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Topic: The miracle drug (Read 1291 times) |
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chiaspet
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The miracle drug
« on: Mar 24th, 2006, 4:15pm » |
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I have suffered for twenty years, being misdiagnosed as well as mistreated. For me, I finally found the miracle drug. I started getting shadows about two weeks ago, knowing the beast was right around the corner, I went to see my doc to load up on drugs. I already had my oxygen tank delivered to the house and was preparing to give him my "list" of must need drugs to get me through the next 2-3 months. My first question to him was "have you ever treated someone with CH's" Of course I did not believe him when he said yes, but after 30 minutes of me picking his brain and discussing drugs, he convinced me to try Prednisone. The whole while he was telling me that I would not need my Imitrex, pain pills OR my oxygen. Not believing that a mere steriod could fix my problem, I told him to write me the scripts for the pain pills and the Imitrex, JUST IN CASE.
WELL....I have been on the Prednisone for 3 days and have not the faintest shadows. It brings me to tears of joy to think that FINALLY there may be something that is not as dangerous to my body that works. My treatment is for 1 month. I am still alittle apprehensive that this will keep the CH's at bay, but for now I am loving life.
I would love to hear from anyone who has tried Prednisone and see what it did for them.
Renee 
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Melissa
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Predisone only rendered me PF for 2 days. That's it. It is a quick fix, one that is given while waiting for a preventative medication to kick in.
It is definately something to not stay on long term as the side effects are horrendous.
I will say though, that over the years I have seen a few people (not many, but a few), end a cycle with pred.
Also, what are the other "drugs" you mentioned? I notice you mentioned Imitrex and O2 and something about pain pills? What kind were you prescribed and was there any discussion about preventative medication?
 mel
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vietvet2tours
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Re: The miracle drug
« Reply #2 on: Mar 24th, 2006, 4:25pm » |
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on Mar 24th, 2006, 4:15pm, chiaspet wrote:
I would love to hear from anyone who has tried Prednisone and see what it did for them.
Renee |
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It made my dog crazy so I guess I wouldn't be using it. Potter
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Kill em all let God sort em out
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unsolved1
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Prednisone is great to use every now and then. If you take it for too long or take too high of doses, you'll see some significant side effects. Steriods are NOT good for your body or your immune system. Get all the facts if you take this drug. Side effects on all steriods can be "horrendous" !!
UNsolved
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thenucman
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Re: The miracle drug
« Reply #4 on: Mar 24th, 2006, 5:15pm » |
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Renee,
Prednisone tapers are prescribed for many, many things - including cluster headaches. When I was diagnosed with an auto-immune disease called Alopecia (I lost all my hair), it was one of my choices. I turned it down due to the long term side effects. Besides, being bald is cool 
I have used prednisone effectively several times in the past to end cycles. Now that I am chronic, they don't work that way. I rebound from pred within a week or two and I usually pay a heavy headache price for the indulgence.
I, too, felt prednisone was a miracle drug when I first used it for my Clusters. I am happy for you that you are getting relief. Just remember that what works for you this cycle, may not work next time.
Dave
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thenucman
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Re: The miracle drug
« Reply #5 on: Mar 24th, 2006, 5:18pm » |
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I forgot to mention ... when I go on Pred tapers ... I have to start shaving again .... there is a price to pay for everything, it seems. 
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Melissa
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Renee, please post here what you wrote to me in a PM, so others can read it and understand.
Thanks!
mel
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Guiseppi
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Re: The miracle drug
« Reply #7 on: Mar 24th, 2006, 6:09pm » |
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I use prednisone for the first week or two of a cycle while I wait for my lithium levels to build up. It provides 100% relief after being on it for one day.
I agree with the others it's really only a short term drug as long term usage can mess with your body in many ways. We're all hoping for the miracle pill, 100% relief with no side effects!! Hoping you find relief soon.
Guiseppi
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carriefu
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Re: The miracle drug
« Reply #8 on: Mar 24th, 2006, 6:32pm » |
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Ree-Pred worked for my 3rd cycle....enjoy!!!
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rapunzel
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Re: The miracle drug
« Reply #9 on: Mar 24th, 2006, 9:48pm » |
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Prednisone taper worked for my cycle ten years ago, however this time around when they gave it to me-it didnt work. I was convinced it would, and it worked for one night I believe then the clusters were back full force.
I hope it really lasts for you, Good luck.
Kim
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chiaspet
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Re: The miracle drug
« Reply #10 on: Mar 24th, 2006, 10:02pm » |
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Can you guys be more specific on the side effects. My doc has me on it for 4 weeks. They are 10 mg pills and i take them as follows:
2 tabs 2x's 1 week
3 tabs daily for 1 week
2 tabs daily for 1 week
1 tab daily for 1 week
I found the IM I sent to Mel...she says to post for all you to see...here it is.
Hey Mel, just read your response to predisone. No my doc did not recommend a preventative. My usual mode was oxygen, Imitrex and if need be pain pills. So far I feel GREAT. I get a little tingly in the face and have a nice flushed appearence. It is so frustrating finding the RIGHT drugs. I am just so happy that I do not have a CH right now.
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Melissa
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Thank you Renee. I wanted you to post it not only for you, but for any new person coming to the boards.
Your doc rx'd the pred. for you without rx'ing any preventative med. I am just very worried that the pred. might wear off and you won't have anything else to take as a back up. Usually when predisone is rx'd, it is done very short term, to give a preventative med time to kick in.
You may want to ask your doctor about this.
Also, here is a link with loads of information on medications http://www.ouch-us.org/medications/medications.htm
hugs,
mel
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chiaspet
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Re: The miracle drug
« Reply #12 on: Mar 24th, 2006, 10:24pm » |
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I go to see my doc next week so he can see how I am doing on the Pred. I have some Imitrex nasal sprays for back-up.
I plan to print out all the VERY helpful info you all have posted for me to bring to my appointment!!!
THANK YOU ALL. Life with CH's would be rough without you guys!!!!
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kcopelin
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good grief
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Re: The miracle drug
« Reply #13 on: Mar 24th, 2006, 11:01pm » |
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Renee,
It's called a pred holiday by some-that hopefully pain-free week or so that it takes for the preventative to kick in-but ya gotta have a preventative. Also, I can't stress enough that the side effects are real. I have done probably 10-12 tapers in the past 5 years. I now have osteopenia (pre-osteporosis) thanks to pred. Don't get me wrong, I really needed the break it gave me. But now, I have to take lots of calcium and my doc wants me to take fosamax. I'm really too young to have to worry about breaking a hip. Just be careful, k?
kathy
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chewy
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Hate to burst your bubble but without a preventative it is very likely the attacks will return at the lower doses of the pred.
I've ended numerous cycles using pred but never without a prevent.
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| « Last Edit: Mar 24th, 2006, 11:03pm by chewy » |
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Richr8
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Re: The miracle drug
« Reply #15 on: Mar 25th, 2006, 12:15am » |
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on Mar 24th, 2006, 4:24pm, Melissa wrote:| It is a quick fix, one that is given while waiting for a preventative medication to kick in. |
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It works for me until the Verapamil kicks in. I'll stay on Verapamil for months afterward, but the Pred will knock it down initially.
pf wishes,
rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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_Lee_
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Re: The miracle drug
« Reply #16 on: Mar 25th, 2006, 1:19am » |
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on Mar 24th, 2006, 11:02pm, chewy wrote:Hate to burst your bubble but without a preventative it is very likely the attacks will return at the lower doses of the pred.
I've ended numerous cycles using pred but never without a prevent. |
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Remember two words, Verapamil & Lithobid, has worked for many.
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| « Last Edit: Mar 25th, 2006, 1:26am by _Lee_ » |
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zwibbs/Scott
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Re: The miracle drug
« Reply #17 on: Mar 25th, 2006, 2:37am » |
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Lee is right---Verapamil and Pred worked for me, but it took 10 solid days before I experienced PF times.....Also Prednisone can rip your stomach apart---ask the doctor for a script on PROTONIX...Expensive, but will protect your stomach
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PL259
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Re: The miracle drug
« Reply #18 on: Mar 25th, 2006, 6:49pm » |
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Pred bursts work great as a short term intervention. You need a good preventive. I stay on verapamil year round due to wild uncontrolled cycles. Works for me. I avoid prednisone for to long or to often. Good luck. Get them to try some of the preventivies!
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mynm156
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Re: The miracle drug
« Reply #19 on: Mar 26th, 2006, 12:02am » |
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Yeah, I am glad that your are living large right now but the side effects of long term exposure to corticosteroids is very very bad. It might help break a cycle or help ease one but you need to find a better cobination of abortive meds. GOOD VIBES!!!
MYNM156
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chiaspet
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Re: The miracle drug
« Reply #20 on: Mar 26th, 2006, 8:37pm » |
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Please help to clarify something with me!!! All of you talk about a preventitive. I was under the assumtion that the pred would end my cycle all together. I have had clusters for 20 years with skipping a year for the last 4. My cycles last anywhere from 3 weeks to 3 months. I told my doc this and he said it would end my cycle. I had a doc (not my current doc) suggest beta-blockers to take year round, but I dont know how I feel about taking something for the rest of my life when it is only (I say that very lightly) 3 months that I have to deal with this. I really need some advice from all of you who are episodic like me. I am confused when everyone talks about preventitive. Is that short term or daily?
THANKS!!!!!!!!!!!!!!!
Renee
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mynm156
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Re: The miracle drug
« Reply #22 on: Mar 27th, 2006, 12:52am » |
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When Ihaad cycles I never had anything end my scycle they just kinda went away. Now being chronicmy preventative meds just seem to help keep mine from running amuck. I still get hit 3-4 days a weeks and several times on those days.
Hope you get your break soon
MYNM156
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sandie99
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Re: The miracle drug
« Reply #23 on: Mar 27th, 2006, 2:20am » |
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Prednisone, I remember that one. I've taken it twice. The last time I took it was back in fall 2004 for 4 weeks together with verpamil. Pred made me over evergetic, bit manic and I slept only 5 hours. It didn't do that much for the pain, but I sure was one HAPPY person... And when I say "happy", I mean someone who's living in an illution. Pred did that to me on the first time I took it, too.
Best wishes,
Sanna
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"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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seccsij
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Re: The miracle drug
« Reply #24 on: Mar 27th, 2006, 3:34pm » |
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I had a well-meaning Dr give me pred once and it did less than nothing for my CH bu he made me stay on it for 4 weeks to give it a chance!!!!!!!I have since found out that I have become allergic to it. Last time I took it, my face and lips swelled up and I spent 2 days in hospital on O2. If it works for you, good luck. Now, besides the incredulous looks from medical staff when I describe CH, they sneer when I tell them I have a pred allergy!!!! Apparently it is so rare they don't believe it is possible. That's me, thru & thru, ----RARE!!!!!!------
LOLLOLLOLLOLLOL)
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