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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> PREDNESONE EXPERIENCE
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Message started by Marc48 on Sep 28th, 2009 at 11:38am

Title: PREDNESONE EXPERIENCE
Post by Marc48 on Sep 28th, 2009 at 11:38am
Hey all....Marc Here :-/
I would like to hear about any experiences with the short vs. long term use of Prednesone....This is the third time I have used this drug.....the 1st time, 2005 was 10 days and it aborted the cycle, but I think I was at the end anyway.  The second time, 2007 I was on it for about 2 months, 30 mg per day and I had a real hard time coming off of it....stopped cold (didn't know I had to taper off, doc never told me) and boy did I suffer for about 8 weeks :-[...and now I have been back on it for a week....doc started me at 70 a day for 4 days and am tapering down to a maintenance level...the doc said that he is not too concerned because I am only on it for about 6-8 weeks every 24-30 months.  I have read just about everything I can....I was just wondering if anyone can shed anymore on the subject :-?.....Thanks in advance and Wishing all PFDAN.

Title: Re: PREDNESONE EXPERIENCE
Post by bejeeber on Sep 28th, 2009 at 12:10pm
For starters there's this current thread over on the Cluster Headache Specific forum: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

It's heavily weighted towards reports of bad experiences.

That was an astonishing, criminal act for your doctor not to have told you to taper!!!!!!  :o >:(

Hopefully this is a different doctor you're working with now?

My impression it that it's when you're on sustained doses in the range of 60-80 mg per day that you can really get into some permanent trouble, but I'm no expert.

Title: Re: PREDNESONE EXPERIENCE
Post by Marc48 on Sep 28th, 2009 at 12:19pm
Thanks Bejeeber.... But no, it is still the same doc and he was so apologetic that I thought he would cry...he is a good neurologist and was the first to really give me some relief that worked.....My problem with this Prednesone is not knowing what they really consider long term....is it weeks or months  that is considered long term?  And I have confusion on what is considered high dosage....30,40,50 mg???  It is funny even after 26 years of the beast, I'm still learning!!!! ;)

Title: Re: PREDNESONE EXPERIENCE
Post by bejeeber on Sep 28th, 2009 at 12:44pm
My impression is that 60-80 mg is considered high dosage (I was usually on 60), and at that dosage, a couple weeks would be be considered long term, pushing it to the limit.

Months would be dangerous as all hell and fraught with peril.

I imagine we'll get some more knowledgeable people piping in about it here too.  :)

Title: Re: PREDNESONE EXPERIENCE
Post by Bob_Johnson on Sep 28th, 2009 at 1:32pm
The general pattern is to use Pred in decreasing doses for about 10-days and then stop. BUT, at the same time, starting to use a long term preventive such as Verapamil. It takes 2-3 weeks to take effect (and some dose adjustments are common) but it can be used continously. It will either reduce the fequency of attacks or, if you are fortunate, stop them totally.
=======
Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
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Also show to your doc:
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
=========

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive
and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
 
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
============================================

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

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Title: Re: PREDNESONE EXPERIENCE
Post by Aussie6330 on Sep 30th, 2009 at 5:17am
Sorry to see you here Marc,
Can only relate what my Doc did.  Put me on Prednisone 25mg x 7 days followed by 10mg x 4 days, followed by 5mg x 3 days.  This was immediately followed with 160mg Verapamil daily.  Fingers crossed it seems to have done the trick.  Hope it helps dude and wishing you a very short cycle.

Cheers from Down Under   :D

Title: Re: PREDNESONE EXPERIENCE
Post by Emma_s on Oct 1st, 2009 at 9:39am
I cannot believe a doctor wouldn't slowley lower the dose if you have been on them long term, its pretty common! Sorry to hear you had such a problem :(

I have a very long history with this medication, not from a cluster point of view by regarding my asthma. When I was younger I had very serious asthma and was on the steriods for weeks at a time, but as soon as I came off of them I would end up in A&E and not being able to breathe. I did the 'on and off' thing for 9 years. I think personally I was lucky as when I came off them completely I did struggle and boy did I suffer but the only after effects really I found was that my skin has remained thin, I shake a little (though this is gradually going), I still have a roundish face (the 'moon' face) and it did stunt my height (I did have a growth spurt about a year after being off of them!)

I think it is important that they are managed in a proper manner (coming off them slowly). During my years of being on them, I saw a different doctor and she refused to give me my prescription and I was on 40mg at the time - my mum was very angry on my behalf and that was sorted out quickly.

Title: Re: PREDNESONE EXPERIENCE
Post by Joni on Oct 1st, 2009 at 12:12pm
I will only use in case of emergency now.  Years ago, I was given this and it worked miracles to stop the cycle but I couldn't get off of it without having another cycle (even on the other side of my head which had never happened before) and the side effects were horrible!  It ended up taking a total of 9 months to get completely off of it and I will never be the same.  Be careful.  Use only for short term and taper slowly!

Joni 

Title: Re: PREDNESONE EXPERIENCE
Post by MadHatter on Oct 1st, 2009 at 9:17pm
Marc,
Prednisone is surely nasty stuff. Every time I've been on it (about 6 times in the past 10 years), it's been a tapering dose for about 10 days. It has worked about 80% of the time to break the cycle enough for Verapimil to take root, but each time, I become almost impossible to be around and found my kids or any irritant unbearable.
The worst result I personally know of is with my brother who, out of desperation, had 100 mg Prednisone via IV. His doctor did not warn him of the potential risk and it has pretty much made him a cripple. High doses of prednisone can affect blood flow to the bones and now both his femures are dead, meaning no blood flow and brittle. He can no longer do anything physical that may cause a break (such as falling down) and is in terrible pain most of the time. He's also having joint pain and swelling, though they don't know if the Pred is the cause or something else.
Hope it all works out for you. I've had excellent success with Taurine. Cheap and no ill effects.

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