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bluesunshine CH.com Junior Offline Posts: 95 Gender:	Prednisone question Apr 5^th, 2011 at 12:09am Hi all, I would like to know what was your prednisone regimen. My neuro prescribed me 22 days at 70mg and then taper off by 10mg/day (60,50,40,30,20,10mg for a total of 6 days to taper off). I am a little concerned by this steep taper off. thanks,
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bejeeber

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Re: Prednisone question
Reply #1 - Apr 5^th, 2011 at 1:39am

I think you're right to be concerned Blue. And not just about the steep taper.

22 days at 70mg is just plain dangerous IMO and definitely much longer at a high dose than is usually prescribed. The potential permanent side effects from an extended high dose like that are manyfold, and for starters include a devastating blow to your immune system and hip replacement surgery in your near future.

Your doc sounds either extreme, or careless, or clueless, or all of the above, and if it was me I'd refuse that prescription and start shopping for a new doc - and orient as much as possible towards the non toxic (yet very effective) treatments that don't even require a doc

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« Last Edit: Apr 5^th, 2011 at 2:28am by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Prednisone question Reply #2 - Apr 5^th, 2011 at 4:45am I totally agree with bejeeber. Normally a taper dose lasts 1-2 weeks at the most with only a few days at the high initial starting dose. There can be some pretty significant effects from long term use of high doses that should make you stay clear of the proscribed dose schedule.
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Bob Johnson

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Re: Prednisone question
Reply #3 - Apr 5^th, 2011 at 5:45am

The starting dose is at the high end of a typical run of Pred but the total days (22) is questionable.

The most obvious response is for you to confirm that the instructions have been written correctly, that some mistake in writing/labeling has not occurred.

IF the doc confirms this pattern, then you must express you concerns to him directly.

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Bob Johnson

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bluesunshine

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Re: Prednisone question
Reply #4 - Apr 5^th, 2011 at 7:39am

thanks a lot,

I usually get 4-5 weeks cycles (episodic) but now I am almost at my 8th week and I need to put this to an end (after an unsual remission of 2 years due to CB alternative I think). O2 still help but cant have it at work. And I think the zomig starts to give me "recurent\rebound" hits since I'm getting hit every 8-12 hours systematically, depending on the dose (2.5mg rapimelt or 5 mg NS). Cant take verapamil.

So back onto topic, what would be a regular pred taper? Dont worry, I am not starting the pred without seeing him. I am calling today to have an appointment and confirm this with him (He will usually see me within a few days because he knows about CH).

Thanks a lot for your input,
blue

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« Last Edit: Apr 5^th, 2011 at 10:25pm by bluesunshine »

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wimsey1

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Re: Prednisone question
Reply #5 - Apr 5^th, 2011 at 8:07am

There's a new pred taper pack designed for headaches, but though I've used it twice the doses seem pretty low. It starts at 60mg for the first day, and then declines 10mg per day each day. In the past, the most effective pred tapers I've been on started at 80mg/day for two days; 70mgs/day for two days; 60mgs/day for two days; then decrese by 10mg/day each day. Others may have had different experiences. I found it only worked at the highest levels. The CHs returned somewhere around 40mgs/day. Hope this helps. Blessings. lance

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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: Prednisone question Reply #6 - Apr 5^th, 2011 at 8:53am Lance, sounds like you're talking about a Medrol Dospak. This is methelprednisone. Much, much stronger than regular prednisone.
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Bob Johnson

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Re: Prednisone question
Reply #7 - Apr 5^th, 2011 at 9:09am

Blue:Suggest you take the time to download the most recent evaluation of most meds used for CH. Nice gift for you and your doc.

If you don't want to use this approach, send me your e-mail address and I can send a PDF file of the data.
--
This is the single best listing of current therapies, with evaluations of effectiveness, which I've seen.

If you want a single document to drop on your doc in support of a particular therapy and/or to educate him---this may be it. (If you use it for this purpose, include all the reference pages at the end. They provide the evidence which a good doc would appreciate.)

When you hit this link it will require you to register for the site to gain access. The article is 15-pages long.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

==
This report notes: Pred starting dose ranges from 10 to 80mg/day; peak dose for 3 to 10-days, then tapering off over 10 to 30 days.

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Bob Johnson

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bluesunshine

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Re: Prednisone question
Reply #8 - Apr 6^th, 2011 at 12:10am

lance, I remember several years ago the neuro gave me a similar script (which I never took btw since I went into remission as usual after 4-5 weeks). Two years ago, when he gave me this script (22days at 70mg...) I remember asking him if there was no error in this and why this change. He said no but obviously, I dont remember the details of his answer. I still haven't heard from him, but the nurse told me he would call me back within the next days. I need answers.

Thanks Bob for the reference, I registered and printed this for me. The neuro who treats me has been treating headache disorders for more than 20 yrs I think, so he already knows all this.
Thanks to all

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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Prednisone question Reply #9 - Apr 6^th, 2011 at 12:25am Warning: Relying on ANY Doctor to know much about this rare condition, can or will result in less than desirable treatment. Doctors sometimes go by outdated texts, although they mean well. This web site has more info than most Dr's ever will about CH. Don
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wimsey1

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Re: Prednisone question
Reply #10 - Apr 6^th, 2011 at 7:26am

Bob P wrote on Apr 5^th, 2011 at 8:53am:

Lance, sounds like you're talking about a Medrol Dospak. This is methelprednisone. Much, much stronger than regular prednisone.

Yes, that's the name. And I didn't know it was stronger. Good info and thanks, Bob. I wondered why the doses were lower. I didn't think it helped me much, but then again, neither did the last couple of pred tapers. Blessings. lance

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MrHorse

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Re: Prednisone question
Reply #11 - Apr 15^th, 2011 at 1:41pm

I had a much longer taper, and much longer @ 50mg (3 months) instead of shorter at higher. Having said that, combined with verapamil it was the best thing anyone ever did for me - stopped me spending a quarter of each day with 10/10's.

Just because a dose is 'high', cluster headaches are best treated with 'high dose' steroids (opposed to low dose) and the taper is based on things like medical history, general health & fitness, necessity (potential for other drug interactions), future medical plans and ultimately risk to patient. I know I'd trust your doctor to understand the high-dose, fast-taper risks for you more than a group of people on a message board.. even though my neurologist is fairly well-renowned and says 50mg is what he prescribes because he considers it the safe 'unsafe' maximum.

John

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Bob P

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Re: Prednisone question
Reply #12 - Apr 15^th, 2011 at 8:22pm

From Dr. Goadsby:

Quote:

Steroids
Corticosteroids are highly efficacious and the most rapid-acting of the preventative agents. But caution must be exercised in using them because of the potential for serious side-effects. Treatment should be limited to a short intensive course of two to three weeks of tapering doses.

We start patients on oral prednisolone 1mg/kg to a maximum of 60mg once daily for five days, then decrease the dose by 10mg every three days. Unfortunately, relapse almost invariably occurs because the dose is tapered. For this reason, steroids are used as an initial therapy in conjunction with preventatives, until the latter are effective.

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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron. "SHUT UP HUB!"

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