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Title: Prednisone Post by fubar on May 25th, 2003, 12:36am I am on day 3 of my first Prednisone taper. The schedule for taking this is agressive, 10 days going from 60mg/day down to 5 (60,60,60,60,50,40,30,15,10,5,0). I have to say, I'm amazed. I only had one painful shadow (hardly a real attack) today, and last night I slept a whole night. Oh my GOD I'm feeling the light at the end of the tunnel feeling, but I know it's likely they will come back as soon as I stop taper off. In any case, the sanity index is on the uptick. If you haven't tried it and you can't get a break, this may be the trick. Seems to work for me so far. -Fu |
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Title: Re: Prednisone Post by brain_cramps on May 25th, 2003, 3:09am glad you're getting some relief Fu. you sure need it. good luck, grant 8) |
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Title: Re: Prednisone Post by cbolony on May 25th, 2003, 5:16am fubar glad to hear you are getting a break from the beast i hope it last forever :) :) |
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Title: Re: Prednisone Post by Donna on May 25th, 2003, 6:23am furbar...so glad you found something that helps. That's the good news we all love to hear. Hopefully you have found what works for you. My son has also found relief with Pred. Although it is a nasty drug, sometimes it is the only relief one can find. Your dosage and duration looks about the same as his, and his cycle does end with that one treatment, thank God. He does not take it until he is into his cycle. He has 3 faulty heart valves and the doc is strict with what he takes. He wasn't on any med until I found this site. He was once prescribed Inderal, but that didn't do anything. Good Luck!!! |
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Title: Re: Prednisone Post by Roxy on May 25th, 2003, 7:11am fu.....glad you are catching a break and that the sanity index is up. A full nights sleep always makes the world a little more tolerable. Hope this knocks it out for a long time, Tracey |
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Title: Re: Prednisone Post by don on May 25th, 2003, 7:45am I always use a pred. taper while in cycle. Sometimes 2 or 3 per cycle. Get ll the rest you can and sleep sleep sleep. Are you on a preventative? PLot a stategy now, the cycle tends to start up again at the low end of the taper. |
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Title: Re: Prednisone Post by jonny on May 25th, 2003, 7:51am Watch the hip joints Bro, that shit ate away at my hips to the point I couldnt walk. Becareful ...........................................jonny |
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Title: Re: Prednisone Post by Bob_Johnson on May 25th, 2003, 7:58am Let me echo Don--hope you have a plan with you doc for the next preventive med to use when this run of pred is complete. Given your hard struggle, I'd highly recommend that you buy: "MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")." This is the best single book covering the complexity of treatment which I 've found. |
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Title: Re: Prednisone Post by oringkid on May 25th, 2003, 12:56pm I'm sooo glad the pred is working for you! Sherry |
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Title: Re: Prednisone Post by paul_b on May 25th, 2003, 2:17pm Glad you are getting a breather. Hope the turn around stays around. |
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Title: Re: Prednisone Post by ZAIRA on May 25th, 2003, 2:36pm :) ... Hey Fu, I am happy to hear that Pred works for you, and... I hope the beast will leave you definitely... All the best for you, Zaira 8) :-* |
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Title: Re: Prednisone Post by AlienSpaceBabe on May 25th, 2003, 3:18pm Glad the pred is working for you! and Don's right... the headaches do come back as you taper down. side effects differ between people: Jonny's hip problems sound horrible! I actually lost weight on the first 14 days of my taper... then gained it all back the last 7 days... Some have mood swings... crave rare meat... others have few problems. Good luck! Lizzie aka ASB |
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Title: Re: Prednisone Post by don on May 25th, 2003, 4:16pm I crave live meat. Well I guess thats with or without the pred. anyway. |
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Title: Re: Prednisone Post by Mark C on May 25th, 2003, 4:56pm |
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Title: Re: Prednisone Post by brain_cramps on May 25th, 2003, 5:40pm on 05/25/03 at 16:16:01, don wrote:
Funny Don, I usually prefer to kill my deer, moose, elk, bunny-rabbits ;) and gophers :P before I eat them. just me, grant 8) P.S. forgot geese, ducks, and even ducklings ;) |
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Title: Re: Prednisone Post by Miklos on May 25th, 2003, 7:30pm Fu, please see my -editorial- in the Blissful Sleep topic. |
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Title: Re: Prednisone Post by Mikey on May 25th, 2003, 8:16pm FU, Glad to see ya gettin some relief dude! Hope that the beast never comes back!!!!!!!!! PFDAN to ya Mikey, ;D |
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Title: Re: Prednisone Post by catlind on May 26th, 2003, 7:32pm on 05/25/03 at 17:40:28, brain_cramps wrote:
Kiss a bunny between the ears? Did I really just say that? :o Cat |
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Title: Re: Prednisone Post by OneEyeBlind on May 26th, 2003, 8:35pm Glad to hear you are getting some relief FU !!!!!!!!! |
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Title: Re: Prednisone Post by kim on May 26th, 2003, 8:43pm Good luck with the prednisone taper. I have read lots of success stories regarding a REPRIEVE............... Just make sure you follow the docs instructions and don't suddenly stop taking it. I did that and ended up literally not able to use my arms and legs. Scary. Plus my face blew up like a friggin ballon and I was very testy. :D |
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Title: Re: Prednisone Post by DaveHar on May 26th, 2003, 10:15pm Quote:
Quote:
A Leesa likes to say.....Here comes Peter Cottin Tail hopping down the bunny trail. LMMFAO FU...I am very glad to hear that your getting PFDANs. Good luck and keep your head high. |
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Title: Re: Prednisone Post by JDH on May 26th, 2003, 10:23pm Fu, glad to hear your getting relief with the Pred. Enjoy your pf time but like the others have said, be careful. pfdan's Jim |
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Title: Re: Prednisone Post by Callico_Kid on May 26th, 2003, 10:31pm Great news! ;D It's always good to hear someone is getting relief!!! jc |
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Title: Re: Prednisone Post by stuey on May 27th, 2003, 9:34am Thankful it's helping you. ANything that does it is good. It worked for me three years ago but not this go round I even went up to 90 from 60 and tapered. Don't know why. I just hope it's over for you and you go into remission. |
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Title: Re: Prednisone Post by SommelierCH on May 28th, 2003, 5:34am Fu, Way cool, whatever works, you know. Just a small PF break during my cycles, away from that constant Kip 1-3 shadow (doesn’t happen often), made even the sky a marvelous thing. And, you got a whole nights sleep, what’s the value of that, on the Master Card scale of priceless? You sound like a different person, you have your love of life back, and it sounds like you have hope. I still can’t say that you’re sane, because I just read on another post that ……..jonny is now our benchmark for sanity. Personally, I have no frigging idea if that makes it easier or harder for me to be considered sane. Fight the good fight, bro, David J. P.S. Send me your dang address, so I can send your OUCH Healing Doll!!!! P.P.S. jonny—just wondering about the bad hip thing you all are talking about; is there a vitamin/mineral supplement regime that could help to curb that, like calcium, iron or osso buco? |
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Title: Progress report Post by fubar on May 28th, 2003, 9:29am OK... So I'm on day 6 of a 10 day Prednosone taper. I've gone from having 2-3 Kip8-10's a day to mere shadows every now and then (maybe a nice stabbing pain for 1 minute, but nothing serious). I'm not sure about the side effects of the Prednisone yet, but my joints and back feel 'looser', and not in a great way. I had some abnormal hip pain, and my knees have been hurting a little bit. All in all, I deem this to be a fair trade for the moment. This is the first real break I've had in (going on) 19 months. I'll be off the Prednisone by Sunday, and in all probability, right back in my cycle. Somebody explain HOW this is working and WHY they can't make it work PERMENENTLY. For a chronic, a break in the action can be a real life saver, but it can also be a reminder of what 'normal' days were like. A depressing reminder of how bad things have gotten. I see my neuro again on Friday and will ask him the same questions. |
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Title: Re: Prednisone Post by Major_Headcase on May 28th, 2003, 11:45am fubar, I got good results with Prednisone, ie more than a short time out, by stretching out the tapering period quite a bit ... well, a lot. I stayed at each level for about 4 days, and upped my Verapamil to 720mg/day at the same time. I had to beg like a hungry wet dog to get my GP doc to extend my Prednisone script to allow for the extended tapering off time, but my doc's a good guy who's willing to work with me [I show him a fistful of printouts from this site everytime I visit him, bless his heart he's not afraid/ashamed to admit when he's not "all-knowing" about a medical condition]. He did this in part because my CH came back when I got down to 40mg/day. I will say that Pred made me "pretty grouchy" (translated: short-fused and hyper-irritable) and an insomniac. Even so, the tradeoff was worth it. Good luck with your Pred treatment ... are you taking Verapamil (or other prophylactic med) too, if so, at what dosage? -John |
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Title: Re: Prednisone Post by fubar on May 28th, 2003, 12:20pm Well, I'm on the Verapamil, 720/day and supposed to be on Depakote 750 ER, but I decided I don't like the Depakote. My doctor will work woith me. I just want to know WHY it works. When I can't take it anymore, I'm going to be pretty bummed. -Fu |
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Title: Re: Prednisone Post by Woobie on May 28th, 2003, 1:03pm all i know is that prednisone is a steriod, and is used for severe inflammation. it worked for me with my arthritis, and for asthma attacks. i dont know why it would work for clusters, unless inflammation has something to do with it. Ueli should know... where's Ueli? there are some people with arthritis that take a low dose of it every day for years and years.. (which i cant see how that can be good for ya.... but they do it) fu.. i'm glad you're getting some relief!! Hope you get the answers to your questions. tina :-* |
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Title: Re: Prednisone Post by jonny on May 28th, 2003, 3:01pm on 05/28/03 at 05:34:06, SommelierCH wrote:
Dont know David, I was on it ten years ago. As soon as the pain was so bad in my hips that I could not walk I got off it. .........................jonny |
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Title: Re: Prednisone Post by TomM on May 28th, 2003, 3:12pm on 05/28/03 at 13:03:50, Woobie wrote:
TomM |
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