Both my older brother and I are CH sufferers (uncommon family link, I know). 2 years ago, he was having a very bad cycle which the normal Prednisone taper didn't help. His doctor then gave him a 100mg dose via IV. It did break the cycle, however the long term effects were not worth it.
The doctor did not warn him that high doses of Prednisone can cause major bone problems. He now has a bone infarct in his femur (no blood flow to the bone, so the bone dies) and is having major problems with his joints.
Don't know if anybody else out there has had similar issues, but wanted to throw that out. When in a cycle with no relief, we tend to try just about anything to battle back.

MadHatter wrote on Sep 25^th, 2009 at 3:41pm:

When in a cycle with no relief, we tend to try just about anything to battle back.

Don't we though!

I stayed on a course of prednisone longer than I knew was safe once when I was on the receiving end of some hellish hits, at a point when I thought my cycle would've been over,

My extremely desperate attitude was "I don't care what permanent side effects may occur, having to be on dialysis for the rest of my life would be a joy compared to this"  (I had read something about possible kidney failure).

This was 21 years ago and the bone thing hasn't showed up on me yet , thank gosh, but I was beset by various  ailments afterwards, some of which I still haven't shaken. I had an extremely weakened immune system for a good 7 years following, and it wasn't until years later that I read about Prednisone overdo and immune system problems and realized what had happened.

This prednisone is some serious stuff, NOT to be overdone!  :o

Was his condition definitively traced back to the pred. IV as the cause?

Yes it was. He went to a specialist at OHSU who confirmed it. He (the doc) said it's incredibly rare to have it happen in a long bone like that, but have ruled out any other cause.He's considering filing a law suit since there's a very good chance he could end up crippled should he break his leg, but reluctant as he was at a point like bejeeber said, willing to take just about any risk.

That's a damned shame. Prednisone is a great transitional med for many of us.......but does have potential for serious side effects. :-[

Joe

I had a bad episode back in 1996 that my neurologist, at that time, put me on Prednisone for to try and stop the cycle.  It stopped it, but I couldn't get off of it.  Every time I tapered the least bit, they clusters came back even worse...it was the worst I've ever suffered.  It ended up taking 9 months to get off the med.  It was a nightmare with side effects and I have never felt the same since.  It is absolutely the last resort for me.  I also found a new doctor.  I was made to think it was just my own sensitivity to it, but I have found out differently since then.  Like most drugs, it is wonderful thing if you have to have it but it does carry with it many debilitating side effects that can last a lifetime.  I am so thankful I don't have to be on this drug long term.  I know 3 people that have to take it for life after brain surgery and it is very sad what it has done to them over many years....but it saved their lives, too.  Sometimes, the options just aren't very great that we have to make.  My husband has life long side effects from radical surgery, chemo, and radiation...but he is alive 14 years later when they had given him no hope.  You just have to weigh the good with the bad and it is hard to do sometimes.  Also, everyone is different.

Joni 

My doc doesn't like steroids for me because of diabetes. He gave me a small dose (with warnings) for another issue and my blood sugar tripled.

:o :o :o
wow

Joni wrote on Sep 26^th, 2009 at 4:39am:

....Every time I tapered the least bit, they clusters came back even worse...it was the worst I've ever suffered........It was a nightmare with side effects and I have never felt the same since.

Yep I'm afraid that all sounds familiar from my experience with heavy/sustained dosing.

I think the idea is to be tapering down to and past where the dose becomes ineffective once a longer term preventative has built up to theraputic levels in the system. Generally 10-14 days.

Brew wrote on Sep 26^th, 2009 at 2:33pm:

I think the idea is to be tapering down to and past where the dose becomes ineffective once a longer term preventative has built up to theraputic levels in the system. Generally 10-14 days.

Yes, you're right, but it hasn't work that way for me.  The withdrawal from it seems to over ride anything else.  If I ever HAVE to use it again, I will start with smaller doses but that may not matter.  I hope I never have to use it again.  It actually ended up being was worse than the cycle of clusters for me...at least that time.  It is sooo tempting when your head is out of control because it stops them cold.

Joni

The Beast has been relentless for one solid year now.  I used to get them for 4 to 6 months and then they would be gone for 3 to 4 years.  I went to the Cleveland Clinic where they gave me nerve blocks right at the temple but they only worked for a week which was a blessing at the time.  I have tapered down from 80mg of prednisone to 15mg but then the Beast was back so I went back to 20mg nothing then 30 nothing 40 nothing today I went back to 60mg.  I just pray that this will work don't want to go any higher but as we all know we will do what ever we can.  There were times a 68 cent bullet sounded good. :'(

Tim, that just both sux AND bloze.  >:(

Sorry to hear what a desperate predicament you're in there. The hits that come along with a prednisone taper down can be so unbelievably hellish.  :(

Just checking in case there's still something that could be tried that there are discussions and info about here : You've probably already been trying things like various other preventative meds, hi flow non-rebreather O2, 1/2 dose imitrex injections, testosterone level check, non med stuff like Kudzu, melatonin?

Somewhere a solution will pop up that will end up being so much better that the 68 cent alternative, and I sure am hoping it's just right around corner for you - please hang in there man.