Creaky Board   Traditional Meds and Side Effects   Prednisone Taper    profile | register | faq

Author	Topic:   Prednisone Taper
Coffeegirl	posted 01-11-2005 14:50 ET (US)      Hi, I have tapered off my prednisone (I've taken it for 6 months or so). I don't like the stuff because I feel like I have a black cloud over my head all the time. I stopped it two days ago. I'm feeling very tired and my all my joints are sore but that's actually nothing new lately except that I'm more tired than normal. My doc says if I have to start it up again to do it but I hate it. My fear is- is it common to experience another flare after stopping prednisone?
Jessica	posted 01-11-2005 15:21 ET (US)          I weened my self off of a year of prednisone last March. I went on it becasue my eyes flared, but when I started coming off much joints flared. Once I got back on my normal meds I did okay though. It is yucky stuff to be on.
Carolan	posted 01-11-2005 18:51 ET (US)          It's not uncommon to flare again, even after careful weaning.   Give it a few days, or a week or two. Maybe things will settle down.   Hang in there!
bkc	posted 01-12-2005 11:46 ET (US)          Coffeegirl, I felt more achey for a while when I got off the last dose of pred after taking it for a year and a half. But it did improve, since I was on a strong anti-tnf. I have a stock of pred to use for flares only, but haven't had to use it for a long time (YAY). I have 2 boxes of "fat" clothes that I am hanging on to "in case" I have to go back on it long term, which is a very depressing thought.
Nch0202	posted 01-12-2005 17:31 ET (US)          LOL...I'm glad to hear I'm not the only one who has a box of "prednisone" clothes in the basement. I got really brave and got rid of the biggest ones a few weeks ago, but it was scary!!
courts	posted 01-12-2005 18:05 ET (US)          gee whiz, prednisone discussions depress me. we had a bunch of it in lecture today... all the terrible side effects of corticosteroids. have to stay on low doses. shouldn't be on long-term. only if other things don't work. ugh. i've been on the &*$#((% drug for NINE YEARS!!!!!! i started weaning down last may and i'm almost to 4mg. just thinking about that drug gets me cranky. anyway, now that i got my rant out, all sorts of things can happen when you come off the prednisone. the tiredness and sore joints make sense. the flare makes sense. my doc even warned me last month that another patient who he has been weaning off of prednisone weaned too quickly. she was kinda doing it on her own without telling her mom or the doc and had to go into the hospital because her body wasn't making the cortisol fast enough and she went into some sort of crisis. i know a lot of people get hung up around 5mg is the weaning process, so i've been pretty anxious these days. i'm alternating between 4mg one day and 5mg the next. scary stuff. congrats on getting off!! try to take it easy and give your body time to adjust. it's such a huge stressor for our poor little bodies. good luck =)
Carolan	posted 01-12-2005 18:34 ET (US)          courts,   I used to split my 1 mg tablets into 4 quarters, and wean off a quarter of a pill at a time. It was tortuous, but it worked for me. :)
courts	posted 01-12-2005 20:19 ET (US)          i had been wondering about how much of the stuff i experienced recently was related to the prednisone taper, so i did a little internet search and found this page to be handy: http://www.nlm.nih.gov/medlineplus/ency/article/000370.htm
June	posted 02-10-2005 21:35 ET (US)          To: Coffeegirl,CarolanI recently went to my rheumatologist. I have been on prednisone for three years. I have recently discovered that I have prednisone induced ostearthritis.( Bone Density Test) I am getting off this drug. I am on only 5mg. I am going to try 1/2 half pill then 1/4 pill then off. I am going to take calcium supplements and continue changing my lifestyle and diet and exercise. Of course this doctor never said it was induced by the corticosteroid(prednisone) I'm on. I found this out for myself. DOC's are legal DRUG PUSHERS!
June	posted 02-10-2005 22:24 ET (US)          Carolan...read that u have had RA for 40 years....That's encouraging....Would like to instant Message u.....Please respond.....
Carolan	posted 02-11-2005 11:01 ET (US)          Hi June,   Prednisone is a powerful and useful drug, but the side effects aren't always worth it, IMO. I too have bone thinning, and have had to have both hips replaced because of the stuff. I probably would have had to have them replaced anyway, due to the RA, but I think the prednisone accellerated things.
courts	posted 02-13-2005 08:46 ET (US)          june, you can get 1mg tablets of the prednisone to help you taper off. it has to be a slow process. i've been alternating 5.0 and 4.5 two weeks and then just doing 4.5 for two weeks. then alternating 4.5 and 4.0 for two weeks before i can just do 4.0 for two weeks. and sometimes that feels too fast. be careful in tapering and keep in touch with a doctor who knows what you are doing. there are lots of good doctors who want to help. and despite its side effects, prednisone is a life saving drug. i probably wouldn't be alive today without it (and i'm only 23). courts
metoo	posted 04-19-2005 08:43 ET (US)          Just found this. Have sarcoidosis (lungs, bones, mouth, scalp, etc) and had BAD flare last year and went on high, then massive (for me) doses of prednisone then added methotrexate without effect, stopped methotrexate after a while, went on Plaquenil with almost miraculous effect on the painful ulcers in my mouth. Had to put up with all the side effects of prednisone which (like my sarcoid) some were usual and some were weird. Of course, being diabetic didn't help. Went from diet control to 4x a day insulin.   Have been tapering for last few months from prednisone, first at 5 mg/week but because side effects weren't getting better, then when I hit 25 mg/day made it 5 mg every 5 days. Today is the first day I will not take any prednisone and I have yet to see major effects on my side effects. I am still terribly swollen. By evening I have swelling to mid thighs, atdominal area, neck, back, face. My cheeks get so swollen I can see them! It is like having little shelves under my eyes, I can balance dimes. The ophthalmologist says my eyes show no evidence of sarcoid, diabetes, or effect of the Plaquenil but by late afternoon I can't read and have to increase the font on my computer to 150 x normal.   Anyone have anything similar? Anyone have any idea how long it will be without prednisone (still on the plaquenil) until things improve?   Wow, it feels good just to vent.
leslie	posted 05-14-2005 12:26 ET (US)          Just found this board and the topic just seemed so appropriate thought I'd join in. Diagnosed with hemolytic anemia in February and have gone from 100mg/day prednisone to 2.5. Supposed to stay here for another 3 weeks then hopefully off!!!!! I seem to be having problems at 2.5 that I didn't have at the other dosages under 10mg. Wondering if this is from the prenisone taper or if the anemia is returning. I'm extremely tired all the time. The other day my left arm went completely numb, then quite painful (went away after about 5 hours). Woke up this morning with what looks like an eye infection (good grief!) Just wondering if anyone else has experienced these problems at the very low doses. I'm expecting more flareups after I stop taking the drug entirely (??) Guess I'm just trying to determine if I need to see my hemotologist earlier than planned in the event my anemia has returned.
courts	posted 05-14-2005 13:32 ET (US)          leslie, if i were you, i'd see the doc just b/c both of those possible explanations are worth trying to treat. i've been tapering my prednisone this year too. i got from 10 down to 4 and couldn't get any further. i eventually gave up on 4 and went back up to 5. i was overexhausted, cranky, lethargic, and not getting enough work done. it's very common to have effects below the 5mg of prednisone. take care of yourself! see a doc! hope you feel better, courts
fish	posted 05-17-2005 10:29 ET (US)          Hi, I have been on prednisone and acetaminophen since 1984 for my RA - and every other anti inflammatory under the sun... I am trying desparately to get off this horrible stuff...now i have osteo in both knees and facing bilateral replacements. I agree that docs are legal pill pushers as the rheumatologist only offered me methotrexate-which made me sicker than a dog... and remicade (whats worse now - leukemia or painful swollen knees???) if that doesn't work. I have recently tried Celadrin and MSM and have finally gotten off the tylenol. Yeay! - whats a few headaches and some nausea?? I see though that getting off prednisone will be really complicated. thanks for your comments about weaning off of prednisone...
leslie	posted 05-22-2005 19:58 ET (US)          Hi Courts, Thanks for the response. I'm convinced that prednisone has turned me into some sort of a hypochondriac. My hemo doc claims he's never had a patient with so many problems on prednisone under 25 mg/day. I've come to believe that life on prednisone means feeling lethargic and grumpy not to mention very unpleasant items like hair loss and a very fat belly!! What's really interesting is that I never gained a pound on prednisone but my fat (about 30 pounds overweight) has redistributed, mostly to my stomach. I'm scheduled for a blood test (CBC,Coomb's,LDH,serum protein, etc.) later this week then a f/u with the hemo doc a few days later. Assuming no major abnormalities with the lab results I'm OFF the prednisone!!!!! Not going to think about the alternatives. My hemo doc is aware I can't go back on higher doses of prednisone.
courts	posted 05-23-2005 09:05 ET (US)          leslie, redistribution of weight on prednisone is precisely what prednisone does. so it's not that odd - just part of the deal. are you going to go from 2.5 mg to nothing? from my experience, that seems like a large jump - i've been going about .5 at a time and worry that if you try to jump from 2.5 to nothing, it might be more difficult and you might give up on it or something. what's the plan? good luck with your blood tests. i hope everything runs smoothly. courts
leslie	posted 05-23-2005 11:24 ET (US)          Courts, My treatment from the beginning has been very aggressive. Started at 100mg/day for 10 days then have dropped by 50% every 2 weeks. Yes if all is right with lab results I will go from 2.5/day to zero. I was literally psychotic on the higher doses but the alternative to prednisone was to remove my spleen which my hemo doc didn't want to do. Not too worried about the withdrawal, rather don't want a relapse of the anemia. I suspect I can handle the large doseage drops since I haven't been on the drugs that long (just coming up on 4 months). I'm told the longer you're on prednisone the slower you have to taper down. So for now I'm looking forward to being drug free and losing my belly!
courts	posted 05-23-2005 17:37 ET (US)          yippee =)
Carolan	posted 05-24-2005 12:06 ET (US)          leslie,   100 mg a day!!! Wow, that made me dizzy just reading that number. LOL They'd probably have to put me in a rubber room if I took that much! ;)
leslie	posted 05-27-2005 20:54 ET (US)          My husband will be starting a prednisone treatment of - get this - 1200mg/day for 10 days(25 pills every other morning). Then he goes off cold turkey. This is for MS. I sure hope the doctors know what they're doing!
JulieB	posted 05-28-2005 12:14 ET (US)          Hello All, I have been on and off of 'Prednisone' for 21 years for acute asthma. I now have been off of it for a week. My primary care doctor has put me on 'Advair', which is a God Send. If anyone has to be put on 'Prednisone' please be careful with taking it and coming off of it. Do NOT just come off of it 'Cold Turkey', especially if you have to take it for a long amount of time and at a high doseage. There is many side effects, so make sure you discuss this drug with your doctor and understand what you are getting into with takeing this or any prescription drugs. Be Careful and Safe; JuLiE
Carolan	posted 05-28-2005 21:12 ET (US)          leslie,   Wow, that is scary! I have NO knowledge of how MS is treated, though, so maybe this is how it's done. Do question your husband's dr. about it, though. If he's worth his degree, he'll take the time to explain why such a high dose is used.   Chin up, Carolan
leslie	posted 05-29-2005 13:08 ET (US)          Carolan, Apparently very large doses of prednisone are used for MS when a patient has been suffering a prolonged attack. Apparently the prednisone goes directly to the swelling in the brain. His dosage is very high but only for 5 days then off. I understand this is a widely used treatment and often very successful. We've got all our fingers and toes crossed on this one!
Girlaz220	posted 05-30-2005 02:07 ET (US)          Jessica, you had mentioned that your eyes flared up, I was wondering what kind of problems you have with your eyes. I just started prednisone eye drops last week. I feel like the optomitrist just gave them to me because seh doesn't know what's going on. I would be happy to hear from you. Karen
leslie	posted 06-17-2005 10:50 ET (US)          Been off the prednisone now for a full 2 weeks after a 4 month course of treatment and proper weaning. I started losing my hair just a few weeks before I stopped the meds. 2 weeks later and I'm still losing my hair with no signs of it slowing. Has anyone else experienced this??
caljacqui	posted 07-10-2005 18:47 ET (US)          I have been on 15 mg of prednisone for 10 months now. I have recently started weaning, and am done to 8 mg. The schedule I am using is to wean 1 mg every 3 days or so. I have had lethargy, joint and muscle pain and crankiness. I've also gone off methotrexate and oxycontin (not all at once, I'm not a superhero!!) recently and know the hardships of withdrawals. Good luck to all the others in this boat!!!
Dana15	posted 07-22-2005 22:28 ET (US)          Hey all just found this site! I just got off the stuff three weeks ago. experienced vomiting and tierdness (still have). I was wondering if any one has lost the weight they gained from being on this stuff...I have gained at least 15lbs and am wondering how long I will have to wait to see the pounds come off. Thanks all dana
Carolan	posted 07-23-2005 09:22 ET (US)          Hi Dana, welcome to the board!   Yes, it is common to gain weight while on prednisone. I know some women on Weightwatchers who are managing to lose weight while on it, although VERY slowly. It's frustrating.   The weight should come off once you are weaned off, although it may not necessarily just melt away on its own. It may depend on your age and activity level. I didn't used to have a lot of trouble with taking weight off, but now that I'm (ahem) getting older it's more and more of a battle!   It's important to limit salt, and flush your system out with tons and tons of water. Don't forget your calcium with vitamin D, either. Not only will it help prevent the bone loss side effect, it could help with the weight loss, too. Drink your milk, eat your yogurt and cheese, and take a supplement.   Nice to have you here! Carolan
sojoe	posted 09-06-2005 20:43 ET (US)          Hi, I'm 15 years & I've been on prednisone for 4 months, started off at 40 mg. I was given prednisone because i have an eye problem that they describe as being something like VKH. in which my immune system has attacked the pigment in my left eye.. & I've had eye inflammation. the inflammation is mainly why I have been perscribed prednisone.. currently I have been on 10 mg for 3 weeks & will be for 2 more where I will go down to 7.5 mg for a month & 5 mg for another month. I have gained about 8 lbs.. ahhhh it isn't fun, but since I am beginning to taper off of prednisone I wanted to know what I can expect from the taper. My doctor says that one of the reasons that I may be handling prednisone so well is because of my age.. would I begin to lose weight as the drug is being tapered off, or will I have to wait until I am completely off prednisone?
Carolan	posted 09-06-2005 20:58 ET (US)          You may notice a difference as you taper off, but the weight may not completely go away until you've been off the stuff for a while and it gets out of your system.   Are you also taking eye drops for your eye inflammation? I also had the "iritis" or "uveitis" in one eye when I was a teen. It settled down and I didn't have to take drops for many years. You will need to get regular checkups, though, even if the inflammation goes away on its own. It leaves behind scar tissue that could cause glaucoma as you get older, so just keep up with your yearly exams. I don't mean to scare you, but please just stay on top of it and don't neglect your annual exams, even if the problem seems to go away!   I have a lot of "floaters" in that eye still. I've gotten used to them, but once in a while I think there's a bug flying by my face but it's only a floater. LOL
sojoe	posted 09-06-2005 21:03 ET (US)          Thanks Carolan   yeap been taking a lot of eye drops, Pred Forte sound familiar? but that lead to high eye pressures so I was put on 3 other eye drops as well.. hehe, I dont know how I kept track of them all! Do you know approx how long it takes for the prednisone to flush out of the system? are there other withdrawal symptoms, I heard that joint pain may be one of them?..
sojoe	posted 09-06-2005 21:17 ET (US)          oh yea, & I forgot to add.. so far I haven't been having any trouble with tapering off of prednisone. well there was one time where I felt my eye inflammation had increased, but I instilled one drop of Pred Forte (a steroid anti-inflammatory eyedrop) & the next day i went for a check up & he said there was barely any inflammation.   & yea! i do see floaters, it's actually just one small black dot that occasionally shows up. Other things that is wrong w/the eye is my vision. things are smaller than they are supposed to be. the doctor says i have some leakages or spots in my retina & they may be permanant.just as long as I am finished w/prednisone & the inflammation is controlled!! I'll be happy that I still have my vision!...well it comes in handy when you are bored in class & you can make the teacher's head big & small again... hehehe
Carolan	posted 09-06-2005 22:39 ET (US)          Yes, that "things look smaller in that eye" happened with my eye, too! I've always had to wear two different prescriptions of contact lenses in each eye. It got worse as I got older - I need a bifocal in the affected eye but not with the other one. It's weird. :) My eye doc gave me some new contact lenses called "multifocal" - they work like a bifocal glasses lense but without any kind of line. It's pretty cool. I have to constantly use rewetting drops, though, because if they get the least bit dry they don't work as well.   {{PredForte}} Oh yeah, I remember that well. :) I'm also on three drops for glaucoma, which developed later in life. It was probably a combination of family history, the use of prednisone over the years, and the scarring in the eye.   {{tapering off symptoms}} The only thing that bothers me is sleep disturbances, particularly when I would be tapering down. I'd get insomnia. Also a nasty dry mouth. I rarely, rarely do the oral tablets any more. If I have a flare, my doc gives me a big shot of liquid prednisone in my hip muscle. It gives me a big dose that gradually leaves my body, so I don't have to mess with tapering off. It works for me, tho it may not work for everyone like that.   Cheers, Carolan
missy	posted 10-01-2005 15:27 ET (US)          Thank you all for making me feel better reading your stories. I just got off prednisone after 9 months, for an orbital inflammatory pseudotumor in my eye, which no one knows how to get rid of nor where it came from. The weight gain has made me nuts. The face, the belly, I look like porky pig,which is who I tell them I am at the doctors office. So, from what I am hearing from all of you is that the loss of weight may not start for over a month or so? Is that correct?
Carolan	posted 10-04-2005 22:21 ET (US)          Missy,   I'm not certain how long it will take; I'm sure everyone is different. It may come right off, or it may take some time! Limiting your salt intake and drinking tons and tons of water will help, though!
missy	posted 10-05-2005 17:23 ET (US)          Carolan   Thank you for your help.But I just went to the doctor today and the eye is swelling again so we now go to step two, RADIATION. Im not a happy camper.Thanks again. Missy
Carolan	posted 10-05-2005 21:26 ET (US)          Oh, no! I'm so sorry to hear that! Let us know how you're doing.
jason tumblod	posted 10-06-2005 21:12 ET (US)          I have been on prednisone since I was about 17yrs old, I am 27 now and 2 months ago I completely stop taking it. I didn't just stop cold turkey it took 5 months to come off. When I was at 2mg a day I started getting gout attacks. I always had gout attacks since about 19yrs old but that was because I drank sooooooooo much beeeeer. I haven't drank a drop of any alcohol for about 4mnths now and I'm getting gout attacks every other week. I miss beer I love beer I might as well drink beer.
Carolan	posted 10-07-2005 10:06 ET (US)          As Shakespeare said (at least I think it was...somebody correct me if I'm wrong):   "Beer is proof that God loves us and wants us to be happy."   But seriously...   Is there something else in your diet that could be triggering the attacks? Here is a web page that has some information:   http://www.health911.com/remedies/rem_gout.htm   Look under the section entitled "Causes". I had no idea gout could be triggered by so many different foods or environmental factors, including allergies.   It might be a good idea to try eliminated certain common food triggers, one at a time, and keep a log of the freqency of attacks. I think you've established that beer isn't a factor, so it's time to try eliminating something else. A qualified allergist might help with this process.   Good luck!
sojoe	posted 10-10-2005 22:56 ET (US)          I have recently tapered from 7.5 to 5mg about 2 days ago. Today I have a wierd feeling in my legs & arms..started off in my knees. It was sort of like a numb feeling..or maybe something more like a cramping feeling not sure how to describe it.. At first I had thought it could have something to do w/my blood pressure but my pressure is normal. Could this be a withdrawal symptom?
Carolan	posted 10-11-2005 22:27 ET (US)          Could be... but check with your doctor to be sure.   When I've had to taper of prednisone, I get restless legs and arms, especially at night. It's an uncontrollable urge to move or shake my limbs as if to burn off excess...something! It's weird.
kebard	posted 10-18-2005 21:33 ET (US)          hey there i have had both hips replaced and my left shoulder replaced and i am going in this winter i am having the right shoulder replaced because of prednisone. mind you i am only 27 years old. i was diagnosed with acute lymphocytic leaukemia when i was 17 and took massive chemo. It destroyed my joints but the way i look at it either i took it or i suffer the consequenses, being in a pine box, and i am glad to be alive. i have one son that was conceived before i was diagnosed and one that i married into and i am the only one he knows as dad. i cannot have anymore kids because of the chemo. if anyone would like to talk about chemo or leaukemia i am more than willing to talk. just email me at adrabek@mchsi.com thanks
kebard	posted 10-18-2005 21:43 ET (US)          i was going to mention i was on 350-400 mg of prednosone daily for about 2-3 weeks every 6 weeks. i had a heck of a time weening off. i would wake in the middle of the night with my knees locked up and it took all i had to get to the bathroom to get a glass of water to take my hydrocodone. i usually took 10 mg of that or else i would take some roxanol(oral morphine) sometimes both just to get it so i could deal with the pain. i remember one time in particular that i woke up and i was in so much pain i couldnt speak to wake my mom to help me and she was only in the next room. i managed to get to my door and tried with all i had and finally she woke and came to my rescue. there were also times i would just be standing there or walking and i would just buckle and go down in a heap and had to wait for someone to come and help me back up. i have lived through death, i stared it right in its beady little eyes and turned around and walked the other way. when i was born i died once and then the night i was diagnosed i died 3 times in rochester minnesota's mayo hospital. i don't remember anything of my first 3-4 days i was in the hospital then. all my organs had shut down because of white cells clogging them. i had a white cell count of 426,000. yes that is right normal is high of 13,000. i held the record at mayo hospital for 3 yrs until a little baby came in and had 1 mil and died.
Carolan	posted 10-18-2005 22:38 ET (US)          Hi kebard, wecome to the Creaky boards, and THANK YOU for sharing your amazing story. We have all dueled with the pain monster, but not to many of us have danced with death and lived to tell about it. How are you doing now, aside from the joint replacements? Isn't the "magic number" something like 5 years?   Again, welcome!
missy	posted 10-23-2005 13:33 ET (US)          Hi all. Just to keep you posted last week I had my MRI after the machine breaking twice. The good new is that the tumor has grown very little. This Monday 10/24 I have appointment with the radiologist if I dont get blown away by hurricane Wilma. As for being off predisone for 4 weeks still have only lost 4 pounds. But as I have read from others the knees and hands and back are all creakyjoints. What a bear. The other problem im having is is cant sleep. I sleep for an hour and then I up all night. Is this also side effects from this stupid drug?
sunflower	posted 12-08-2005 12:33 ET (US)          Hey guys,   I've been "out of the loop" for awhile-- experiencing horrible flare with this Baltimore weather, stress, etc. Doc is ordering me to get a large intravenous dosage of prednisone next week for three days at hospital and then will be off of the nasty stuff. Has anyone experienced this before?   I used to be on 15 mg a couple of years ago-- was never able to wean lower than 2.5 mg but the thought of going back on in any shape is awful! I too am a prednisone-clothing hoarder! :)   Any similar experiences would be helpful! Thanks-- have been thinking about you all a lot lately.... :)
Carolan	posted 12-08-2005 11:57 ET (US)          Hi sunflower,   I've had the intramuscular shots, but not intravenous. I'll be interested to hear how it goes! :)
mel8122	posted 12-17-2005 17:37 ET (US)          Im scared. I was prescribed Prednisone 10mg for 10 days and the doctor didnt taper me off of it. Ive been off of it for 5 days and am experiencing restlessness/anxiety/nervousness. What should I do? When will these side effects go away?
awoo10	posted 01-01-2005 16:25 ET (US)          Hello all Prednisone junkies! I have been on the stuff for the last eight years and just two weeks stopped a minor dosage of 2mg per day. I had times throughout the last eight years where it was more than 100mg per day and it has taken its toll on my bones and joints. At the high doses, can you say moodswing? I have a biopsy on the 17th of this month, so I'll see if I have to get back on it again.   Just as Kebard below, I did the same dance as he in the same exact hospital. Was in CHF and was paddled a few times (on Christmas day even) and finally had a heart transplant hence the steroids.   Basically the drug sucks. I experienced everything from mood swings, tremors or constant shakes, loss in bone density and the list goes on. Understand I'm not complaining because on the date of my biopsy (February 17th) it will 8 years post tranplant and I never thought I'd see 30 years old.   Since my transplant, I have had the opportunity to experience so many things that life has to offer; some good and some not so good. I have surfed in Hawaii, been scuba diving in the Bahamas, was on a local water ski team 4 months post tx and spent two years racing with Porsche/BMW club on tracks I only dreamed about one day racing on. As one might imagine, I have no physical restrictions. Point being, I was on Prednisone doing all the things above and I would go through it all again if it would give me more days on this earth. Life is so precious. Cherish it like were your last!   May we all be healthy and properous in 2006! Peace.
ocean20	posted 01-01-2005 21:44 ET (US)          awoo10, You had a very interesting and informative post. Yet, could you clarify whether you meant that you just stopped a 2mg/day pred. dose or you reduced the dose by 2 mg/day. Thanks. Happy new year.
awoo10	posted 01-03-2005 21:21 ET (US)          I have totally stopped prednisone and await a biopsy on the 17th of this month. If there isn't any rejection I stay off Predisone for good, if not they might put me back on it. We shall see. Peace to all!
Carolan	posted 01-04-2005 08:40 ET (US)          awoo, you are an inspiration! Thanks for sharing your perspective. It's great to have you here! :)
ocean20	posted 01-04-2005 22:24 ET (US)          awoo10, Best of luck and hope you will never need the pred. again. But, if you do, many have been living with it for tens of years. There is always life out there just the quality needs to be managed.
lillybell	posted 02-27-2005 19:04 ET (US)          Jessica,   What kind of flare did you have in your eyes? I have dermatomyositis but the eye swelling was the first thing that happened to me. I started on 80 mg of prednisone in October and just finished tapering off last week. I flared up every time I got to 10 mg, and now my eyes just seem to flare up arbitrarily. I just wanted to see what your experience was like as I haven't encountered anyone else who had the eye issues, too. Hope you are well! --Erin
bonbon	posted 03-28-2005 23:33 ET (US)          I have been on Prednisone for about 2 years now. I was diagnosed with RA, which came on suddenly. I first went on Methotrexate and it made me so sick,falling down,and legs like concrete...then Remicade, and was allergic to that. Now on Humira, and down to 5 mg every other day of Prednisone. I just found out after having horrible hip,groin and back pain that the prednisone is causing avascular necrosis in the head of my right femur/hip joint. I may need a hip replacement. No doctor ever told me about that side effect of PREDNISONE...that it increases the chances of bone destruction because of lack of blood flow to that bone and joint....Great, huh? We actually are increasing our risk of accelerating what we are trying desperately to preserve. Now, getting off the prednisone and facing more pain is hard to deal with. I want to stop at once, but don't know how. I am seeing a different doctor due to a move, and have not had a chance to talk to him about this. It seems that if I took 5 mg every other day, I could go to 2.5 every other day , but not sure how long, maybe a week, or more depending on my body reactions...I was off it 4 days and read these posts and then immediately took 2.5 mg..I will call my doctor in the morning, but would like some input from you all. Thanks for any advice. I am also on Humira every other week.I wish there was a way to be meds free and heal naturally. Any prayers are appreciated. I live in pain.
Carolan	posted 03-29-2005 14:06 ET (US)          Bonbon, I learned about that little side effect of prednisone the hard way, as well. I've had both hips replaced and now stay away from oral prednisone completely.   It sounds to me like your current dosage is pretty low, but everyone reacts to it differently. What one person tolerates, the next person gets damage from. You could try decreasing the dosage 1/2 to 1 mg at a time, and take your time with it - stay at one level for a week or more, until you feel stable. Consult with your doctor first, of course!
Tammy	posted 04-16-2005 12:17 ET (US)          It has been a real help reading what everyone has to say. I just found this webpage. I have been taking predisone for 2 years. I was just recently in the hospital for 2 months. My body was attacking my cartilidge first then it went to my veins. I first started on predisone and methroxate. Then remecade, things started getting worse so that is when i got put in the hospital and was on 500mg a day of steroids. Now i am down to 10mg (just today) and i am wanting to go down even lower. I am so swollen (face, neck, arms, back ect!!! I want it to go away so bad i can't stand it. I am taking Cytoxin now which is a chemo drug that is really helping besides the throwing up and anemia problem. Could someone tell me how long to expect the swolliness to stay around. Thank you Tammy
Carolan	posted 04-16-2005 15:40 ET (US)          Hi Tammy,   Welcome to the Creaky boards!   I wonder if an antinausea medication like phenergan wouldn't help with the vomiting?   Hang in there!
Tammy	posted 04-17-2005 13:21 ET (US)          Thanks for responding. I am taking phenegran every morning. It makes me really sleepy. Are you also on predisone? I was taking 10mg and i think i'm going to stop taking it. I feel miserable. what do you think?
Carolan	posted 04-17-2005 20:51 ET (US)          At 10 mg, I wouldn't just stop taking it. You could throw yourself into a rebound flare. Check with your doctor about tapering off.   I'm not currently taking any prednisone - in fact I try never to take it orally any more. If I have a flare, I get an 80 mg shot of Kenalog in my hip. More often then not, that takes care of the flare. But everyone is different - the Kenalog works for me because my flares are fairly predictable (twice a year in spring and fall, give or take) and thanks to methotrexate, the flares aren't as acute as they used to be.
Tammy	posted 04-18-2005 16:41 ET (US)          I quit taking methrotrexate when they started me on cytoxin. Now i just take cytoxin and predisone. It has been really nice talking to someone who has been through something similar. I go back tomorrow for more blood work that i get every 2 weeks. My blood count (hemaglobin) has dropped to a 7 and if has dropped anymore they want to give me a blood transfusion. My White count is 2.4. I don't know what will happen but i'll take what i can get. Thanks for talking
jessica06	posted 04-26-2005 17:56 ET (US)          I am new to this site and I just read whats been going on with people like me. I've been dealing with predisone for almost 10yrs and it is very discouraging to know that with this med it can change you so much gives. Right now I'm struggling with weight gain no matter what I try I just cant lose the weight I tried stopping it cold turkey but that didnt work and cause of that i'm now on a higher dose than before I should be use to this by now but truth is Im not. Is there anyone feeling like this if so let me know how you're coping.
Carolan	posted 04-26-2005 20:47 ET (US)          Hi Jessica!   If you go over to weightwatchers.com, they have free message boards. You don't have to be a member to join in the discussions. If you nose around the boards a bit, you'll find people who are in the same boat, who are trying to lose weight while on prednisone.   Hang in there!
MelBlan48	posted 05-03-2005 13:28 ET (US)          Does anyone out there know how to lose the Prednisone weight? I'm on 2mg. at this time, my face has gone down but not my body!! Getting discouraged. Been on Prednisone for one year, never been on it before. Please Help!!!
Carolan	posted 05-03-2005 18:13 ET (US)          From what I've been told, the two best things to do are to drink tons of water, and cut way, way back on salt/sodium. Look for hidden sodium in processed foods and even in sodas. Even diet soda is full of it.
elmode	posted 05-04-2005 03:03 ET (US)          Hi from what I've learned from my experience is to cut off salt for at least one month. What Carolan said is true. The salt is hidden in every food (for example cheese) but if you try to cook without any salt I believe you will see results but you have to be patient. Remember that there are many of us understanding you. You will lose the extra pounds.Remember to drink a lot of water.
ocean20	posted 05-09-2005 01:36 ET (US)          I like to report that I was able to cut my 10mg/day of pred. to 5 mg/day in six weeks after I started Enbrel. I am elated and can not wait to get the pred. out of my system.
CoolScully1115	posted 05-10-2005 19:20 ET (US)          Hello, all. My mom is the one on Prednisone, she has a condition called ADEM. She was prescribed 80mg to start, back in January, and has tapered down to 5mg, beginning last week. I am scared because she is so depressed all the time. You used to be a master's candidate for special education, now, she never reads, or writes, or even listens to books on tape, saying it's because she can't see. She's also very defiant, eating salt against doctor's orders, knowing she's pre-diabetic because of the steroids. She won't do for herself, unlss pushed by a health official. I am scared. I am her daughter, not her mother. Should I attribute this behavior to the prednisone? Please advise.
Carolan	posted 05-11-2005 09:54 ET (US)          That is really hard to say without a doctor's diagnosis. It sounds to me like she is clinically depressed and needs medication. Prednisone can "mess with your mind" for some people, making them irritable. Getting her to go to a doctor, though, sounds like it is going to be a challenge! Best of luck!!
CoolScully1115	posted 05-14-2005 15:35 ET (US)          Thanks for your advice, Carolan. If it was directed toward me, it was sound. In fact, were gonna take her into the doctor for another MRI to be sure, but I think she is suffering from Prednisone Withdrawal. We may have even weened her down too quickly. I read these other postings, and I definitely think so. Have you ever experienced Pred W/Drawal? How long does it last?
Carolan	posted 05-14-2005 21:30 ET (US)          Again, it's hard to pin down because everyone reacts differently to the same drug. It has been a very long time since I took oral prednisone. Sometimes I could wean off uneventfully; sometimes it seemed to take weeks or months before my sleep cycle was back to normal. (that was my main symptom - insomnia and restless muscle syndrome). Rest, good nutrition, and lots and lots of water will help!
MelBlan48	posted 05-14-2005 22:40 ET (US)          CoolScully1115 Hello, just wanted you to know that i'm on 1mg. of prednisone after weaning from 60mg. a year ago, it does make you depressed, I feel numb, I really don't care about anything, and I'm also on synthroid, and Zoloft. The prednisone has a strong affect on you mentally, and physically. I feel really exhausted all the time, and my joints hurt. Good Luck and God Bless, it's tough to get through, I'm still fighting it.
CoolScully1115	posted 05-15-2005 16:56 ET (US)          Carolan and MelBlan, thanks for that advice. this is really scary stuff. She is lethargic like you described, and she doesn't seem to care about thing she used to. She's starting cognitive therapy once a wekk, and physical therapy twice a week. I don't want to push her to hard, but its been since January that she's felt compelled to do anything.
MelBlan48	posted 05-16-2005 11:04 ET (US)          coolscully, Just keep being there for her, alot of people who never have taken prednisone don't really think that it's the pred. doing that to you, but it does change your outlook on life, she can't help the way she feels being on that garbage. Just give her lots of love and reassuring her that it will be o.k. soon. I'll pray for her and your family to make it through this, God Bless!
CoolScully1115	posted 05-16-2005 18:32 ET (US)          Thanks for the kind words, MelBlan. Tell me, have you ever heard of anyone ever having issue with memory, or repeating things, or having to ask qstns over and over, because of prednisone? Moreover, she;s confused, asking for her sister who loves in Michigan at least once a day, when we live in MD. We have an MRI scheduled on Friday, I'll let you know what happens.. :)
MelBlan48	posted 05-16-2005 23:41 ET (US)          coolscully, they say that Prednisone can make some people halusinate, and i definitely can relate to her forgetting things, you totally loose your memory, i forget when i'm talking, and what i'm talking about.Sometimes you search for words and can't remember what you wanted to say, does that make sense to you? The stuff is an ugly drug, it turned me into someone i don't even like. I just feel numb all the time, like nothing could bothor me.
CoolScully1115	posted 05-17-2005 14:16 ET (US)          Wow, MelBlan, that is SO accurate in so many ways. i had begun to worry that maybe the viral infection was taking its toll even further, but knowing that, I feel I understand her situation more, thanks ;)
MelBlan48	posted 05-17-2005 17:33 ET (US)          coolscully, Just do what your doing, being there for her, she'll pull through like a champ! Lots of prayers and luck your way!!!
MelBlan48	posted 05-22-2005 19:49 ET (US)          I am now Prednisone free!!!!!! I'm so excited, it's been 4 days now, and i feel pretty good, my energy is picking up, I can now mow the grass without resting in between sections. I am so excited!!!! Good Luck to everyone on your prednisone journey, I will send prayers to all of you! God Bless to all!!!
MelBlan48	posted 05-30-2005 22:34 ET (US)          How long does it take for the swollen anlkes to go down, what to do?
Carolan	posted 05-31-2005 12:04 ET (US)          I'm not sure how long it takes, but maybe you could wrap them in ace bandages, or use those elastic or neoprene ankle braces for gentle compression. My feet swell on planes and when I'm standing a lot, and the wraps and braces help.
MelBlan48	posted 06-01-2005 16:18 ET (US)          carolyn, Thanks. I'm almost through all this with the weaning, i'm done with the Prednisone but I still have a few symptoms, but that's to be expected.
Michelle2	posted 06-10-2005 23:07 ET (US)          Hi all. I know prednisone has its uses... but the side effects make it barely worth it. Reading the board and seeing the tapering amounts makes me really question my doctors. They had ne jumping dwon by 10 mg a week when I was switching my meds to methotrexate. And after a week at 10mg, I simply stopped. I was tired and there have been a few times when I have simply "crashed" and had to sleep, but I attributed it to the methotrexate. ??? Oh well. Happy to be off prednisone!
SCgirl79	posted 06-13-2005 21:16 ET (US)          Hi all, I was diagnosed with ulcerative colitis in March.I was put on 40mg of prednisone and immuran 150mg. I have been off the prednisone 2 1/2 weeks. I tapered from 5mg to nothing. I feel ok. A little tired but I felt that way on the prednisone as well. I seemed to start gaining weight as I tapered from 20mg and lower. There was no weight gain before that. Now that I am off it I seem to be gaining some weight and it seems it is all going to my belly. It is really horrible. I thought the weight gain was during prednisone use, not after. Has anyone else gone through this? Will the weight gain stop after awhile? I started going to the gym last week and I use the treadmill as well as keep track of my calorie intake. No matter what it does not seem to help. Any advise is appreciated. Thanks!
Carolan	posted 06-13-2005 23:29 ET (US)          Are you taking any other meds? I was on Prilosec for a while for GERD, and it bloated my belly.
SCgirl79	posted 06-14-2005 14:17 ET (US)          I am also on azathioprine, which is an immune system suppressant, but weight gain is not one of the side effects, actually weight loss is one. Thanks!
frank	posted 07-02-2005 02:27 ET (US)          Hey people, I was diagnosed with UC one and half years ago and attempted to taper off the prednisone a few times. Two times I tried doing it before my symptoms were entirely gone, which I think is the biggest mistake. As bad as the side effects are it is better to wait until you are entirely in remission. As for the tapering itself, I felt fine until two days ago. I was tapering 1mg a week starting at 15mg. Two days ago I reached 3 mg and starting getting small symptoms again so I went back up to 5. I have been feeling really tired for the past few months and wasn't sure whether it was the drug or I was just lazy or out of shape. Definitely the drug.
Charlie2020	posted 07-03-2005 09:47 ET (US)          Hi everyone Has anyone been using prednisone for ocular myasthenia gravis disease? My doctor prescribed it to me a year ago and now has taken me off it. I am starting to have numbness in my face as well as being very lethargic and grouchy. I would appreciate anyones advice that has been here. I have been off the med for 1 week now and tapered before that.
jedna	posted 07-23-2005 15:00 ET (US)          A word of warning for everyone tapering off prednisone after being on for more than a year - MAKE SURE to get your adrenal function checked folks! Adrenal insufficiency is very common with people who have been on prednisone long term (even as low as 10mg). Unfortunately, rheumatologists don't seem to mention this - and don't test for it unless you ask them to. You would need to see an endocrinologist or have your rheumatologist order a "cortisol stimulation test". From what I have read, this is why so many people have trouble tapering below 5 mg of Prednisone - your own adrenal glands used to produce between 5 and 7 equivalent naturally, but now they're "turned off". The adrenals would also automatically give you extra cortisol when you are in some sort of stress or trauma - but if they are "off" they won't do that and you can go into what's called "Adrenal Crisis". This can be life threatening. I found out the hard way - emergency rooms are clueless when it comes to this. I now wear a medic alert bracelet and have injectable steroids in case I can't swallow additional pills during a traumatic illness. If you would like more information on this - I found a pretty user friendly website: http://www.cushings-help.com/911.htm   I have it printed out and in my purse with my medication list at all times now.   Good luck all - tapering off prednisone can be SO hard. Hang in there
twinsmom2	posted 08-17-2005 11:22 ET (US)          Hi, My husband has been on high dosages of prednison for months now going on eight. While in the hospital he was given IV prednisone I can't remember how much. The doc has tried tapering him from 80mg. He was down to 5mg when his eosiniphils started going back up. He was told to go back up to 20mg. He was diagnosised with HES (hypereosiniphilic syndrome)which is a rare disease with no cure. His doc wants to send him to a hemotologist. They are going to take him off prednisone (hopefully) and try Cellcept or some form of chemo. From his waist up is very swollen and all his hair is falling out. I do mean all his hair, his eyebrows, eyelashes, facial, underarm, legs all hair. Is this normal? Does anyone know anything about Cellcept? Is it as bad as predinose? We are so in the dark about all of this. Help!!
Carolan	posted 08-17-2005 13:15 ET (US)          Hi twinsmom,   From what I understand about prednisone, it more commonly causes excessive hair GROWTH, not hair loss. I looked up your husband's condition and find that "The skin is among the most common organ systems involved" (source: http://www.emedicine.com/med/topic1076.htm), which leads me to think that his hair loss MIGHT be a function of the HES, not the prednisone.   Also, is he taking anything else beside the prednisone? Any immune suppressor could cause hair loss.   Then again, everyone reacts to the same medicine in different ways - it could very well be that the prednisone is causing hair loss for him. Perhaps a visit to a dermatologist would help? Your pharmacist is also a great source of information.   Good luck! So sorry to hear your husband is struggling with this syndrome. [[hugs]]
twinsmom	posted 08-17-2005 19:01 ET (US)          Hi Carolan, Thanks alot for your reply. My husband is seeing a dermatologist (his primary doctor). he is the one who put him on prednisone. One of the doctors on the web site you gave me, Vincent Herrin, a hematologyst and oncologist is just an hour away from where we live. Since he has written and studied HES I think we should go see him. Thanks for bringing this to my attention. I plan on asking his doctor to arrange it. My husband is not on any meds besides something for his stomache so that the predinose will not bother it. Never thought about the HES causing hair loss. He had kindney failure twice and a horrible thick red rash from this syndrome. Will check further on the syndrome causing the hair loss. Thanks!!
sheena	posted 09-08-2005 02:09 ET (US)          my first comment will be to Twinsmom2..i wanna tell you that i don't know much about Cellcept..but i was on it for about a year. they never told me what it was for exactly, but i know i did lose almost all of my hair..ye, on my head, arms, legs..everywhere. i'm not sure if that's supposed to be a side effect of the drug, but i definately experienced it. if that helps any? i hope..   now onto what i originally came here for. i'm not on a taper of this drug..unfortunately. i'm 21 and was diagnosed with SLE a year and a half ago..i was put on 60mg..which i nearly ODed on. not that high of a dosage when i look at some that where on 100mg. but it was still enough to give me avascular necrosis of the hip..i had to have a partical hip replacement. (sad, but kind of nice to know that i'm not the only younger person that has had to get a fake hip) they did taper my prednisone down to 5mg a while back..but that landed me into the hospital..and a second blood transfusion. i never had a chance to see the results of weight loss from the taper.   i'm on 15mg right now. i'm really depressed because there's no hope in the near future for me to come down for a while. the doctor says that my kidneys -will- fail if i go any lower. which is a scary thought..but i want so badly to lose this weight..my frame was never meant to carry so much. i gained a total of 40lbs. on this stuff. i have stretch marks that are just plain ugly.   i gave up hope on keeping my 'skinny clothes'..i threw those 5 months after i was told i was supposed to be in remission. i just want to know if there's anything i can do in my present state to lose -some- of the weight. i know i can't make it all go away..(though my relationship with my fiance is not goin so well with the weight) should i talk to my doctor about going on a diet? or putting me on some sort of eating plan? i'm just really desperate to find some relief.
Carolan	posted 09-08-2005 12:40 ET (US)          Hi Sheena,   Ask your doctor to refer you to a dietician. Sure, you need the prednisone, but carrying the extra weight isn't healthy, either. A dietician will help you take a serious look at your food intake and help you find ways to improve it and maximize the chance you'll drop some weight despite the meds.   I know of some people on Weightwatchers who are losing with prednisone - slowly, but it can happen. From what I understand, it's very important to drink tons of water and cut out the salt.   You do what you can do. If your fiance has a problem with the weight, my feeling is that he isn't the man for you. He ought to love you for you, not because your body is a certain shape.   Hugs, Carolan
sheena	posted 09-08-2005 15:22 ET (US)          thanks. i'm glad someone responded so quickly. ^_^ i'll be seeing my rheumatologist next week, so i'll definately bring that up.   since i've gotten sick, i've been drinkin tons of water..sooo, that shouldn't be a problem. but the salt intake..man..that'll be hard..practically everything has salt in it..at least the tastey stuff =P   thanks for the reply and support! *huggles*

Hop to: Whose fault is this?Non-Traditional TreatmentsQ&AFeature FeedbackTraditional Meds and Side EffectsYoung AdultsI'm Feeling VulnerableThe Cutting EdgeThe Remission Zone