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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Prednisone
        
(Message started by: mwend on Jan 5^th, 2003, 3:30pm)

Title: Prednisone
Post by mwend on Jan 5^th, 2003, 3:30pm

Hi. Brand new here. I have had CH for 18 years. The only med. that works for me out of many tried is Prednisone. It will 100% stop the kip 9's and 10's within 24 hours and sometimes totally break the cycle. I take a steroid burst starting at 60mg. and decrease 10mg a day until done. Sometimes they will sneak back after a few weeks and a little more steroid will banish them until next cycle.

Title: Re: Prednisone
Post by domm on Jan 5^th, 2003, 7:15pm

mwend - welcome to the board. Tell us a little bit more about yourself. We're always interested in new faces and experiences.
Prednisone seems to work for many as an abortive, but most have to follow up with Verapamil or other preventative because their cycles last a bit longer than the several days worth of pred.

Glad you found what works and as others have said, grab an oar and start rowing.
domm

Title: Re: Prednisone
Post by ziggy on Jan 5^th, 2003, 8:32pm

Hi, i'm brand new also. I have had ch's for 12 years now at least 2-3 cycles a year. I been taking preds for about 4 years now but i really don't feel much relief from them. but i keep taking them cause i think to myself it might be worse without them. allthough i can't imagine anything worse. I'm glad the prednisone works for you. :) :)

Title: Re: Prednisone
Post by sueellen83 on Jan 5^th, 2003, 11:27pm

Welcome aboard everybody,

mwend,
I was on Prednisone 80mg a day for several of my cycles and didn't have much luck with it ( too many side effects at that high a dose). This last cycle I was on a medrol dose pack and it helped until the Verapamil started working. I'm glad you found something that works. :D :D

Sue Ellen

Title: Re: Prednisone
Post by mwend on Jan 6^th, 2003, 7:27am

Hi all. Thanks for responding. I am male, 52 years young, and live in Green Bay, WI. ( Home of the cheeseheads. ) I refuse to talk about their latest playoff game. LOL. I agree that Prednisone is not a real good med. to use. In my case, it seems it's that it is the only thing that will help. Given the choice, I will do the steroid burst rather than suffering the horrible pain.

Title: Re: Prednisone
Post by ziggy on Jan 6^th, 2003, 9:43am

ziggy here sorry about your cheese heads. ifeel your pain iknow the beast and i'm a browns fan ???

Title: Re: Prednisone
Post by talitha on Jan 6^th, 2003, 1:12pm

mwend, welcome to clustertopia! prednisone works for me but as soon as I taper down the beast returns. Also, the side effects are hideous- gained 15 pounds this time and I swear I'm growing a beard. Also, since I already have osteopenia, prednisone is really not a good idea-but you know what-if it got rid of the headaches i'd grow a beard and moustache and start wearing a size 28W .
anyway, glad it has helped you and welcome.
talitha

Title: Re: Prednisone
Post by JoeyT on Jan 7^th, 2003, 7:01am

Looks like we're in the same boat. I was taking 40mg/day fro several weeks. Now tapering down - hope it continues to work.

It's my understanding that the weight gain from steroids is because the drug causes your body to retain salt - which of course makes you retain water. It's my experience that most (not all) of the weight comes os after you disconntinue prednisone.

Anyone have a way to NOT get so bloated?

Title: Re: Prednisone
Post by JDH on Jan 8^th, 2003, 12:21am

mwend,
I've had recent success breaking a cycle with Pred starting at 60 mg daily. The side effects ain't that great but I'll trade a little weight gain over pain any day.

Title: Re: Prednisone
Post by NotH20 on Jan 10^th, 2003, 11:05am

Welcome Mike - glad you found us. I too like my Prednisone Holiday, but the beast returns when I get down to 10 mgs per day. But it sure is nice to be pain free for that short amount of time. Gives me a chance to be normal again. :)

Ziggy - did I read your post wrong? Have you actually been on prednisone for the last 4 years continually ???

Mia

Title: Re: Prednisone
Post by JoeyT on Jan 10^th, 2003, 1:31pm

I've been on 30 - 40 mg of prednisone for the last 2 1/2 weeks. Headaches are almost gone but I look like a balloon!!

Title: Re: Prednisone
Post by JDH on Jan 10^th, 2003, 3:54pm

Well so much for Prednisone.
Just as soon as I tapered off of it the beast started playing his nightly engagements AGAIN!
Oh well, the nine days I was on it were PF so at least I had a break from the action even if was only a little one.
Is there a waiting period before you can go back on Prednisone?
I'm also using Verapamil for the first time (I'm on my 12th day) and so far I can't tell if it's doing anything or not.

Title: Re: Prednisone
Post by RobinT on Jan 10^th, 2003, 7:35pm

Hi

I'm a newbie too. I began taking pred. on new year's eve day (40 mg. for 4 days, 30 for 4, 20 for 4, 10 for 4). I have since gone to a new neuro (long story) and she is keeping me at the 20 mg for an extra 5 days as the kip level increased as I decreased the pred. I just started Verp. and will begin 02 and acupuncture on Monday. I am praying for relief.

Title: Re: Prednisone
Post by JoeyT on Jan 10^th, 2003, 8:34pm

Robin,

It took me years to find out about O2. I was amazed when it actually worked. I don't think many doctors know how to tell their patients to use it. I went to a new neuro Wednesday who told me he hadn't had any luck with his patients using O2. Problem was he was only telling them to use 5L/Min and not using a non-rebreathing mask.

Good luck to you.

Joey

Title: Re: Prednisone
Post by Mark C on Jan 10^th, 2003, 10:02pm

Like most of you the steroids work at the beginning doses but after tapering off, the beast will return. At best the steroids will break the cycle long enough for a preventive to take effect. Unfortunatly for me I have yet to discover a preventive that work, for me. My usual battles consist of all of the triptans I can stand to hold the beast at bay until the cycle runs its natural course. I am armed with much new information from this site and am ready to do battle when the beast returns, and it always returns. I wish you all PFDAN's.....
Mark

Title: Re: Prednisone
Post by Svenn on Jan 11^th, 2003, 6:25am

I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway

Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily

This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway

Title: Re: Prednisone
Post by JoeyT on Jan 11^th, 2003, 8:51am

I have to agree Svenn. I am however, chronic so I take the verapamil all the time (120 x 4). I was taking 240SR twice /day but recently swithched to the regular release because of advice I got on this board. I guess I have the 'chronic' part figured out but every few years I get a really monster spell that breaks through the verapamil. I am on Prednisone 40mg / 30mg every other day and it is holding them back. I do the O2 thing for an attack. I can't do Imitrex anymore because of a heart attack 5 years ago (as you know).

Good luck folks

Title: Re: Prednisone
Post by Svenn on Jan 11^th, 2003, 9:02am

As you know joey i also had a heartattack over 1 year ago and want to add some things that happend after that:

My bad heartcondition is not imitrex-related but its familyrelated

Both my neuro and the first cardio was taken my shots away from me when i got the heartattack.Then i asked my primarydoc why.And he said no way.I`ll give you the shots you are needing,because you have all the right of a qualitylife Svenn .
Then a couple of weeks ago i got a huge anginapain.Was at the ER overnight.The new cardio was just marvelous .
He told me this:
Why should you choose between plaque or colera.If i`m gonna follow the book,he said,i`m gonna take the shots away from you.But i had a father he said that was a clusterhead and my heart is telling me that i can`t take your shots away,so for once in my profession i`m gonna follow my heart instead of the "book" and let you have the shots.But you promise me to be careful with the shots he said.I`ll have to tell you if he had been a girl i just had married him on the spot there.You better ask this cardio if you don`t have the right to a quality-life? That if the shots help you.Take care my friend

The strange thing happend and that was that my cluster almost vanished after the heartproblems,and i was diagnosed as cronic,but so it has been said once again

I DO NOT RECCOMEND THIS AS A TREATMENT

guess i just was lucky

Your friend Svenn

Title: Re: Prednisone
Post by JoeyT on Jan 11^th, 2003, 11:59am

I don't recommend a heart attack either...however, right after I had my heart attack my clusters that had been chronic for 20 years disappeared for 5 years...

Problem with getting my Imitrex is that docs in the US are so affraid of being sued that they follow their wallet rather than there heart. My new neuro gave me Amerge and made me sign a release stating that if I have a heart attck or DIE that I can not hold him responsible...The American judicial system and medical proffesion is really screwed up in the US. We treat our pets better than we treat human beings.

BTW, I'm leaving for Amsterdam and Copenhagen in about 5 hours. I look forward to seeing some of the beautiful clean cities in Europe.

Wish me luck as I wish everyone who has CH luck.

Joey