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        New Message Board Archives >> Jan-Mar 2004 >> Question!
        
(Message started by: helpless23 on Feb 9^th, 2004, 1:12pm)

Title: Question!
Post by helpless23 on Feb 9^th, 2004, 1:12pm

Hi all,

Ok, I posted a couple of days ago that Ken was on the 7 day dose of Prednisone and 2 Endomethacin a day. He has been PF for 2 FULL DAYS now! Yay!

We have no idea which meds are working. In your guys opinion, which do you think it is? Prednisone? Endomethacin? Or the cocktail of both?

Just wondering because I would really HATE him to have to go long term with Prednisone. I know that there could be some really nasty side effects. None of which he's really had yet (thank God), but I'm curious. Do you think that it could be the endomethacin?

Any input would be fantastic!

Thanks!
Toni

Title: Re: Question!
Post by PatFan on Feb 9^th, 2004, 1:24pm

I was on both of those several times and here's my take..... The indomethacin worked for about 24 hours for me, then I got hit as hard as ever. I dropped it like a bad habit. The prednisone gave me some much needed relief, although after three tapers and taking it pretty much for 6 weeks straight, my hips got so sore I could barely walk (not exaggerating). I'm no doc , but I have a hunch the prednisone is working...... my two cents

Title: Re: Question!
Post by helpless23 on Feb 9^th, 2004, 1:26pm

on 02/09/04 at 13:24:14, PatFan wrote:

Hi Pat!

Thanks for the input. See, he's on both, so it's hard to tell which one is working. Why did you have pain in your hips?
Is there a really good website out there that can give me more information on the side effects of this stuff that you know about?

How are your CH's now? Are you taking anything else that helps?

Toni

Title: Re: Question!
Post by PatFan on Feb 9^th, 2004, 1:36pm

The mechanisms as by which prednisone causes the bad side effects can probably be explained much better by others on the board, there are some really educated people when it comes to medicines. Keep checking and I bet someone will shed some light on that one. I have seen other posts where they had hip pain also. One of the typical treatments is to begin a Pred taper for a copule of weeks, and at the same time start Verapamil and when the Pred taper is over, the Verapamil has begun to work. I currently take Verapamil 240 mg a day and will go to 480 if the shadows get worse and have o2 to abort. I know that if someone has CPH, indomethacin almost always works, but more often than not it is not effective in the treatment of CH.

Title: Re: Question!
Post by 357Mag on Feb 9^th, 2004, 2:17pm

Hi Toni,

I have used Prednisone for non-CH problems, especially alergic reactions. But then it was merely a 7-day taper and done.

Here is an RX information site I used when preparing my paper for the first visit to my nw Neuro. It gives some very good informatin on warnings and contraindactions as well as when and why certain medication are usually choosen.

http://www.rxlist.com/cgi/generic/brand.htm

Hope this info helps, and my best to you and Ken,
-dan

Title: Re: Question!
Post by eyes_afire on Feb 9^th, 2004, 2:28pm

Hi Toni,

If he truly has CH (and not CPH), then the odds are overwhelming that it is the prednisone that is helping. If, on the otherhand, he really has CPH, then the odds are overwhelming that the Indomethacin is helping. Indomethacin may be helpful for only a very very small percentage of clusterheads. Because Indomethacin has comparatively few side effects, is dirt cheap, and can rule out the possibility of CPH, it is a good thing to try early on. But....

Unfortunately, a vast majority of clusterheads find that once the prednisone is tapered down, the cluster headaches will return. For only a very very very small percentage of clusterheads is prednisone able to abort a cycle. Because of this, prednisone is usually only taken as a stop-gap measure to buy some time while another preventative medicine has time to build up in the body.

For example.... start taking prednisone and verapamil simultaneously. That way the prednisone works while the verapamil gets into the system (could take a week) and then the verapamil works while the prednisone is being tapered. I absolutely would not want to stay on prednisone for an extended period of time. In my opinion, prednisone is scary.

Bottom line... Indomethacin is a very low percentage CH preventative and Prednisone is usually only a short term preventative.

My advice... plan ahead. Be prepared to give another preventative a try. It is very likely that his CH will return when the prednisone is tapered down.

Side note.... I don't want anyone to get the wrong idea, I'm not bashing Indomethacin. I've tried it, and I think more people should probably give it a try. It's primary drawback is that it is a very low percentage med for CH.

--- Steve

Title: Re: Question!
Post by Bob P on Feb 9^th, 2004, 2:35pm

Bet it's the prednisone.

Indomethacine will usually do nothing for a cluster.
Prednisone stops my attacks dead in thir tracks but they come back when I get a day or two from ending the taper.

Title: Re: Question!
Post by brad267 on Feb 9^th, 2004, 4:28pm

If it's the indomethacin that's doing the work, I'd get a 2nd opinion on the CH diagnosis...

It has to be prednisone.... A very popular and effective treatment..

Brad

Title: Re: Question!
Post by helpless23 on Feb 9^th, 2004, 5:22pm

Thanks for ALL of the information guys!

Gosh, Ken is SO excited that they are gone, starting his new job and everything.

I'm so confused over all of this. I just read the link that you listed dan. Scary to say the least...predisone.

It sucks.

What is a CPH? I'm not familiar with that term.

Toni

Title: Re: Question!
Post by Giovanni on Feb 9^th, 2004, 7:40pm

Indomethacin is almost 100 effective with CHP headaches; not cluster. CHP headaches are short, very painful and numerous; icepicks.

John

Title: Re: Question!
Post by Giovanni on Feb 9^th, 2004, 7:53pm

Correction:
Chronic Paroxysmal Hemicrania (CPH)

Title: Re: Question!
Post by Prense on Feb 9^th, 2004, 8:06pm

on 02/09/04 at 14:28:55, eyes_afire wrote:

My advice... plan ahead. Be prepared to give another preventative a try. It is very likely that his CH will return when the prednisone is tapered down.

And probably with a vengence...

Outstanding post Steve.

Best of luck Toni and Ken!

Chris

Title: Re: Question!
Post by Paigelle on Feb 9^th, 2004, 10:12pm

Prednisone totally ended a cycle for me once. However this cycle, prednisone only broke the cycle until I tapered out. Wasn't happy about that at all.