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Title: Prednisone -- HELP Post by DJH on Jan 26th, 2006, 1:23pm Can anyone let me know how long it took for/if this had any effect? Thanks!! |
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Title: Re: Prednisone -- HELP Post by mczoom on Jan 26th, 2006, 4:01pm My husband tired it for 3 weeks starting with 60mf for three days and then gradually lowering the dozage untill the end of 3 weeks. According the doc specialist the duration depends on the lenght of the cluster. If you stop too early the cluster comes back. as soon as he starts taking it the CH goes away in the matter of 30 min. Hope this helps. |
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Title: Re: Prednisone -- HELP Post by Bob P on Jan 26th, 2006, 4:10pm Medrol dose packs stop my attacks immediately. Regular pred takes 3 to 4 days to work for me. |
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Title: Re: Prednisone -- HELP Post by jon019 on Jan 26th, 2006, 4:44pm Hello, Same for me as Bob P. IV of solu-medrol and one week dose pack- cycle BUSTED. Regards Jon |
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Title: Re: Prednisone -- HELP Post by Fox on Jan 26th, 2006, 6:26pm Prednisone works as a preventive for me immediately (80 mg), but then gets tricky. Last cycle 80 mg prednisone stopped CH right away, and tapering down to 10 mg over 10 days kept CH at bay, with just a few shadowy breakthroughs. This cycle 80 mg pred did the trick again, but when I tapered down to 60 mg CH came back with a vengeance (stronger than before). Doc bumped me back up to 80 mg to restart the course (again tapering down). I've had some mild to medium shadows and 1 CH busted through at 30 mg pred. Past two days were slight shadows only. Another day at 10 mg pred and then it's over - hopefully the cycle is too. |
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Title: Re: Prednisone -- HELP Post by thebbz on Jan 26th, 2006, 7:10pm At 60 to 80 mg starting dose it does take a few days to (ramp up) on the stuff. O2,O2,O2. Many side effects with the pred. I know, if it works.. however after so many tapers through the years, now my hips,knees, are not reacting well. Light em up and good luck. Oh ya,,you may grow breasts as well. jb |
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Title: Re: Prednisone -- HELP Post by chewy on Jan 26th, 2006, 7:45pm Dont count on it having any lasting effects if your not taking a preventative along with it. Are you? |
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Title: Re: Prednisone -- HELP Post by Kris_in_SJ on Jan 26th, 2006, 8:22pm Chewy's right. There are some people who are able to break a cycle with Prednisone alone, but most of us also take prevents like Verapamil ... Then, just about the time you're weaning off the Pred, the preventative is kicking in. Ahhh - the magic cocktail! Anyway, like Bob said for the Medrol pack. Kris |
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Title: Re: Prednisone -- HELP Post by upnover on Jan 26th, 2006, 9:14pm Last year I did a pred taper sorry I can't remeber the mg but I was on it for about 30 days it broke the cycle and life was good. This year I tried a shorter and less mg taper and it broke te cycle but about 1 week after i was done with the taper the beast was back. I would have to say they did work pretty quckly say a couple days but the side effects worry me. the best thing I have found that works for me is o2, best thing since BEER |
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Title: Re: Prednisone -- HELP Post by Guiseppi on Jan 26th, 2006, 9:19pm The longest I was on prednisone was 6 weeks. It stops my headaches as soon as I start taking it. I use 30 mg a day. The side effects suck. I was lucky and found out lithium at 900-1200 mg is almost as effective with almost no side effects. Hope you find something that helps you out. Long term prednisone can be sucky. Guiseppi |
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Title: Re: Prednisone -- HELP Post by MJ on Jan 27th, 2006, 12:12am Prednisone does indeed suck due to the side effects. The lower doses never worked for me but when I had it increased to around 160 to 180 mg with a dose pak it would give me a nice break after a couple days untill the taper was allmost done then it CH allways came back with a vengeance. Its been a long time since I used prednisone but my mate seems to remember. Makes a person a little ugly and moody as well. MJ |
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Title: Re: Prednisone -- HELP Post by Fox on Jan 28th, 2006, 12:15pm Are the bad side effects mentioned from long term use of prednisone? I've read the stuff is bad for the bones and rough on kidneys, cuases breast development and 'chipmunk cheeks'. Also addiction is a problem. What else? I've only take pred twice in short courses (10 days and 20 days), and noticed big increase in appetite and not able to sleep until 2 AM or later. Mood swing was 100% positive. I felt like I could easily get hooked on pred. Since the pred effectively blocks CH for me starting the first day, I want to know more about it's dark side. GP also prescribed Topamax (1 month course). Now there's a drug with some really hard side effects. I stopped that after 8 days. I've since seen a neuro who agreed with pred, but advised Topamax was not right for my cycles. Fortunately (fingers crossed) the pred has finally overcome the beast so far, and this cycle may be over (fingers crossed, knock on wood, etc.). Peace and comfort. Cheers, Fox |
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Title: Re: Prednisone -- HELP Post by sandie99 on Jan 28th, 2006, 2:37pm When I was taking prednisone, it worked for me quickly and gave me 3 PF weeks. Then the beast returned. Sanna |
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Title: Re: Prednisone -- HELP Post by chewy on Jan 28th, 2006, 6:42pm Quote:
The dark side is primarily from long term use. With a taper you might get increased appetite, water retention, etc. All of the short term side effects will dissipate when you taper down and discontinue. I repeat though, a predisone taper will probably not break your cyle if you are not on a preventative. The pain returns beginning at the lower dosages. |
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Title: Re: Prednisone -- HELP Post by brewcrew on Jan 28th, 2006, 9:52pm The docs I've found that know what they're doing only prescribe it along with a preventative. It seems as though the preventatives that work (for me it's verapamil and lithium) take a week to 10 days before they start preventing. The prednisone is generally for that first 10 days while you're building up theraputic levels of the verapamil and lithium in your bloodstream. I haven't taken prednisone for over two years, but when I did, I generally took 60mg for 3-5 days then tapered off by 10mg per day at the same time I started the verapamil and lithium combo. The prednisone had a drastic effect after the first dose. |
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Title: Re: Prednisone -- HELP Post by Dave_Emond on Jan 29th, 2006, 5:26pm on 01/26/06 at 13:23:37, DJH wrote:
Smart move coming here first before getting involved with Prednisone! Thought I knew all about Pred before, but have now learned one needs to protect themselves from doctors who don't understand this medication. It sounds like those who have responded have done their studying and are using it properly. Of course everyone would know that I'm going to talk about the side effects and the dangers involved. Like others, I had no problem with the Medrol pack, a safe route to start with (although for myself ... no relief when used for CH). When you start going into higher dosages, this is where you need to be extremely careful, not all doctors will be. Mine had no clue! I'll try to keep this as short and to the point as possible. The most important things to keep in mind with Pred are the dosages, how they affect you, length of use, tapering and follow up. Quickly: Normal side effects to be expected at somewhat higher dosages are mood changes and weight gain. When I was up to 120mg, I could not stop eating ... anything! Foods I didn't even normally like. (watch your fingers between plates of food and keep 'em coming or I'd eat the plate!) Pred Belly and Man Tits are not jokes, they happen and can take a very long time to be rid of. Serious side effects: Prednisone taken at high dosages over time and without a proper taper can be life threatening. Remember it is a steroid, it will shut down your normal Immune System and take over. With proper tapering your Immune System will take back over on its own. BUT ... if one is put on high dosages for too long and not tapered properly, the Immune System will not come back on its own. For safety reasons, if you take a lot of Pred, you should have an ACTH test or Cortisol test to make sure you "jump start your Immune System again. My doctor did not do this, and I was ignorant to these facts. My taper was 13 days and no follow up tests were done. This was not good, in fact, during a siezure, they lost me in an ambulance. Had it not been for a paramedic intercepting the ambulance and reviving me, I would be here today to warn others. Still the follow up tests were not done! Now fat as can be, Man Tits, Pred Belly and feet so large I could embarass Bozo, I tried to get myself back in shape. Big mistake! I hit the weights, stationary bike and quit smoking. The stress from quiting smoking was the worst ... stress causes your adrenaline glands to kick in ... part of the immune system ... but it wasn't working, and when one area doesn't work, it spreads quickly looking for help. All this does is start shutting down the many other areas of the immune system ... and very quickly! This is very serious. The "working out" caused problems as well. My right side oblique muscles separated from anything to hold them, pain all the time and I have to wear a brace to at least hold them up for less pain. In my case, I wasn't prescribed the Pred for Clusters this time, it was for a yet unknown disorder, now almost certain to be ALS. But, the specialists I've been seeing can't even begin to try to help me with the ALS (although if they're right ... it is fatal and no cure.) So now I'm stuck with what will take me out first? Physical pain from each is neverending, then add Chronic CH on top of that and what a life to try to live everyday! This is my story with Pred, don't let it be yours! I'm still falling apart quickly, from my exterior muscles degenerating to now my interior (you don't want to know what that's like). I've accepted this now, a long road to do so, but I fight everyday to keep my faith up and battle on. Do I mean to scare anyone with this post ? I certainly hope so! But ... Pred does not have to cause these problems. Get every bit of information you can (as you are smartly doing) before you put your trust in any doctor. Quiz them about their knowledge and check it against everything you learn here and your own research. Personally, if anyone were to ask me about Pred, even in smaller dosages, I would have to say in my opinion, it's nothing more than what I refer to as a "mask" put over pain. The pain you will know is still there, but is being covered up enough that makes one accept its use as a "temporary" solution, but it does not cure! Please be careful, very careful. God Bless, Dave (Yeah BobP ... I just can't keep 'em short can I?) ::) |
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Title: Re: Prednisone -- HELP Post by brewcrew on Jan 29th, 2006, 8:35pm on 01/29/06 at 17:26:08, Dave_Emond wrote:
We call those either "moobs" or "manmeries." ;;D |
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Title: Re: Prednisone -- HELP Post by Bob P on Jan 30th, 2006, 1:10pm Quote:
But we love you anyway Dave. ;) |
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Title: Re: Prednisone -- HELP Post by Dave_Emond on Jan 30th, 2006, 5:08pm on 01/30/06 at 13:10:37, Bob P wrote:
LOL !!! Bob ... but ... uh ... hmmm ... have to warn you ahead of time ... I've been added to the OUCH Grants Committee. Don't have to tell you what's coming! Yep ... one darn long post again from Dave (or ... Tolstoy!). But, seeing what Matt and Kathy are thinking, it'll be much along with their thoughts and we'll push the BoD for answers and help! But seriously, I think we can get some big things done for OUCH, if you can handle my longwinded posts ;) Being this is DJH's thread, I'll shutup and hope we get back to the topic at hand :-X Dave (Hmmm ... the "Manzier" or the "Bro"?) |
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