ANA Discussion Forum
Archive => Archives => Topic started by: Kilroy1976 on February 02, 2006, 03:05:59 pm
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Hi everybody. My doctors put me on a course of steroids (Decadron) to control swelling after radiosurgery, and I wanted to share my experience. I didn't know what I was getting into when I started taking this drug, and if nothing else I want to make sure that nobody else on this board is taken off-guard like I was.
I'm about halfway through my dose, and from my experience, I can say with all seriousness that the ONLY reason that I would take this drug again would be preservation of life. The side-effects have been agonizing, and they run the scale from headache to nausea to depression to insomnia/nightmares and well beyond. Now I'm stuck because the real evil in Decadron is that, once you've started on it, you basically have to stick with it until you can be tapered off.
Do not take this medication lightly. Do your research on the side effects and learn that the few that I described are just the tip of the iceberg. Be sure to ask your doctor if there are any other available treatments. Ask yourself very carefully if you wouldn't rather hit the swelling with a prescription hammer instead.
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wow, you must have been very sensitive to it.
I have been on decadron 3 of my 7 surgeries. Mostly to control nausea.
Mostly I got heartburn and increased energy from it.
But it is a steroid and has similar effects. I find prednisone much harder on my system. It is amazing I think how people can have such varied reactions to things.
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It certainly isn't agreeing with me Wanderer. I didn't have nausea before I started taking it, but now I'm in constant danger of losing any meal I eat (and even some I didn't). I have acid building up in my throat and have lost almost all sense of taste and most of my smell. I wish they had given me prednisone...
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Kilroy,
Acid build up can be managed by Losec. This drug has virtually saved my wife's life. her acid build up was so bad, she couldn't eat anything, became very thin and then Losec kicked in and it's great. She has no side affects from this drug. have a chat to your doctor about it.
Larry
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Yeah I used pepcid complete for acid and it worked very well for me. You might want to give that a try.
All of my nausea was caused by moriphine. Once I stopped letting them use that on me, I had no nausea whatsoever.
Some people love that stuff, to me it does absolutely nothing except make me sick and unresponsive in high enough doses.
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Thanks for the tips. I might try some Tums or something for the acid. Unfortunately, the stomach problems are really the least of my concerns...
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Kilroy:
My intention is not to frighten, but to alert...Mom was initally placed on 8mg/daily of Decadron, then bumped up to 16mg/daily. She got psychotic. (Even saw the room flip upside down!) The same weekend she was admitted to the local hospital her GK doctor said he admitted a young woman to the state's mental hospital. Decadron is the mother of all steroids. Yes, it is a miracle drug..but as you know, well, I don't have to tell you. As for the nausea (Mom has lost about 45 pounds in the past four months), a second neurologist that we went out for a "test drive" as it were, prescribed Zofran. Very expensive, about $50/pill, usually it's for chemo patients. Mom's dry heaves were gone within 30 minutes. Another great anti-nausea drug is Phenegren. Compazine never helped Mom at all. If your nausea isn't that severe to warrant these bazookas, Pepcid AC is terrific. Wishing you a better day tomorrow than today.
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Maybe it was the Decadron that caused my hallucinations in the early days after surgery....I was blaming the morphine?! The morphine made me nauseous and I couldnt' keep anything down. Then they switched me to oxycontin and I still couldn't keep anything down. Pain meds and I don't do well together.
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Also, a note for any men with prostate problems. My husband was put on Decadron before and after surgery for a brain tumor (meningioma). It just about shut down his urinary system.
Sheryl
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Vincent, I was also put on 16mg/day after a first-day dose of 10 mg. I've since been tapered down to 12mg/day, and today I "get" to only take 8mg. I don't even know if that's necessarily a good thing as my reactions seemed to get worse when I went down to 12mg, but at least I'm one step closer to being off of it.
I'm very sorry to hear about your mom, but thank goodness they found something to help her. I'm clearly not in the same boat that she was, but I can say that I understand how this drug could cause problems such as those you described. I wouldn't consider myself psychotic, but I've been hit with a wide array of emotional problems (depression/paranoia/general apathy towards life/etc.), and I do hallucinate. Yesterday I had to make my fiancee convince me that the furniture wasn't melting/falling.
Thank you all for your suggestions about the OTC heartburn/acid remedies. I took some yesterday and it really did help to not have the stomach problems on top of all of the other stuff. :)
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Kilroy: Mom is 8 months post-op and last month she'd awake even from a nap and her TV and phone would be upside down. Her neurologist looked at her as if she was crazy. As I told him, I'd like to see how he reacts with a steady steam of radiation aimed at his brain matter. (He's also the idiot who thought Mom was having a stroke and she waited 5 days for an MRI.) Mom would even dream that she was upside down. The past three weeks everything seems to be rightside up. But the dizziness is debilitating; 10 on a scale of 1-10. She's trying the Anti-Vert again. Still can't sit up on her own. As for the taper off, the hospital's neurology department supervised that-not her GK doctor. (Such bull&^%!) When she went psychotic she was on her way down...took her close to two weeks for the taper. Then it stays in your system for almost a month after. We have another friend of the family who had GK for a cancerous brain tumor. He's lucky if you can call it that-he's been on Decadron for a year, but then...he heard the word cancer. (No nasty Decadron side effects for him.) Finally, Mom's always been a big fan of pasta and that actually helps with the nausea that is when she forces herself to eat. Hell of diet-she's lost 45 pounds since September. So mangia some pasta fagioli, Kilroy.
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Chicken parmesian with angel hair and penne last night. :) Although it all tastes like grub worms to me.
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I'll echo the sentiment that I will refuse to take decadron at the dose I was perscribed (16mg a day) unless I am in-patient. I could not sleep at all without more drugs. Ambien was able to give a a few hours a night, fortunately. My bowel function completely shut down. After a week of no bowel movements, Milk of Magnesia allowed me to have one movement of diarrhea daily. I took 16mg/day for two weeks then quit cold turkey (on doctors advice we cancelled the taper). A week after quitting I had a "normal" bowel movement that felt like giving birth. I was very depressed and irritable and my fiance was in tears, despite knowing that my mood was a drug side effect. About five days after stopping I was back to normal.
Decadron was prescribed as the first recourse to treat my sudden hearing loss as sometimes an auto-immune response will cause inflammation of the auditory nerve. Subsequently, an MRI showed a 1.4cm AN. Now I see here that Decadron is a common post-op treatment for AN radiosurgery. Argh!
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Hi all,
Had to chime in since I'm in taper now of decacrud, as I lovingly call it. (now just over 1 week post-CK treatments)
Warned my docs pre-CK that I am sensitive to meds.. and with Papa Pearl being a pharmacist, I also consulted with him since he knows my sensitivities over my past *coff* 45 yrs of life.
Day of CK, they had me start on 4mg/am, 4mg, pm..... I understand the need for it as well as the Keppra (anti-seizure) they put me on. Keppra gave me a severe reaction, so, they immediately removed me off the Keppra and decided to linger the decadcrud taper instead. Am now down to 2mg/am only for another week, then every other day for a week then done. Been supplimenting at night with Ibruprofen.
They were also made aware of an extreme GI issue I have, so they also prescriped 150mg Zantac to take with the Decacrud. I feel that the Zantac has helped but also attest to the bowel issue. Primary care physician now has me on nightly heated prune juice/honey combo before bed to help the "cause".
I agree about the energy level and try to remind myself that it's only temporary to help the situation. Still having GI issues in light of the Zantac and Tums and such, but as for the ultimate need of the drug, I'm just biting the bullet since it's temp.
BTW, I have also broken out in hives the past week... dad and oncol nurse cannot confirm it's the decacrud or just my sensitivities reminding me that my body hates all form of Rx meds.
Phyl
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Phyl,
Hives - yuk. hope they are not cyber catchy!!!!!!!!!!
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not cyber-kootie catchy, so you're safe hun... but, now living on Benedryl/antihistimine and creams to help the hives. Been breaking out bad the past 1-1/2 weeks since I'm on the decacrud so hoping that it will alliviate post-Rx. Will be off (officially) on April 27, so another 10 days to go... UGH!
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Better not tell CB about the hives. sh sh sh sh
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Delightful chemical, isn't it? If it doesn't make you crazy it gives you the hives. Or makes you break out. Or makes you gain 20 pounds in a day. And the countdown, I remember that. "Ok, if I can just make it 10 more days...9...8...I STILL HAVE ANOTHER WHOLE WEEK OF THIS &#$*?!?!?!?!? I really feel for you. :~(
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Kilroy ONLY 20???? I wish i only gained 20 while on that drug...more like 80! LOL
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It would sure be nice if we were informed about some of these possible reactions or side effects before they just automatically threw them at us!!!!
I, too had bad reactions, and refuse to take them ever again!!!
My situation is a little diferent, and there were probably other factors that contributed to my "steroid psychosis". About 2 months post GK, after checking with my GK Dr., and having an MRI to make sure everything looked "ok", we flew from Colorado to Hawaii for Spring Break.
He assured me everything would be ok (with flying/pressure, etc..). I was on Decadron, and a decongestant (for cold symptoms). Long story short, a couple of days after we got there, the pressure in my head had gotten so bad, that I first went to a walk-in clinic twice. They prescribed more steroids (prednizone), and also 800mg Ibuprophen 3X/ day, another decongestant, & an antibiotic! I was very leary to take all of this, but "DR knows best", and I knew I just needed to get better before flying home!! Anyway, I ended up in the hospital, and by the time they could release me so I could attempt to make the trip home I was pretty much in a full-blown psychotic state (or so my husband says!! He's still telling me stories of what I did or said, that I have NO memory of what-so-ever!!!) Two days after getting home I ended up back in the hospital here! The ER Dr. got ahold of my GK DR, who said "give her more Decadron"!!!!! Luckily the Dr.s here knew that would NOT be a good idea!!!
So, I'm not sure if all of my symptoms had to do with just Decadron, or a combination of everything else I was taking, my cold, and flying, or what----all I know is I'm with you Kilroy, I will never take another one of those pills!!! QUESTION : I know you're supposed to taper off
the drug, but I was convinced if I took one more pill, that would be the one to take me over the edge---so I just quit cold turkey! Does anyone know why you're supposed to taper off ??
I value your knowledge right now more than a DR's!! Also has anyone else been told NOT to fly, or had any effects from flying???
I'm now 3 months post GK, and having more & worse symptoms than ever before (Dizziness/Vertigo mainly--can't drive or return to work, depression, etc...!) I'm on 5 mg Valium(2.5 mg in am & 2.5mg in pm), and wear the scopolimine (sp?) behind my ear. Nothing works!!
I am seeing 3 NEW Dr.'s this week, so hopefully some answers!!! Any insight would be greatly appreciated!!!!
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Gayle,
Thanks so much for sharing that with us and I'm sorry your vaca was so interrupted by that! I am suppose to fly from Boston to the UK (then onto France) in June (2 mos post CK treatment) and you got me thinking... will call my docs at BI and such for follow up on their thoughts based on my individual situation (tumor size, meds sensitivities, etc).
I had thought about it pre-treatment but you have reconfirmed my thoughts on this... I appreciate it.
Phyl
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Decadron causes your body to stop producing a chemical called cortisol. By tapering down the dose, you allow your body to gradually resume production. If you stop taking it abruptly, before your body is ready to produce cortisol, a potentially life-threatening adrenal crisis can develop.
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These drugs are similar to anti depressants. which balance your (something - not exactly sure, might be endorphins, when you go off them cold turkey, the brain can't handle the unbalanced chemical levels. You have to drop down very slowly.
Larry
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heard the same.. can bring on seizures and such from my understanding. Although the crap is driving me crazy now, I just keep telling myself "10 more days, 9 more days, etc"... temp, temp, temp.. only thing helping me get through the restless night's sleep or lack thereof altogether.
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I have been reading all the posts here about the steroid prescriptions... I am confused, its seems to vary by doctor, I had CK in Oct 2005 in Arizona (Barrows) and I live in Las Vegas; my doc said flying was ok and they didnt prescribe any steroids for me, not even as a "just in case" thing. I then went on vacation with my family in Nov., and told the doctor I was going to be travelling, he said he didn't anticipate any problems with flying (went to Maui). I get a few headaches here and there especially when I am overtired; just had my MRI which the doctor didn't indicate that there was any swelling. But I worry because it seems swelling can occur at anytime.
Wishing you all a speedy recovery from these side effects!
Sue
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I think I got pretty lucky.  I took this medicine for I think a week while I was in the hospital.  I didn't have no serious reactions to it except, had been very thirsty all the time.  My doctor had me took another medicine for the stomach while taking this medication.  I hope I got the right medicine......  =)
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You know what I find absolutely amazing? We're ALL from different corners of the US...the WORLD...and it's quite universal how ALL these doctors don't provide full disclosure (on the side effects from Decadron for starters). I guess that's the pharmacist's job when we all pay and sign for the Decadron. Nice little loophole there. I'm a broken record but Decadron should be given a "black box" warning like Ritalin. I'm still on the rant. Thanks for listening.
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Kilroy, I am really sorry to hear about your reaction to the decadrone. My mom just started taking the drug, but she had the microsurgical procedure, so she is already tapering down her steroid intake, but she's already having pretty bad reactions to it after just one day of use: nausea (she can't sit up without feeling like she's about to vomit), she can't walk around by herself anymore, etc. I really hope those are all temporary, and I really wish you the best of luck in your recovery. Hope those nightmares and hallucinations go away! :-*
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Kilroy, I am really sorry to hear about your reaction to the decadrone. My mom just started taking the drug, but she had the microsurgical procedure, so she is already tapering down her steroid intake, but she's already having pretty bad reactions to it after just one day of use: nausea (she can't sit up without feeling like she's about to vomit), she can't walk around by herself anymore, etc. I really hope those are all temporary, and I really wish you the best of luck in your recovery. Hope those nightmares and hallucinations go away!  :-*
I've been off the junk for some time now and I'm basically back to normal, but thank you for your concern. You need to be careful if your mom is feeling nauseous. If she gets sick and can't keep the Decadron down, she may need to be hospitalized so that she can get a drip of it.
Funny you should mention the pharmacists Vincent. I was discussing them with the girl last night, complaining that if you ask them about side effects, they'll just read the paperwork that comes with the prescription. Well, gee, thanks, I know how to read, but it's so reassuring that the pharmacist is there to save me the trouble. On the other hand, I would say that the primary responsibility should fall on the doctor.
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Hi Vincent and Kiljoy! ;)
PapaPearl been a pharmacist (ok, I refer to him as the local drug pusher!) for over 40 years.. have spoken to him about some of the affects of some of the meds that are prescribed to us with AN's. Interesting that there are not many drug choices for us (Decacrud, Keppra for anti-seizure, etc). I think the drug companies don't want to bother with trying to come up with new possibilities for us..... but, even though my local pharmacist that fills my Rx (nope, not dad), I always double check at time Rx is written by the doc and follow up with the pharmacist to make sure they are agreeing with any and all potential affects. I've also been known to do internet searches on these meds as well.... guess I'm bored.
Hang in there all.... 9 mores days of the decacrud and I can't wait! w00t! :)
Phyl
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But you see Phyl, if you look up the possible side-effects of aspirin, you'll find the following:
· an allergic reaction (difficulty breathing; closing of your throat; swelling of your lips, tongue, or face; or hives);
· black, bloody, or tarry stools;
· nausea, vomiting, or abdominal pain;
· uncontrolled fever;
· blood in your urine or vomit;
· decreased hearing or ringing in the ears;
· seizures; or
· dizziness, confusion, or hallucinations.
· heartburn or indigestion,
· faint ringing in the ears,
· drowsiness, or
· headache.
• Side effects other than those listed here may also occur.
Most of these are also side-effects of Decadron, but they are HARDLY comparable drugs. A doctor or pharmacist should be able to tell you whether a drug is more like aspirin or more like Decadron. Reading the list simply doesn't cut it.
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The only side-effects I had from the decadron was increased appetite--I was at Seton Hall, the guesthouse run by the House Ear clinic where you can stay for a few weeks after they release you from St. Vincents. All the ANers eat in the dining hall together every night--which is really nice. I tried to eat my weight in mashed potatoes every night. The docs sure didn't keep me on the stuff for very long post-op--maybe 10 days.
Capt Deb 8)
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Boy, you lucked out then Cap'n. Happy to hear it! ;) I was also happy when that gent posted that, after he lost his hearing following radiosurgery, Decadron partially restored it. It's good to know that it's not completely evil.
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Decacrapola, is like most other "serious" drugs in that if you have nothing wrong wih you, no allergic reactions to anything, not pregnant, then i think the drugs are usually fine. Its interesting, a lot of these types of drugs have side effects the same as what they are treating. I take neurontin for my headaches and one of its side effects is headaches - get a life drug companies!
Decadron is used for cancer, ms and heavy stuff like that so how the drug can hone in on an individual problem is beyond me. Its one of those real unfortunate things I guess.
Laz
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thanks Kilroy... oh, I agree... maybe my upbringing around PapaPearl or whatever but for me (and only me), I take all notation of "side affects" very carefully, but maybe as an eternal optimist, I try to keep the positive benefits over the negative in mind and in the case of decacrap, I know it's only temp. So, for this Rx and my use, I personally can deal with the adverse reactions knowing I'm off the crap next week.
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You know as with any drug the side affects are complied by testers who had listed that as a problem...I wonder if one person said they had stomach upset if it makes the list or if 100 out of a 100 complained it makes the list? Hmm..food for thought.
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I used Decadron after my surgery while I was in the hospital for a week. Did have trouble sleeping. Expected that. I felt pretty good until it finally left my system. Then I felt terrible. The Decadron actually makes you feel alot better because it keeps the swelling down, ect. It is a powerful medicine, though. I seemed to have more problems with Prednisone.
While I was in the hospital I saw things sideways or upside down, but that was not from the Decadron, that was from my balance nerve being removed. Because of the shape of your cortex, what you see enters your brain upside down and your brain puts it right side up by using different cues from your body. Your balance being one of those cues. For quite awhile the world looked like I was seeing the recording from a shaky video camera. Took a few months to get over that. I am doing great now. Back in college.