hi there

Im currently experiencing my worst cycle for several years. i uaually get hit every 14-16 months but am now on my 3rd cycle in 12. I use the pred taper, which is usually succesful in my case, but this time, i've been constantly hit twice a day for the last 2 1/2 weeks. always in the early hours the 1st time, and then roughly 6 hrs later the 2nd time. I'm using Imigran as my abortive, its my godsend, fights the beast of within 10 minutes thankfully. I've been wondering this time though, is the pred inefective because its my 3rd taper in a short space of time? I've religiously followed the dosage to the letter, (I'm not very good at taking tablets, I tend to forget)' Or, is the cycle so bad this time because of the hours I've been doing at work? I've done alot of extra hours recently due to it being busy at work, but I also work part time at the weekends. Alot, you might think, but I live alone and have a mortgage, bills to pay and a car to run. needs must, but am I making it worse for myself? I'm considering going back to the docs to see if there is anything else they would prescribe, or even get back to the hospital to see the neuro again. Your comments would be appreciated, especially on the work issue.
Thanks for reading, and heres hoping for pfd's & n's for not just me, but all of us

Paula      

Sadly it's not unusual for a med that has worked for many years, to just up and stop working. Prednisone has never worked as a cycle abort for me, it stops the CH as long as I take it, but as soon as I go off I get creamed. I use it as a transition med while I'm waiting for my prevent to kick in. A prevent is a med you take daily to reduce the number and intensity of your hits. I use lithium, at 1200 mg a day it blocks 60-70% of my hits. Verapamil is a popular first try prevent, Topomax also has a loyal following. Might want to discuss a prevent with your doc.

Read the oxygen info link on the left. 32 years of CH and it's still my first line abortive, cheap and no side effects.

So sorry the pred has stopped working, it can be heart breaking when a tried and true treatment fails you. Time to get reading and learn some new coping techniques. Hang in there.

Joe

Like guiseppie said, I have had meeds suddenly stop working or change how they work for me. Topomax worked for one cycle but didn't the next cycle. This cycle I am finding that I can use o2 and DHE but the migranal version is making me sick when I take it. Pred never aborted a cycle, only kept the CHs at bay while I was on it. I can never take red again due to a side effect I developed, so a few pf days l.just isn't worth it's use for me.

I tend to get rogue hits throughout the year if I am stressed in some way, but it doesn't drastically alter my cycle. I'm not sure about others here though. My average is 2-4 CHs a day depending on the cycle, so maybe your cycle is just changing.

Hi Paula  - yep I'm afraid Joe is spot on about how common it is for a CH med to stop working, just when you thought you had a consistently effective counter attack for this CH beast..

And I believe that for most of us, pred tapers only work when we're at the high dose, then watch out for some real slammers as soon as you're at a lower dose, or off.

Folks have been reporting good results with the preventative approach focused on over at clusterbusters.com and it's forum. Here's a video talk on that subject:
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Thanks for the input folks, have been on the phone to the doc this morning after my 2nd fight with the beast in 5hrs, and have an appointment in a couple of hours time, he also mentioned a referral back to the neuro, so fingers crossed...............

Fingers crossed.....do ask him about the 02! ;)

Joe

It would be helpful if you would give dosing information when you ask a question about a specific med.

Entirely possible that you will have to do another taper cycle but with a higher starting dose.

Your experience is not unusual and may be linked to a doc who is too cautious in dosing. Usual starting dose ranges from 60mg. to 100mg.

I have to vote with Mr. Johnson here.

During this last cycle my Topamax was working fine when out of the blue I started getting some nasty hits on a regular basis. A quick visit to the doctor started me on a 60 mg prednisone taper, and the nasty hits stopped the same day and never came back. Oddly enough, this was the first time I have ever taken all six 10 mg tablets at once. Maybe that helped?

Topamax managed what was left of the cycle, and I only have one more week of single 25 mg tablets to go before I am totally weaned off the meds.

I hadthe same thing happen with pred. in 2008 it stopped the cycle within 3 days, this time we tried twice with two diff doses,no luck at all.  ????

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In my case Prednisone has just slightly better than a 50% success rate.  520mg tapers over 3 weeks or 690mg tapers over 4 weeks yield very similar results.  Prednisone provides some value just over half the time and the rest of the time it has no apparent benefit.

Prednisone is utilized in treating a number of disorders/ailments but long-term use can have some severe side effects.  Exercise caution and avoid stacking tapers in rapid succession.       

Good luck with your Doctor visit.

burnt-toast
(Tom)   

The worst cycles I have ever had were years ago after pred tapers.  It just isn't worth the side effects and  second round of clusters for me, so I have never used it again.  Still, the answer to your question has many variables, so I cannot answer it for you even though it sounds so familiar.  Keep us posted...I am interested to know your outcome.  Good luck!!!

Joni

well judging by whats been said here about the pred, then yes, i must have a cautious gp. My taper starts at only 30mg for 5 days, 20mg for 5 days them 15 for 5 days followed by 10 & 5 for 7 days each. I'm now at the end of these and have been hit 4 times today! I have a neuro appointment, but not until the 25th of next month, tho the doc did say to ring him once I'd made the appointment and he would try and get it bought forward, I'm ringing 1st thing in the morning!!
Tom, I did query wether I would be ok to have another taper when i started this cycle, being that it was my 3rd cycle in 12 months, and they didnt seem to think it would be a problem. Think this time I will go armed with questions and info to the hospital and see what i come away with.

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I second the Coach's suggestion!

Ditch the meds, bust and inhale O2.

Did I miss it...or are you NOT taking a preventative medication?

I second what Joe, Bob, and Joni said. 

30 mg of Pred only made the beast mad for me.  Had to go up to 60 for any relief.  However, due to side effects I won't use it again unless my Kudzu and O2 quit working totally.

Jerry

burnt-toast wrote on Sep 23^rd, 2010 at 12:24am:

Prednisone......long-term use can have some severe side effects.  Exercise caution and avoid stacking tapers in rapid succession.

Some very important advice right there, especially since the severe side effects can be permanent.

bejeeber wrote on Sep 24^th, 2010 at 11:08pm:

burnt-toast wrote on Sep 23rd, 2010 at 12:24am: Prednisone......long-term use can have some severe side effects.  Exercise caution and avoid stacking tapers in rapid succession.        Some very important advice right there, especially since the severe side effects can be permanent.

AGREED!!!

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[smiley=thumbsup.gif] [smiley=thumbsup.gif] [smiley=thumbsup.gif]

Joni wrote on Sep 25^th, 2010 at 2:22am:

bejeeber wrote on Sep 24th, 2010 at 11:08pm: burnt-toast wrote on Sep 23rd, 2010 at 12:24am: Prednisone......long-term use can have some severe side effects.  Exercise caution and avoid stacking tapers in rapid succession.        Some very important advice right there, especially since the severe side effects can be permanent. AGREED!!!

Burnt Toast, Beejeeber, & Joni...could you elaborate or give more specific detailes on pred long-term permanent consequences of long-term use?  (I'm a little worried now).  When you say 560mg taper, where you taking that much a day?!  That seems extremely high (sorry if I misunderstood).  Hubby starts with 60mg for 5 days, 40mg 5 days, 20mg 5 days, then 20 every other day.  We were told this would knock out CH until the Verap has a chance work (tapering up with Verap).  This has been a rough cycle, entering month 5.  He was told if CH comes back in full force to do the pred taper again.  Needless to say, he's been on this  A LOT this cycle.  (For his tummy he's suppose to take a nexium too).  Anyway after noticing not many go/recommend the pred route, and reading your concerns, I'm looking for more info.  Of course the side effects suck, getting puffed up and a little moody (not bad with me though thank goodness!  Pity the guys he works with sometimes lol).  Anyway, any info anyone wants to share would be appreciated.  Thanks!  Wishing wellness to all..

There are a whole host of long term side effects from using steroids for extended periods of time. A good selection of these can be found from START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

From the Wikipedia entry - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Long-term side effects include Cushing's syndrome, truncal weight gain, osteoporosis, glaucoma and cataracts, type II diabetes mellitus and depression upon dose reduction or cessation.

I personally am happy to use prednisone for short term tapers but unless convinced by a doctor I'd be reluctant to use them long term unless it was medically necessary.

As always with anything like this talk to your medical professional before changing doses, stopping, etc.

Thanks for the info Mike.  It's one of those necessary evils for him right now.  We knew it was a nasty med, but it's about the only thing right now that gives results.  After reading that post I got a little worried.  I guess we need to figure out what's considered "long term use" as that's up to interpretation. Is 4 - 5 months a year, sometimes at 60mg, sometimes at 20mg "long term high dosage"?  He obviously suffers some of the side effects, guess we wrongly thought they were temporary...Got some more homework to do  ;)  Thanks again.  Wishing you pfd&n.

I'd speak to your doctor and your pharmacist. Both will be able to give much better information about how long is long and the relative risks / benefits.

Virtually no medicine is side effect free, although oxygen is pretty close.