Thank you all so much for the input.

joe

Title: Re: Prednisone
Post by chewy on Dec 28^th, 2005, 10:43pm

Quote:

Did anyone have luck with aborting a cycle? Has anyone convinced a doctor to let them take it for a full 2 to 4month cycle?

First question: I use a prednisone taper as a first line attack every cycle. Aborts 9 out of 10 times IF and only IF I have allowed a theraputic level of verapamil to take hold first. That ussually takes me 2 weeks

Second question: You shouldn't have to. Refer to my first answer. If you allow a preventative to reach a theraputic level your chances of the prednisone taper aborting the cycle are pretty good. If not you can try a 2nd round of a taper.

*BONUS ANSWER* While waiting for the verapamil to take hold and during the taper I use melatonin. It gets me the extra sleep I need for energy to do battle.

Title: Re: Prednisone
Post by LeLimey on Dec 29^th, 2005, 7:16am

Prednisone is a nasty old drug if you are on it for too long. Ask Lizzie2 who now has avascular necrosis or me who has steroid induced cataracts. I wasn't on pred for ch, it was a different condition but if I knew then what I know now I wouldn't have accepted it blindly and I would have asked about possible alternatives too. A 2-3 week taper is quite long enough to be on it and if you use it as Chewy suggests then you'll get the best results from it.
Wishing you well!
Helen

Title: Re: Prednisone
Post by zwibbs/Scott on Dec 29^th, 2005, 8:00am

My Neuro gave me 80 prednisone with 480 verap per day---first 7 days/ Then the next 7 days 60 pred / 480 verap / next 7 days 40 pred--600 verap--and so on. The only problemwas it took about two weeks for the whole thing to become therapeudic and work----but since Dec. 11th I've had pain free nights with only three minor attacks during the day--Good Luck--the 11th will be here before you know it !

Title: Re: Prednisone
Post by Guiseppi on Dec 29^th, 2005, 12:38pm

To Chewey and Zwibbs...........

I'm curious about verapamil. I tried it about 15 years ago with no success, about 240 mg daily I think but it's been a while so I'm not positive on the dosing. I wasn't on it very long, I think less then two weeks. I was still going to a family practitioner....I'm with Kaiser so getting the referral to neuro took a long time. To his credit, my doctor did a lot of research on cluster headaches and for his time was ahead of the curve compared to most. It's possible we didn't give verapamil enough time to hit therapeudic levels. My treatment of choice had been lithium, 1200-1500 daily depending on my current weight..(damn, it fluctuates with midlife)....Had you tried lithium, and was verapamil any more/less effective, and how'd you compare side affects with the two? Thanks in advance.

Guiseppi

Title: Re: Prednisone
Post by chewy on Dec 29^th, 2005, 3:58pm

Its very possible that your dosage was to low as well as not giving it enough time.

I take 480mg a day and its ussually around 2 weeks before I have any real effect.

Title: Re: Prednisone
Post by zwibbs/Scott on Dec 30^th, 2005, 1:04am

Hey Guiseppi--When I started with the Verapamil, it was at 480mg ( 2 pills of 240mg). It took over two weeks for it to take effect. To the credit of everyone on this board--they told me exactly the way it was going to work. I took it with prednisone and my Neuro started with 7 day stages. I decreased the prednisone and raised the verapamil.......After the start,( the initial two weeks) I have had NO Ch attacks during my sleep !!! Only minor attacks during the day. I think that when you took the verapamil a couple of years ago--that you didn't give it the sufficient time to work. Let us know what happens---and great luck with whatever you do...HAPPY NEW YEAR !!!

Title: Re: Prednisone
Post by E-Double on Dec 30^th, 2005, 1:18am

also might want to consider asking for standard release verap instead of ER much more effective

Title: Re: Prednisone
Post by cardogman on Dec 30^th, 2005, 8:11am

When this first started with me the Neurologist gave me a prescription for the following dose of Prednisone.

20mg 3times a day for 2 days
20mg 2 times a day for 2 days
20mg 1 times a day for 2days.

Does anyone have any experience with this dosage. Too high? Too low ? to long ? too Short ?

As I said in a previous post I spend a lot of time in the O.R. but I'm not a doc. I am a non practicing R.N. and the Distributor for a leading Orthopedic Implant Company This means I distribute the Internal Joint Replacements, ie: Hip, Knee, Shoulder, and more. Femoral Head Necrosis is caused by Prednisone and other long term use of steroids and even though the above dose is very short I am deathly afraid of that stuff. I have seen more fractured hips and other joint replacements done because of steroid use then I care to. Of course there are other organs like the adrenals that are affected. I know I am putting the cart before the horse but this stuff scares me.

Can someone tell me what the side affects are if I were to try the stuff. It seems to me that after reading the posts it's temporary. Has anyone ever taken it and the CH went away for a long priod of time.

I think yestrerday was the worst day I have had. 3 or four episodes. Oxygen helped only for an hour or less and right back. Felt very foggy in between and restless.

Og BTW one other thing. Has anyone ever slept well through the night, woke up in the morning without any symptoms at all even sensitive head gone and within 20 minutes or so of walking arounfd and getting ready for the day the Sensitive head and forhead and the eye pain come back.

Burt

Title: Re: Prednisone
Post by Guiseppi on Dec 30^th, 2005, 9:55am

I get complete relief at 30mg prednisone a day. 15 mg am and 15 mg at bed time. I don't know if it's like some of the other drugs and it varies by your size but for comparison purposes I'm 190 lbs. I'm taking some now that a friend gave me. (I know, bad habit, non prescribed etc. but when you're a Kaiser patient you find they are not a terribly compassionate or caring group. They think nothing of scheduling your first appointment 4 weeks after your cycle starts.)

When I finally get in to see my neuro I'll get back on my lithium and then taper off of the prednisone....I haven't decided if I'll even let him know about the prednisone cuz it makes them mad.

The side effects of prednisone are bad, just a matter of picking your poisons i guess.

Guiseppi

Title: Re: Prednisone
Post by burnt-toast on Dec 30^th, 2005, 10:12am

on 12/29/05 at 12:38:49, Guiseppi wrote:

240mg Verapamil daily for two weeks may not have reached sufficient blood serum levels to be therapeudic. Treatment with a combination of Lithium and Verapamil is fairly common. 1200mg Lithium Carbonate and 720mg Verapamil daily are my base meds. I add or adjust everything else from here.

Both have side effects to be aware of (just about everything we are prescribed has side effects but Prednesone's are worse than Lithium or Verapamil), the following links should help but ask your pharmacist and you can often get additional information.

http://www.nlm.nih.gov/medlineplus/druginformation.html (Good but more basic information)

http://www.drugs.com/ (You can do a top line search for your med. or scroll down to "Browse by Information Type:" there seems to be more detailed information avaliable under the various opitons here.
More detailed information is available including common dosage levels.)

Tom

Title: Re: Prednisone
Post by burnt-toast on Dec 30^th, 2005, 10:30am

on 12/30/05 at 08:11:08, cardogman wrote:

For prednisone

For oral dosage forms (oral solution, syrup, tablets):

Adults and teenagers: 5 to 200 milligrams (mg) every one or two days, as a single dose or divided into several doses.

Children: Dose is based on body weight or size and must be determined by your doctor.

Length of use seems to be left to your doctors descretion. The Neurologist's I've worked with seem to be very leary of continuing usage beyond 2 weeks and if use is to be extended, reduced daily doses are typically prescribed.

I posted two links above that provide presecription drug information but always like to add "ask your pharmacist and you can often obtain some additional informationl.

Tom

Title: Re: Prednisone
Post by chewy on Dec 30^th, 2005, 11:50am

Quote:

The side effects of prednisone are bad, just a matter of picking your poisons i guess.

Yup and exactly. You have to do a personal cost /benefit analysis. Fortunately the only side effect I have is increased appetite. Thats fine because I ussually have weight loss during a cycle and the added food gives me energy to fight.

Quote:

20mg 3times a day for 2 days
20mg 2 times a day for 2 days
20mg 1 times a day for 2days.

Does anyone have any experience with this dosage. Too high? Too low ? to long ? too Short ?

Never heard of a taper using exacy dosages. My taper starts at 80 mg and I taper dosage in time which is 2 or 3 weeks.

Title: Re: Prednisone
Post by Guiseppi on Dec 30^th, 2005, 12:00pm

You've given me a whole page of cut and paste to take to my neuro....I'll be well armed. I never cease to be amazed at the collective knowledge of this group and their willingness to share it. Loff y'all!

Guiseppi

Title: Re: Prednisone
Post by chewy on Dec 30^th, 2005, 7:13pm

I have a very aggresive neuro. His motto is my motto. Hit them hard and hit them fast.

Title: Re: Prednisone
Post by Jasmyn on Dec 30^th, 2005, 9:32pm

Hi Joe.

My last cycle lasted 15 and a bit months, I don't know if it just naturally stopped eventually or it was the increase in meds my Neuro prescribed.

I used to be on 240mg/day Verap, he upped it to 840mg/day:

240mg morning
240mg afternoon
440mg night

Also he took me of the slow release type onto the immediate release. Obviously had to taper over a month period.

With that he prescribed a Pred 180mg/day

60mg morning, afternoon and then at night only for 2 weeks.

I have no access to O2 and are allergic to Lithium, those would have been my choices.

Pred is not good for you and no meds are but if it works, it works. Personally I hate meds, especially pred but then again I hate CH more.

My weight is about 120 lbs and I have very low blood pressure, I'm still not dead and my cycle has been broken.

Sometimes after years of using a type of med it stops to work, so your doc will increase the dosage. If that does not work anymore it is time for a new cocktail.

But rightly like everyone said, you have to give the Verap time (about 2 weeks) before it starts to become effective.

Good luck and PF wishes to you.

Title: Re: Prednisone
Post by zwibbs/Scott on Jan 1^st, 2006, 2:35am

Two weeks exactly !!!!

Title: Re: Prednisone
Post by StressFree on Jan 6^th, 2006, 3:33pm

I've used Prednisone in the last two cycles. It helped a lot, but I did have some really bad "break through" attacks. Mostly left with residual tollerable burning in temple when normally a full KIP9to10 would be expected. 20mg 3 times a day for a week and then a week of taper. This and starting 180mg SR Verapamil twice a day at the same time seemed to be a good combo. I was done in under a month last time. Used Maxalt alternating with Stadol NS successfully during the last couple of weeks for aborting break through attacks.

Previously taking high doeses of Prednisone, without the verapamil, I experienced really high blood pressure(pounding heartbeat heard and felt in ears-especially when laying down). I never had the odd "personality change" side effects, but maybe some "euphoria" - oh yeah, that was because I wasn't getting hit with KIP9-10 several times a day and night! A very dangerous drug, don't stay on it long and use a taper off for sure!!! Best of luck to you all - Rich

Title: Re: Prednisone
Post by biscohead on Jan 6^th, 2006, 11:54pm

I really hate to admit it, but it worked for me. I HATE what the drug does to me though. HORRIBLE side effects that had me wondering if it was worth it (it was of course).

But it has always helped me sustain through my cycles. It cuts down my attacks to almost nil and that attacks I did have were much milder in comparison.

Side effects are horrible though. No sleep, too much eating, very lethargic feelings, acne...etc. The usual I guess. I have been off of it for 2 weeks now since my attack period stopped, but I am still feeling the effects of the prednisone. My advice, give it a shot....but if it doesn't work well get off of it immediately.

Title: Re: Prednisone
Post by Guiseppi on Jan 7^th, 2006, 12:12am

And that in a nut shell is the problem. At 30-40 mg a day it's a complete block. And since I'm a Kaiser patient when my cycles start it takes 5 weeks to get an appointment with a doctor. It took a fu$%ing act of congress, A week of harrasing phone calls, (3 hours of raising hell at member services)...just to get my oxygen again! I prefer to get back on lithium but that requires all of the blood draws and monitoring so I don't go toxic. What that leaves me with is nothing to help me for 5 weeks, and I can't do that. So I put the word out to all my friends, and stockpile prednisone to last me till my appointment. So it's been 4 weeks at 30 to 40 mg a day. headache free, high blood pressure, zits on my back like a teenager, irritable as hell and about 7 pounds heavier.

Loooong post but a nice vent. love you guys for listening to me.

Guiseppi

Title: Re: Prednisone
Post by djsound on Jan 7^th, 2006, 2:13pm

I have been trated with corgard and prednisone for over twenty years. I had my last cycle three years ago and I presently just started a cycle. I take 20mg pills of Pred. 1 in the Am and 1 at night. 40mg of corgard (betablocker) at night and 20mg in the AM. I can only take the pred for two weeks at that strengh before there could be some damage to internal organs, but given the choice of a chance of some damage and a full blown CH , I take the pred. The last cycle was severe and using the combo and I added melatonin 3g , ended the cycle early and for three years. This cycle I might have to boost the pred at night to keep IT away. You will develop a Pred face (kinda round and full) but when you stop it will go back to whatever is normal. Good luck, I think this way has been better than shooting up trex, I am not chronic so those who suffer every day of their lives have to go thet other way.

Dan
OHIO

Title: Re: Prednisone
Post by StressFree on Jan 9^th, 2006, 12:56pm

Guissepi,
definately listening, and agree it's always good to vent. I'd get on the verapamil right away. It helps with the blood pressure, and of course is often a most effective treatment as well. They say it does take up to a couple of weeks for the verapamil to be fully effective. Perhaps when you finally visit the doc, he can give this to you and start a taper off of the pred. 4 weeks sounds like a long time to be on prednisone with out starting a taper. Hopefully you will be done with cycle soon anyway! Rich