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Title: what does prednisone do? Post by clavers on Feb 26th, 2003, 11:20am When I start a good stiff round of prednisone, around 40mg to 50mg a day, my CH stops. The minute that I discontinue the prednisone they begin again. My question is, what does prednisone do that other drugs do not? Is there anything that duplicates the action of prednisone that does not end up killing you? |
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Title: Re: what does prednisone do? Post by ave on Feb 27th, 2003, 4:00pm I don't know what pred does, but there is no other drug that does the same and has no side-effects, if that is what you are asking. There are other medications of course. There's Verapamil, there's imitrex, there's oxygen, there's lithium. Check out the site, use the search facility. |
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Title: Re: what does prednisone do? Post by Bob P on Feb 27th, 2003, 4:37pm Prednisone stops clusters dead in their tracks and makes you fat. Seriously - it's a serious anti-inflamatory. I'm not sure if that is the property that stops the atacks or not. I kinda figured Ueli would have jumped on this one. Maybe you stumped him too. |
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Title: Re: what does prednisone do? Post by BOBBIO on Feb 27th, 2003, 4:52pm AS SAID ABOVE, PRED IS A CORTICOSTEROID, ANTI INFLAMMATORY, STOPS THE VASCULAR SPASMS IN LAYMAN'S TERMS THAT AGGRAVATE THE NERVE ENDINGS THAT SURROUND THEM. SERIOUS LONG-TERM SIDE EFFECTS, BUT I USE IT AT THE ONSET OF A CLUSTER, OR FOR A LIMITED AMOUNT OD TIME IN THE MIDDLE OF A CLUSTER, JUST TO BE ABLE TO SLEEP FOR A FEW NIGHTS. GREAT FOR SHORT TERM!! |
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Title: Re: what does prednisone do? Post by K. on Feb 27th, 2003, 7:43pm Prednisone at 60 mg stops my cluster attacks but you can only use it for short term. The side affects are horrible. If you can use O2 and get on a good dose of Verapamil and use the triptans as needed to get relief, I'm almost wondering if it would be better to just hang on for the ride for a few days...until the Verapamil kicks in...rather then suffer with the attacks and the side affects of the prednisone once your off the prednisone?? Does that make sense? Anyway...I have been thinking about that for next cycle...if this cycle ever ends. I don't get much of a break in between anymore. Karen |
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Title: Re: what does prednisone do? Post by firebrix on Feb 28th, 2003, 1:48am This is an interesting thread. Mopar's neuro told him that Verapamil on its own would not stop his headaches, and that he would have to take prednisone to "turn them off" so that Verapamil could keep them in the "off" position. Mopar has been chronic for 3 years. Sadly, Verapamil did not stop them, and made him very sick so he was unable to continue taking it. He finds O2 does help though if he gets to it fast enough. Doesn't work on every ha. but quite a lot. Have we been misled guys? firebrix |
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Title: Re: what does prednisone do? Post by BOBBIO on Feb 28th, 2003, 8:08am I'm up to 80mg of pred., for 5 days, stopped attacks, feel like I can throw my car. In the past, pred. only masks the attacks, and I have to wait and see if they are still there when I reduce the pred. dose. Seems like a crapshoot, but I was having 12-14 attacks/day and had to abort them. Ins. co. thinks I only need 6 Statdose per 30 days. Guess none of them have clusters. I'm sure it has nothing to do with the expense, or Ins. co. profits. Should have bought Glaxo stock 7 yrs. ago when these bastards started. Who'da thunk? |
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Title: Re: what does prednisone do? Post by Bob P on Feb 28th, 2003, 9:28am The regular routine is to start both pred and verap at the same time. The pred usually stops the attacks almost immediately and keeps them away while the verap has a chance to build to useful levels. The thinking is that by the time you taper off the pred, the verap is up to strength. Remeber, with verap, high levels are usually needed (up to 1080mg/day). Also remember that the surveys at the OUCH site show that verap is only effective in stopping clusters in 30% of the cases. Added: Well I hadn't looked at the surveys in a while but it appears verap is working in about 40% of the cases. Also note - most of the respondants are using lower doses (120-480mg/day) which may account for the lower level of success. I'll have to do some correlation of the data looking at dose vs success. |
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Title: Re: what does prednisone do? Post by jmorgan52 on Feb 28th, 2003, 4:39pm As for what prednisone does: It calms the headaches down for about 5 days and then just seems to stop working no matter what the dosage is. Give it a break for a week or so and then you can usually get another 5 days break with another course. In my experience it has never broken the cycle yet for me, and it even seems to extend the length of cycle by at least a week for every course of Prednisone. I have had over 6 years experience with Pred and I don't think I will bother using it in future. It makes you feel dopey and shit. It just gives you a short break from the pain and then lets you down badly. I have tried all sort of dosages, ramp up-ramp down, daily high doses, split doses daily, you name it. They all had the same effect. Short lived relief only at the expense of being a bit spaced out (and not even in a pleasant way!) Also known on this board as the "Prednisone holiday" John |
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Title: Re: what does prednisone do? Post by K. on Feb 28th, 2003, 5:01pm Quote:
DITTO, do you ever wonder why "holiday"? It's never a holiday for ME. Karen |
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Title: Re: what does prednisone do? Post by jmorgan52 on Mar 1st, 2003, 7:09am well let's put it another way:- Just imagine this type of holiday: It's like going on a 5 day break, when you have a shit load of work still piled up on you desk which you cannot put out of your mind, and your boss and subordinates and clients keep calling you on your cellphone or in your hotel room every five minutes to deal with high stress urgent problems so you never actually get a chance to really relax and unwind. and your wife and family are nagging you the whole time because you are not paying them any attention. Not much of a holiday really is it!? :-[ or yet another way of putting it is: Prednisone fuckin sucks!!!! |
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Title: Re: what does prednisone do? Post by Peppermint on Mar 4th, 2003, 10:03pm Obviously not everything works the same for everyone. That's been said time and time again. I'm a little worried though. My friend Angel has been on 2 Prednisone breaks between October and now... just finished the last of a One-month break on prednisone this past weekend. He went two months in between so that means that the last time he was on it for approx. 1-1.5 months. He's just finished buildling the Topamax dosage so he can get off the Pred. Verap & Lithium just aren't working anymore. :( From everything I've read here, the Prednisone is obviously bad, and long term just seriously unhealthy due to its side effects. Since there has been so much relief with the prednisone, a month pain free, its obviously tempting to continue to go back to it. How many times can he do this again if the Topamax doesn't work out? Not even the pharmacist wanted to let him continue on it and suggested he go back to his doc and talk over some other route. For now, the Topamax seems to be working the way it should.....only time will tell. I would think going back to Prednisone would be too dangerous. He says he'd rather suffer kidney failure than to go back to his numerous hard-hitting attacks. He's been at his rope's end more times than not in the recent past. I obviously cannot stop someone from doing what they want to do, but its good to be prepared for what the results might be. Blood tests results...... none yet. Any feedback ??? |
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Title: Re: what does prednisone do? Post by JDH on Mar 4th, 2003, 10:36pm on 02/27/03 at 16:37:04, Bob P wrote:
lmao...I think that's the bottom line. |
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Title: Re: what does prednisone do? Post by Frank on Mar 4th, 2003, 10:56pm I started prenisolone yesterday... already feeling the side effects. For me it's like feeling major arthritis pain in every joint in my body... my back, ankles, wrists, elbows, knees, everywhere that moves. But that is much more tolerable than a CH attack. At least I can take megadoses of Advil to kill that pain. This is my third predisolone trip. The last two got rid of the CH's within days... can't wait to see what happens this time. |
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Title: Re: what does prednisone do? Post by ch_nic on Mar 5th, 2003, 10:34am Hi Frank. I too am taking Prednisone right now. I followed the schedule my ex-doc gave me when I was in school (which it worked at that time): 40mg x 5 days 30mg x 5 days 20mg x 4 days 15mg x 3 days 10mg x 2 days 5mg x 2 days for a total of 3 weeks. Right now my CHs are sometimes weaker and lasts shorter. Not to mention it dropped its frequency from 4 times in 2 days (when it first started) to once every 2 days or longer. I'm on my 30mg/day now and it's already been 2 weeks since my CH started. From my experience my CHs doesn't last more than 3 weeks. So hopefully I'll be good. However I don't have that much side effects from the pills. I know I get tired easily after taking the pills, but nothing really bit that bothers me. So I guess I'm a little lucky here. I bought a heating/cooling gel pad that you can put it in microwave for heat, or freezer for coldness. The coldness didn't work for me. But the heat did and it worked pretty good. Just apply heat to your CH side and you fall asleep easily with relief. Hang in there Frank. |
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Title: Re: what does prednisone do? Post by clavers on Mar 5th, 2003, 1:17pm This is to Frank, I'm sorry you are having bad effects with prednisone, when I take it I feel 20 years younger, nothing hurts, I feel great, except that I gain 20 lbs. But, even there, food becomes a joyous and delicious feast. I wish that I could take it all the time with no ill effects, then life would be good, but, alas, we know the down side. |
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Title: Re: what does prednisone do? Post by frozn on Mar 8th, 2003, 4:10am I am in agreement with the others about the steroidal anti-inflamitory properies of prednisone, but there is a potent non steroid anti-inflamatory med called Toridol. it was given to me a couple of years ago along with a short prednisone burst, that seemed to get me "over the hump" and able to get back to some normalcy (with the looming thought of when my next cluster might start). for almost twenty years I had to go through two or three prednisone and antibiotic bursts for my misdiagnosed "sinus problems" before I was diagnosed with CH in 98. My personal opinion is that as individuals we are half of our own cure, and that we each have similar but different afflictions from CH's. With that in mind, I think we need to each find what best works for us individually. There are alot of new drugs coming on the market and hopefully some promising relief for us all. Keep your head up, and remember that you are half of your own cure. Randy ;) |
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Title: Re: what does prednisone do? Post by eggie on Mar 10th, 2003, 9:12pm :o :o :oprednisone will kill you . bad shit keep away from it. yes it dose work but i will tell you again it could kill you and it dose make you very fat. bad bad bad suff. it could be the cure for cluster headaches. i all most died from it :o bad shit bad shit badshit badshit |
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Title: Re: what does prednisone do? Post by goldy on Mar 11th, 2003, 1:45pm Hi everyone , haven't been on the site for a while have been having a very bad time, all on the OUCH site have given me brilliant support , only found them through here which was godsend to me. thanks so much. Can you tell me what are the terrible dangers of pred I have only just come off them after being on 40mg for 18 months !! had a call from my GP after an ECG which I asked for as I am on a high dose of verp and now I have to go and see a heart specialist tomorrow . EGGIE was concerned when you said they nearly killed you.!? BTW did feel pretty good with loads of energy at first , then to be honest they just didn't do a lot apart from make me look like the incredible hulk. take care everyone Goldy |
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Title: Re: what does prednisone do? Post by Major_Headcase on Mar 12th, 2003, 2:02am I'm still tapering off from my first dose of Prednisone [a week at 60, then a few days at 50 on down, etc, on down, I'm at 20/day now and have been CH PF for week*- also see the Prednisone & Verapamil thread] What can I say ... Ick, Patooey, Yeech, GDMFSOB, nasty ... but it worked! One of those cases where the cure is almost worse than the disease; the side effects that bother me the most, in order of most stressing, are: 1) insomnia (much better lately w/<30mg day, really awful at the start) 2) "irritable/cranky/out of sorts" ... a polite way to say I'm borderline psycho wacko at times ... I'm usually a pretty laid back kinda guy, this stuff winds my spring so tight it's about to POP! ... a condition likely worsened by lack of sleep ... duh! It was the worst right at first, got better in the middle, and lately has gotten pretty funky again. >:( 3) A crappy doped out feeling (not the good kind) most of the time, visual perceptions altered 'slighltly', a perpetual state of feeling like you're almost over a hangover but not quite 4) indigestion - not super bad, just enough to take the joy out of eating 5) hungry ... a LOT ... problematic with #4, lol 6) no real weight gain, I think my hyper-nervousness is burning it off as fast I put it in, but I'm small/thin/fast metabolism person by nature, ie the luck of the genetic draw, so that's a wash ... so far! On the plus side ... 1) Prednisone stopped my CH cycle, and 2) it's cheap through my copay. I am REALLY looking forward to getting off Prednisone! Glad it did it's job, I needed an increased dose of Verapamil (went from 480 to 720mg/day) to compliment the Pred and keep the CH down. For me, it's a necessary evil, I'll take it to break the cycle but have to admit it is not a 'user-friendly' drug for my body. I wish you luck in your Prednisone treatment. -John |
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