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JRHD66
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Predinisone Stopped Working
« on: Jul 18th, 2005, 1:08pm » |
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Hi Everyone...
8 years in, and all of a sudden Predinisone, which has always stopped my clusters dead in their tracks, hasn't touched them. Has this ever happened to anyone else?
My neurologist, aside from shrugging her shoulders a lot (Thanks doc! want to come to my house and bang your head with me?) had now put me on celebrex and topomax. Excuse me if I'm not overflowing with confidence in her.
Any thoughts? I've tried everything else, and Predinisone was the only thing that ever worked. Not to mention I'm off season (usually a winter sufferer)and for the first time I'm being woken up in the middle of the night by HAs...
This has NOT been a fun trip on the Merry Go Round (not that a cluster is ever a trip to Mardi Gras...) 
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unsolved1
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Re: Predinisone Stopped Working
« Reply #1 on: Jul 18th, 2005, 1:14pm » |
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What dosage are you taking ? Maybe it's just not big enough.
Also, there are other steriods you may want to try. A trip to the ER for a shot of Solu MEdrol and an Rx for a Medrol DosePak might stop your HA's now.
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Margi
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Re: Predinisone Stopped Working
« Reply #2 on: Jul 18th, 2005, 1:28pm » |
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I'm confused. You've been on Pred for EIGHT years?  Or am I just misinterpreting your post. Pred is usually prescribed to a clusterhead on a short burst and taper. My hubby got it for 17 days, ramping up to 60 mgs at the middle, then tapering down by 5 mgs/day until he was off it. It's never prescribed as a long-term preventative, not by a cluster knowledgeable doc anyway. You do know that long-term steroid use isn't cool, right? If you've been on pred that long, could it be that you've actually been in remission and you're just now back into cycle? Pred is meant to break the cycle, but it does come back once the taper is done. Trick is to start a preventative (such as verapamil) before you're completely off the pred.
Have you tried oxygen? Tell us more...?
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JRHD66
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Re: Predinisone Stopped Working
« Reply #3 on: Jul 18th, 2005, 1:57pm » |
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Margi,
Oh G-d no, I haven't been on Predinisone for 8 years straight. I know better than that. I mean that for 8 years, every time I've had a cluster, a quick 60mg predinisone 14 day taper has done the trick. before that we ran the gauntlet: verapimil, beta blockers, all the usual suspects. This time round, as I said, I'm A) about 6 months off my usual schedule B) The pedinisone may as well have been pez
I am heading right for my local health store after work today to pick up a bottle of kudzu, as everyone seems to be having varied success as well....
but again, has anyone ever had predinisone stop working? and what are peoples' thoughts on celebrex and topomax?
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unsolved1
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Re: Predinisone Stopped Working
« Reply #4 on: Jul 18th, 2005, 2:16pm » |
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60 mg of Prednisone usually works for me but not always. Sometimes (in desperate times) I'll do as much as 80 or 100mg and ramp down.
Topamax caused me to get kidney stones twice. And it didn't do anything for my headaches. I'll never do it again.
Like I said earlier ... there are other steriods out there. If you really need a quick break, ask your doc about them.
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StressFree
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Re: Predinisone Stopped Working
« Reply #5 on: Jul 18th, 2005, 3:36pm » |
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Prednisone has helped me often in the past. I did have some nasty attacks break through the Prednisone though. I used Maxalt to abort this last round, and found it to be very effective. Similar drug to Imitrex, yet different. Imitrex was not good in my case. Multiple headaches daily occured with Imitrex use. I have used Stadol nasal spray for attacks at night, or when not needing to work, drive, be around people, etc. Tried to use this only everyother day or so. As many others have stated, the Verapamil seems to keep things under some control as I've tapered off the Prednisone. Sometimes they want you to use very high doses of Verapamil. I didn't care for that, and quit using it during a couple of cycles. It seems to have worked great again this time. Best of luck and prayers for you and yours, Rich
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Margi
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Re: Predinisone Stopped Working
« Reply #6 on: Jul 18th, 2005, 4:04pm » |
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be real careful introducing Kudzu if you're still on the Topomax and Celebrex. It's a relatively new cluster weapon and there has been some stuff written about meds interactions.
Isn't Celebrex an arthritis drug? Why would they give you that for cluster? Hasn't it been outlawed anyway? I'm pretty sure it has here in Canada.
Topomax is an anti-seizure med. Kudzu has been used to treat alcoholism. I have no idea of the interaction. Celebrex was pulled off the shelves in Canada because of heart-related traumas. Kudzu affects your blood pressure. I'd sure do some research before you stop/start anything new.
What about oxygen? Do you use it?
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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Kris_in_SJ
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Re: Predinisone Stopped Working
« Reply #7 on: Jul 18th, 2005, 8:40pm » |
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I'm with Margi. I've never heard of Celebrex being used for clusters. It's a pretty powerful antiinflammatory drug - great for arthritis and tendonitis (which I've taken it for), but I can't imagine how it would work for clusters. However, if you have joint pain, that will probably be cured! I'd seriously question your neuro about that particular drug.
Can't speak to Topomax since I've never taken it, but luckily the Prednisone taper still works for me - at least until the Verapamil kicks in. I still need the Trex injects for the bad ones, but at least they're fewer with the Pred.
Hopefully you have a good abortive handy. Keep us informed.
Kris
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Lizzie2
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Re: Predinisone Stopped Working
« Reply #8 on: Jul 19th, 2005, 1:08am » |
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Margi -
I think it's just Vioxx and Bextra that have been banned? If I'm not mistaken, Mobic and Celebrex are still okay.
Celebrex is often used in treating many different headache disorders, but I'm not sure of how useful it is for CH. I know lots of people who swear by it for other things! Personally, it didn't do much for my avascular necrosis - which was greatly enhanced by prednisone and other steroids!
Antiinflammatories have often been used for headache disorders - although to tell the truth, I would have to go back and do a little 'research' on how they work. Toradol is a very potent anti-inflammatory but often a first-line used in the emergency department treatment of headache disorders. While it is unlikely that Toradol in the ER is going to help someone with CH, it has its time and place - mostly in migraine, however.
I can't take steroids anymore, as most here know - because I now have Avascular Necrosis - which means the ends of my femurs (at the knees) are partly dead because the blood supply got cut off to the bone - the theory is that the fatty deposits from the steroids lodged in the small vessels and accelerated AVN, which I was probably predisposed to beforehand.
It's sad...
I do think that steroids can be quite useful, but I worry about anyone who takes them long term with any great frequency. At the AHS conference, Dr. Tepper from NECH asked me how often I did steroid tapers - I told him that at times I did a taper every 6 weeks because it bought me a couple of CH-free days. He shuddered when I said that....I shudder now whenever I hear about steroids!
I don't think they should be banned - but I sure do have a daily reminder of what damage they can do!
Stay safe all,
Carrie/Lizzie2 
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vig
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Re: Predinisone Stopped Working
« Reply #9 on: Jul 19th, 2005, 8:20am » |
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"So far, there is no hard evidence that Celebrex increases heart risk. On the contrary with Celebrex there is some evidence that it is more heart-friendly than Vioxx or Bextra. Celebrex doesn't raise blood pressure at high doses and there seems to be no increase in heart disease events from the many studies conducted."
from:
http://www.thedoctorslounge.net/cardiolounge/articles/bextra_vioxx_heart /
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