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        Supporter's Corner >> Supporter's Corner >> Question about Prednisone
        
(Message started by: Peppermint on Sep 8^th, 2002, 11:17pm)

Title: Question about Prednisone
Post by Peppermint on Sep 8^th, 2002, 11:17pm

Ok, hi Peppermint here again. Question re: Prednisone.
My friend, the one I've posted about last, had relief from Prednisone for a short while. He has questions on it and he is aware of this website but says he starts to get depressed when he's on it, and so I have been giving him the info he needs from here. It's great in a way b/c it opens up conversations we may have never had---- so back to the question.

He was on Pred for about three months and his chronic headaches got way better, 1's & 2's and almost completely gone. Then they came back. He's been chronic for 4 years and would like to know if anyone has ever had Prednisone and have it NOT work for them. I thought I read something similar somewhere on this site, but he's asked me to get some feedback for him specifically about this.

I can't tell you what a great blessing having this dialogue with you all here has been. I might never be able to talk to him about his CH if it wasn't for all the support here. I keep telling him that there are many angels here and I believe it gives him plenty of hope and the realization that he is not alone; Johnny's posts that I sent him had him laughing yesterday......some comment about a hole for beer in his 02 mask. He had a few 8's yesterday and was feeling down. Those posts sure cheered him up. I can't make him look at the site, I can only hope to be there for him, which I am happy to say, the people onthis website made possible.

So, any feedback on the Prednisone? ???Any info would give some insight, he's been on Verapmil, Lithium & 02 as abortive.

Gracias everyone... ;)

Title: Re: Question about Prednisone
Post by Ree on Sep 9^th, 2002, 6:35am

Hi Peppermint... Prednisone can be a help to a CH sufferer sometimes it flushes out the attacks but there are those that dont get relief from it and its not a great drug to be on anyway... Prednisone is a steroid so you always have to taper off it... If you dont you can get serious side effects... It also can make you swell up and keep excess weight on your body. I have been on it once and I have to say it didnt work for me, franly I dont think the side effects are worth the bother. Has your friend been hospitalized yet... My husband was finally hospitalized when we thought his clusters went chronic. They put him on an IV of DHE and that broke his cycle for him... good luck... ree

Title: Re: Question about Prednisone
Post by Peppermint on Sep 9^th, 2002, 9:51am

Hi Ree,

Thanks for the feedback. He hasn't been hospitalized yet but I think actually something may be wrong - I didn't hear from him yesterday, at all, which is quite unusual. I'm a little worried and will try calling him a little later. He's started last week with the 3's and went to 7's in two days and Fri, & Sat., 8's , Sat, two eights in 2 hours. I don't know but to me that sounds pretty tight and he was dazed on his meds. Sunday is a mystery yet. I am praying for him, he was supposed to see his doc tomorrow which is why he asked about the Prednisone.
That med that broke your husband's cycle, do you mean it worked for good, or for a long remission? I am gathering lots of information which my friend turns out not to have, so I guess this might also be something to know.

Ever heard of anyone breaking a chronic cycle of years? Or at least a lengthy remission after such a long chronic cycle? He sure could use it.

Thanks.

Title: Re: Question about Prednisone
Post by Ree on Sep 9^th, 2002, 11:06am

when Dave went on the DHE in the hospital he was on it for a whole week through an IV injection I think once a day for seven days... he then didnt have any ch attacks as long as he was hooked up to the IV when we got home he got hit a few more times and then the cycle ended... He is usually in remission for about 1 1/2 to 2 years... we are coming up to the 2 year mark and wicked nervous (Boston expression) I hope you hear from your friend and that he is alright.... good luck... ree

also pepper... why dont you post this in the medicine section of the Message Board some of the sufferers never come here and could tell you more than me... r

Title: Re: Question about Prednisone
Post by ChristineL on Sep 9^th, 2002, 11:16am

Check my posts on Prednisone on the Meds posts. I am currently coming off it. Yes it did lower the severity and occurances of my CH's but it did not break my cycle. I have just started Verapamil. I am also having some nasty side effects coming off of the Pred. Nothing I can't live with but annoying more than anything.

Chris L

Title: Re: Question about Prednisone
Post by daven on Sep 9^th, 2002, 11:43am

Hi Peppermint,

I am a Newbie :) to this board, but have had episodic CH for 2 years. I finally went to see a Neuro Dr. last November. She put me on Pred (60, 40, 20, 10mg - 3 days each) and an antidepressant ... Amtriptylene (effects sleep cycle ... CH's come at 5 pm instead of 2 am). This treatment aborted that cycle immediately. I started another cycle in June. This time there was immediate relief at 60mg and 40mg, but below that they came back. I went back to 40mg Pred 2 weeks ago and after 1 week I tappered off. CH's are GONE (for now, thank GOD). I don't know if the cycle ended just cause it was ready to, or if the course of Pred did it. Guess I will find out next time.
Like my Dr. said, with CH's , you try to find something that works and then you stick with it 'till it doesn't wotk anymore. There isn't any "one size fits all".

Dave

Title: Re: Question about Prednisone
Post by Peppermint on Sep 9^th, 2002, 11:00pm

Ree, ChristineL and Daven,

Hi, ladies, and thanks for all your feedback. It seems there are many different takes on this....

Before I go further, let me say that my friend, lets call him Angel, is okay as of today.. I just spoke and chatted with him for a little, he is in unusually good spirits. He was on the 7's yesterday, a three hour run, exhausted and that's why I didn't hear from him. Then today, he's another person, played in a golf tournie!, can you believe that....the things that people surprise you with. I didn't even know he played, he's always consumed by the CH.

Anyway, he says he is grateful for the informaton, and is looking forward to more. I will be checking the Med postss as well as other stuff. He said the Pred did work really well and then stopped working...he mentioned the DHE and that his neuro was actually talking to him about it. Thanks for that Ree, he read your post. He's been doing other research of his own and I suppose to hear it someplace else is encouraging.

I'll be back, hopefully with some good news.
ok, nite I'm falling asleep at my pc.....zzzzzzzz

PFDAN to you.
Love Pep

Title: Re: Question about Prednisone
Post by Peppermint on Sep 9^th, 2002, 11:02pm

DAVE!! ;D

Sorry, I didn't mean to switch your 'cables' as they say in Spanish -- I meant to say hi ladies and gents but I never finished that piece..

Pep