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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> less prednisone
        
(Message started by: tex_leger on Jun 7^th, 2005, 3:20pm)

Title: less prednisone
Post by tex_leger on Jun 7^th, 2005, 3:20pm

I just thought I would pass on my latest. My Dr. had me on 50mg of prednisone for 7 days then 40mg, 30mg,20mg,10mg all for 7 days. He now has me on 50mg for 5 days then 20mg for 5 days it's working real well. Hope this helps somebody.
Take care Tex

Title: Re: less prednisone
Post by Lizzie2 on Jun 7^th, 2005, 10:35pm

How long did you take a break from the prednisone between these two tapers? Just curious... My neuro used to have a policy of waiting at least 6 weeks before starting a new one because of all the side effects.

I can't take pred anymore - but, I do hope it helps you!

L2 :)

Title: Re: less prednisone
Post by burnt-toast on Jun 9^th, 2005, 3:51am

Glad to hear someone is getting relief.

Prednisone has helped a lot of sufferers but it has serious side effects, particularly with long term use. Some neurologists will only prescribe it as a last resort treatment.

I recently went through a series of injections and tabs to get about 36 hours Pain Free before they were back agin. The frustrating part was the I had to complete the tapering off process even when it wasn't working. Turned me into an eating machine for a couple weeksl

Best wishes for your long-term relief.

Tom

Title: Re: less prednisone
Post by Gator on Jun 9^th, 2005, 2:59pm

My 2nd neuro would only prescribe pred about every six months and was hesitant about that.

Pred is some nasty stuff to be taken very often.

Title: Re: less prednisone
Post by Redd715 on Jun 9^th, 2005, 4:28pm

Dang, I had two rounds of pred with only a one week break between them last year.... :-/

I don't want to think I need to worry about anything...

Where are some of research gurus when we need them?

Title: Re: less prednisone
Post by tex_leger on Jun 13^th, 2005, 3:16pm

Hi Lizzie2, I was pain free for about 2 months when we tried the new dose.I am now under a bit of stress so I am only lasting about 3 weeks, still I think 10 days is better then 35days. I'm sure once I get everthing together I'll be able to go months without pain.
Take care and lots of luck :) :)

Title: Re: less prednisone
Post by Lizzie2 on Jun 14^th, 2005, 12:27am

Sorry about all the stress. :-/

What do you mean by only able to go 3 weeks, etc? I got a little lost. Were you talking about pain free time, time between prednisone tapers, or...?

Basically, the corticosteroids (of which prednisone is a type of) are one of the very few drug categories that have effects on every single system in the body. You name it, it affects it. Now...you might not feel those effects, but that's part of the key with these drugs - and unfortunately the game we play.

Most people do note some intense side effects when taking steroid "burst" tapers. You're going from a moderately to very high dose down to nothing, but decreasing slowly over, hopefully, a reasonable period of time for that dose, etc.

For someone who only has to take steroids once in awhile and it ends their cycle or helps them to cope with the cycle until their preventative med kicks in, etc....lots of people think it's worth it. I know I would.

In my case, I thought it was worth it...despite being chronic with 2 headache types at the time....to continue taking steroids every 6 wks or so, even though the benefits were pretty minimal. Sometimes you'll do whatever it takes...I think everyone here has had that feeling! 2 days of time off from clusters was worth the side effects I was experiencing.

But....I had some bad biochemistry, apparently. ;) Although not every person who takes steroids develops a bone disease called Avascular Necrosis, it is a risk. They don't know how steroids are connected to AVN, but it does seem to play a factor for some people. A few people on this site have it. Two of my orthopedics (yeah...I have 3 different ones...and I'm 24), feel that I probably was 'predisposed' towards AVN, but that taking steroids accelerated it to the point where I had to have surgery now instead of 20-30 years from now.

That's just one case. I don't want to scare anybody, but I would want everyone who takes steroids to think deeply about it, just like any other med we may be prescribed or choose to take. Learn about it. Consider the risks and benefits. For a lot of people, the benefits are HUGE. For some, the risks outweigh the benefits. That has to be determined between you and your doctor.

IMHO, the best weapon we have is to be informed. When DJ created this site, he created the ability for a whole lot of people to gain information they may have never had, otherwise. Pretty incredible. :)

So...hang in there! If you're taking a lot of prednisone and not getting a whole lot of relief, I would at least talk to your doc about the drug, its side effects, and generally how they handle prescribing it. Seems like several people have doctors who follow various time lines for how often they will prescribe it, or under what circumstances, so it may not be a bad idea just to get your doc's perspective on how they prescribe it and go from there. :)

Best wishes!
Lizzie :)

Title: Re: less prednisone
Post by cheNY on Jun 14^th, 2005, 8:36pm

I've had great success with prednisone, high dose. Usually tapering off meant return of headaches. I've been on them for a month plus, tops. Side effects suck but what can you do. Yes long term use are dangerous, but again if its the only thing that works..... so be it. Asthmatics, COPD patients, arthritic patients, among others spend yrs on prednisone. What I recommend is building immune system, eat well, take extra care of yourself.
On my recent return, a week ago, I gave myself a shot of Solu-Medrol 125mg IV push......... I've slept for the last 2 nights, days are pain free, no shadows, no hint of the demon within. I'm starting to think the bout is gone. I hope. Hope it helps.

Title: Re: less prednisone
Post by Lizzie2 on Jun 14^th, 2005, 11:35pm

Hmmm...Asthmatics only take about 5mg of pred daily... Though it isn't quite as popular as it used to be!

You should read some of the stories about pred in some older posts here... Particularly check out Dave_Emond's story. That is a prime example of why tapering steroids, if you are on a high dose, is extremely important.

Hope you are checking your sugars with that solumedrol. My sugars sit very low...normally in the 70s, and can drop to 40s even at times. On the solumedrol my sugars were over 200. Wouldn't have known if the doc didn't order an accucheck...because I didn't feel that.

The adrenal stuff is really really important...

Finding something that works is great, but not if it kills you... We still got plenty of life left, despite the beast...if it's between death and battling the beast, then I choose the beast. My time here ain't up yet. :)

Take care,
Lizzie

Title: Re: less prednisone
Post by Bob_Johnson on Jun 15^th, 2005, 8:16am

I hope you are aware that at the same time you're on Pred. you should be starting Verapamil as a long term preventive.

The problem with Pred is that, while it stops a cycle quickly, the clusters often return as soon as you stop the Pred.

Title: Re: less prednisone
Post by tex_leger on Jun 15^th, 2005, 5:41pm

Hi Gang,
I'll try to clear it up. I can be confusing at times. I'm 62 yr's old and had clusters for about 15 yr's, my Dr. didn't know what was causing the headache and had tryed everything, finally 5 yr's ago he sent me to a specialist and he said they were cluster's. He then put me on the long dose of pred, last fall we talked about a shorter period and it has worked well till this spring when the stress started up, but enough of that. When the headache's start I'll usually go about 2 or 3 days taking a lot of tynol hoping that it is only headache, I'll go as high as 12 tynol per headache that is when my wife tells my eye is drouping and to start the pred. When I start the pred my headache's stop cold just like they were never there, once I go the 10 days of pred I will go about one or two month's without headache's. The only bad side effect is eating and gaining weight. The good side effect is I can work all day without getting tired. I tried Verapamil for a year and it didn't work for me. Pred for me is the magic bullet and until they find something else I'l stay with them. I do know about the weakening of bones and I hope with my massive dose of vitamins that I have been taking for 40 yr's will stop or slow down the deterioration. I'm still looking at the mushrooms so if the pred stops working or I start taking to many I'll try it. Anyway good luck and take care. Tex :) :) :) :)