PredniSONE and weaning

This is my second bout with what my doctor thinks is erlickiosis. The first time I was at the point where I could only move like an old man doing "the nursing home shuffle". Everything was swollen. Feet, hands, knees even my jaw was hurting. I couldn't stand on my own even though two weeks prior I was walking 3-5 miles per day on some good size hills. I was hospitalized and given steroid injections. Within 12 hours I was standing on my own. I was given Perdnisone 30 mg X 3 days 20 mg X 3 days 10 mg X 3 days 5 mg X 4 days. Except for some insomnia and peeing 5 times a night there were no other effects. Within 2 days I was crippled again. Now my GP was in Africa and my Internist was leaving for vacation in India. Internist would not put me back on Prednisone because he wanted me to see a Rhumatologist. I made an appointment but it was SIX WEEKS OFF. Two days later i was admitted to a different hospital. This one was where my Rhumatologist had access. Long story short Prednisone 80 mg 7 days 60 mg 7 days 40,20,10mg 7 days each. Had to start taking insulin again. Glucose never went over 200. Avg glucose last 5 weeks is 120. Gained 5 pounds because I work out every day with free weights and lots of cardio. Hopefully, I won't have to many side effects when weaning is accomplished.

Well folks, its coming off time and it is no fun. i have only been on l5 mg and under for a short time, but im weaning and have laid aside the entire week for that. im tired, very sleepy, headache and feel as if a spoke or two is missing.lol

I was prescribed 42 pills (20 days) of 10 mg Prednisone which I am to take beginning with 4 pills for four days and steadily decreasing every four days down to four 1/2 pill the last four days. I took my first dose yesterday and was told to drink lots of water. I do not wish to gain weight nor have a moon face. My doctor does not feel this will affect me in that way, but may have water retention (swelling). I am 73, and this regiment of Prednisone was prescribed to decrease inflammation due to a possible siatic nerve problem, which is causing extreme pain in my left leg. The pain is excruciating when I get up in the morning but eases down by mid morning with some pain all day and some nights if I move just the wrong way.Does anyone have a suggestion for the best foods to eat and what to avoid? I read that grapefruit juice may be beneficial.

In June I found out I had actue renal failure. One of the many medications I was given was prednisone. After a few weeks I grew so weak, tired and in a lot of pain. I even had to take a medical leave from work(4 months).
I was told to expect the moon face, hunchback, the acne..However, my sypmptoms worsened to point I didn't want to eat(lost 30 lbs) could hardly move and had to be hospitalized(almost went on dialysis). They flushed me out for a week at the hospital and avoided dialysis.
Once out of the hospital I proceeded to keep the weight off, but the side effects just mounted. I had thrush in the mouth(the worst feeling), sleeplessness, I had every side effect listed and I mean all with the exception of hallucinations and depression. The miracle was that what I was expecting weight gain, moon face did not happen.
Around September my doctor started weaning me off prednisone b/c I told him I cant take it anymore. Wouldn't you know it the minute I started getting weaned off the medication I got the moon face and acne. I cant beleive how much acne I have and the moon face and extra chin that came along with it are not cute. In 3 days I gained 10lbs and feel like I'm gainiing everyday. This might bring on the depression that has yet to occur. Why is this happening now that I'm being weaned. I started at 80mg a day and now I'm down to 30mg and next week down to 20mg.
I know this drug did its job and I pray that I dont have to be on it at all once the weaning process is over, but this is hell. I really feel doctors should tell you everything that you can expect. I didnt know enough about this drug(I know there is the internet I should have used it) and had I known then what I know now I seriously might have asked for some alternatives. This drug may be a miracle in the medical community, but for those of us who have to take it, its hell. Does anyone know how long it will take for the moon face, acne, and weight gain to go away?

Hi! I am a 36 year old female and have been on this HORRIBLE HORRIBLE drug (prednisone) for 2 1/2 years now..... Hopkins doctors still arent sure exactly what i have. My immune system is attacking my liver so to speak. My body is basically looking at my liver like it doesnt belong and is attacking it with large multiple lesions that is eating it away... the good thing is that it hasnt interupted the functioning of it yet but is leaving horrible scar tissue. I have been in and out of the hospital 13 times, have had just about every test imangable, 12 liver biopsies and they STILL have NO clue! They are leaning towards Church Straus desease and Wegners but the weird thing is i have half symptoms of both. The first year they had me on 80 mgs of prednisone a day which had seemed to put me in remission for about 4 months and then they came back even worse so i was put back on the prednisone, 80 mgs a day AGAIN along with 100 cc's of Methotrexate, another not so nice drug... i had EVERY SINGLE BAD SIDE EFFECT OF BOTH DRUGS!! This second time around was ALOT WORSE for some reason!!! My body DID NOT LIKE IT!! Nausea, hair loss, moon face, gained 40 pounds (and i was in great shape, worked out, i am 5'4 and was 110 pds!), EVERYTHING was swollen, legs, ankles, arms, neck, face, had the camel hump, fingers and especially my belly!!! UGH!!! Have bone, muscle, and SEVERE joint pain! Kaliedescope vision, dry eyes and then had mucus discharge (kindof like pinkeye), headaches, intestinal problems.... VERY CONSTIPATED and then the opposite!!! I literally felt as if i had turned into a man in my behind!!! Sorry to be so gross but thats how bad it was!!! Jaw problems, teeth and gums as well, skin sensitivity and have little bumps all over my skin (kindof like tiny little moles), itchy, broke out with acne and pretty much NEVER had more than 1 pimple a month, had facial hair (VERY DISGUSTING!!!! HAD IT WAXED EVERY WEEK!!!!) and then on top of all of that the swelling of my liver not to mention the PAIN! I was recently in the hospital again with 12 new lesions, pneumonia, and 104 fever. My doctors said the Methotrexate was the cause and i was having a bad reaction to it so they now have me on 100mgs per day of Azathiroprine. I am now finally down to a maintenance dose of 5 mgs of prednisone cause my body was starting to reject that as well. I thank god that i am now down to that dose!!!! It as only been 2 wks and the withdrawl symptoms are horrible worse then they were but i know what is to come =) loosing all this fluid and all of the HORRIBLE side effects i listed above. I will have to be on the maintenance dose of 5mgs the rest of my life and can live with that cause when my body gets back to somewhat normal i wont even notice that im on this CRAP!! I will be on the high dose of Azathiroprine for a few years and then on a maintenance dose of that as well for the rest of my life to keep whatever this is that i have under control.... the scary thing is is that they arent even sure that all of these meds will even work...... im a guinea pig..... The only thing that i am on out of all 25 pills/meds that i take everyday that works is my pain meds. Oh and i also forgot to mention that i had to be put on some "HEAD CASE" medication (thats what i call it =) ) for depression. Its a low dose but it does seem to help... I am terrified of what the future holds but continue to be strong and have an amazing support team... my fiance and family =) I dont even want to think about how i would be without them. I go back on the 25th of this month for my MRI so please who ever reads this keep me in your prayers as for all of you are in mine. I feel for each and everyone of you that has to endure this horrible drug everyday and i hope that everything works out you. =)

Sue =)

Was on Prednisone 2 years ago for respiratory problems 30mg. Gained 25 pounds, fat face, felt tired, etc.

However 2 years later, after weaning off Prednisone my muscles ache, joints are most always stiff, esp. hands plus my feet feel numb and my short term memory has not returned to normal----does any one else out there have similar problems. What can be done?

I had a kidney removed due to cancer and was told that it was removed in time before spreading. Now, after experiencing fatigue, it turns out I have some type of Addison's disease (low aldosterone). The doctor told me it may have been caused by the trauma of the surgery when they removed the adrenal gland from the top of the diseased kidney. I am now on Prednisone 180 mg for three days and then weaning off by day nine. I have a pounding heartbeat and can't seem to contain my tears. Has anyone else heard of this type of reaction following nephrectomy? Is this a high dose of Prednisone? I weigh 160lbs.
P

Hello- I was Dx with Sarcoidosis in February, 2007. My lung specialist put me on 20mg Prednisone, increasing to 40mg within two weeks. My Sarcoid symptoms were from enlarged lymph- extreme trouble breathing, middle and lower back pain, kidney pain. Within a week of being at the 40mg level my heart rate and BP became so erratic that he had to start weaning me down. Initially I had extreme energy which felt good after suffering from fatigue but was short lived due to the cardiac problems.

The Prednisone has resolved much of my inflammation for the Sarcoid but I will not go on this again. I have been weaning now for over three weeks. Down under 5mg of Prednisone and it is almost unbearable. Each time I took a drop my mental symptoms became intolerable. Anxiety, extreme fatigue with extreme weakness, irrational thoughts, blurred vision. Within the last couple of days I could hardly get myself out of bed. My weight has increased steadily, bloating stomach, stiff joints, skin rash.

My biggest complaint is that doctors are not giving us enough information as to how this will affect from a negative side. Yes, it takes care of the inflammation but no one prepared me for these awful side effects and withdrawal symptoms. I feel like a nut case most of the time with no coping skills.

I am a 59 yo Male diagnosed with MG Myasthenia Gravis). MG is an autoimmune disease affecting the muscles. At it's worst I couldn't keep my eyes open, my speech was constantly slurred, I had double vision, and I had a hard time walking because my hip muscle sometimes would give out. I was on 60 mg of prednisone/day for 4 months and am on the "weaning off" cycle (decreasing the every other day dosage by -10mg at 3 week intervals then by -10 on the other day when the cycle gets to 60mg/0mg). The side effects are as previously mentioned: The good: My arms are like steel! My MG symptoms are pretty much gone. The bad: My Blood Sugar is so eratic and I have to take diabetes drugs to combat that. I am taking fosimax to combat osteoporosis (just in case as my Dr. says). My feet have swollen up really bad, my hands are swollen, my legs weep from all the edima (water retention), and I have a voratious appetite! The Ugly: My face looks like an Orangutan, My weight sored at least 50 lbs, I am moody as hell but the longer that I am on this drug the more tolerable it seems (by other people's obversations). I am having a hard time walking. I had to have a BiPAP machine so I could sleep at night. My memory is erratic and I hate that part.

Hope this helps someone.

Just amazing how things react differently on different people.
I have been on Prednisone for almost 5 weeks now and have LOST weight. I eat because I am supposed to not because I want to, I am NOT hungry !!! I sleep like a baby too... go figure? However, I am weaning off it and am down to 5mg a day and I am experiencing headaches and leg pain which I did not have while on a higher dose (15mg). I love the stuff although I think I am in a minority of one in the world. I feel great when I am on it even though have used it in the past and developed cataracts from it at the age of 48 (now 49) and have already had one cataract removed.

This is about my sister who was diagnosed with dermatomyositis about 1 month ago. She has been on prednisone ever since and just a few days ago started experiencing really bad stomach pain and back pain/burning on the left side. we took her to the e.r. where they ran a number of tests and didn't find anything wrong. i have been researching all her meds and can only come up with this: prednisone has to be the culprit. God bless all of you who have to take this drug for anything. I wish you all the best. It has been hard seeing her suffer, but without it her condition would not get better.

I have taken Prednisone 3 times now in a 4 month perioed.
I started out with 90MG a day and then weaned off the drug only to be put back on it two more times due to COPD.
I developed red skin blotches and pimples which I thought was from the antibiotic Levaquin. This last time on Prednisone I was given Azithromycyin and still got the small pimples and red blotches so I can only guess that it is the Prednisone not the antibiotic. It goes away after weaning off the drug and and doesn't itch or anything. The prednisone does help me to breath so I guess it's a good trade off.

after a hospitalization for ulcerative colitis.. i have been on prednisone for a month, i'm weaning off but my i am so over my side effects.
my eyes are hidden in my new puffy cheeks..
i get hand cramps that look like lobster claws
i have a constant throat/cough issue
i gained ten pounds this month (which was needed but did it have to all go to my tummy?)
i can't sleep
cold sweats at night
i was on 60 mg, now on 20.
i'm real weepy and starting to get depressed.

After the second day of taking Prednisone I noticed a dramatic difference. I was not in pain anymore from the inflammation. I thought it was a miracle drug, but with-in a week I started to gain weight, even though I eat a very healthy diet. I have been on Prednisone for almost 5 months and I cannot believe the amount of weight I have gained. I am now weaning myself off of it due to Doctor's instructions, and am experiencing anxiety and depression and the pain is coming back, almost immediately. Although it helped me tremendously in the beginning, I would definitely try another remedy before I ever take Prednisone again. They call it the "nasty drug" for a reason.

My mother has severe COPD and is on prednisone to help her breathe a bit easier.

She was on 60 mgs a day for about two weeks and is weaning herself off. She always has the moon face, increased hunger, short temper and high glucose levels with this but this time there is a new side effect.

She recently started suffering dillusions. She didn't know she was in her own home, etc. She is currently in the hospital where they are weaning her off of the medication and keeping her sedated. The doctor attributes the dillusions to the prednisone. Has anyone had a similar side effect? I am hoping this is what is causing her dillusions. Thanks for your help.

Been on prednisone for over 6 mos...started at 60 mg a day for COPD's, major lung infections at times. Yes, it helped clear that up, but as mentioned by all of you, the side affects are about to ruin relationships with friends/family. I am supposed to start weaning down to 40, etc...for at least two weeks, then 30, and so on, till off completely, but so far, once I get down to the 30, the infections start back and I end up back up to 60. Weight gain, major hunger, major burning where they go in and where they go out...eyes watery/blurred vision. Personality has become very agressive and have lost two friends this week because of my outbursts. It's like I know what I am doing, yet can't control it. I have never been so depressed, and I am on Wellbutrin but doesn't seem to be helping. Steroids leave permanent enlargement of neck and the new look on face remains for the most part...I believe you call in moon face...I just look in a mirror and don't even recognize the person Ihave become.
age 57/f

I have been taking prednisone for about a month now due to an outbreak of ulcerative colitis. I started off on 50 mg per day and have been weaning off week by week going to 40, 30 and now am at 20mg. The side effects I've experienced so far are a weight gain of 10 pounds, increased appetite and thirst, excess sweating, mood swings, and worst of all fatness added to my face and hips. I would not recommend being relient on this drug but most likely like me, you have no choice. I am only 14 years old, but hopefully this will help someone.

I am 24 years old and have suffered from Irritable Bowel Disease for 22 years. I have taken prednisone 4 times in my life, but I always had to take high dosages for a very long period of time and then the weaning period lasted for months. In 2004 I had such a bad flare-up of Crohn's that I almost didn't make it. So I say Prednisone is my necessary EVIL.
I gained 40 pounds and was a MONSTER with my mood swings. The lasting side effects have been hard for me to handle.
The Prednisone cut off blood to some of my bones which now are dead and very painful as a result. I am having major knee surgery in a week and a half because of this (which is called Avascular Necrosis). I have AVN in both of my ankles, both knees, and most likely in both wrists. I will most likely need a Total Knee Replacement, but because I'm so young my doctors are trying every other type of treatment first (otherwise I would probably end up in a wheelchair by my 50s) I am in constant pain. I had never even heard of this as a side-effect until 2004 and after I was already on a high dose for a month.
I also have cataracts from taking steriods.
I feel MUCH older than I am. I have battled a disease for 22 years but the side effects of Prednisone are harder for me to deal with.
Although prednisone essentially saved my life, I wish I would have been more informed of ALL the possible side effects.

Against my wishes and not telling me the truth while I was in the hospital, a doctor was giving me steroids/prednisone. I began to lose weight and find it very frightening as I have never heard of anyone losing weight on prednisone. Everyone complains of weight gain. Even though I am now off the Prednisone I am having a difficultl time maintaining my weight. I just am unable to gain and too frightened to tell the doctor, afraid of what they may find. This weight loss started while on the Prednisone (shots, then pills). I cannot find anywhere where weight loss is a side effect. Has anyone else ever heard of this? I found a few references and they pertained to cancer, which is why I am frightened. I know I did not have this problem until I was given Prednisone.

I hate prednisone. I was given it in bursts for the last 10 years for asthma and for some reason I thought the Dr told me to stop at 10 mg and when I did my adrenal glands didn't kick in and I have been stuck on the stuff for the last 2 years since. I wean down to about 17 and then end up in the hosptial. this has happened multiple times. I was down at 17 a month ago and ended up in the er where they jacked me up to 40 and now I am at 23 but I am only able to wean at 1/4 a week at the most. I now am in menopause at 38 I have constant hot flashes rapid cycling mood swings. panic attacks. my heart races all the time I have cushings and possibly addisons now. I can't drive anymore my weight has gone up over 100 lbs my vision is constantly changing. I have pseudotumor cerebri and am now diabetic. This stuff is POISON> I also keep TONS OF FLUID ON face legs chest etc and now have to take lasix> I have tried to wean faster for the last 2 years but end up back up higher than before. I hate this drug. Don't let the Dr put you on it if you can avoid it. Also I would love to know if anyone knows of any type of inpatient facility to help with the weaning. My heart constantly skips and races on this stuff I am really afraid one day I will Die from being on prednisone. But I can't find a Dr to help me. This has ruined my life with my family if anyone can help please let me know

The first time I received the prednisone was in the hospital (3 pills @20 mg each. I felt different, something wasn't right. I kept telling the doctor this, but they didn't seen too concerned. During my time at home, I began to feel like there was another person inside my body. I have had some memory lost and felt like a zombie at times. I could actually feel my body move inside of me. I became quest depressive and dizzy with no desire to do anything but sleep. I have been weaning down, but there have been other side effects. There were several times when I wanted to stop taking the pills, but I was told not to because if I did this would create more problems. I did end up in ER room in the hospital for heart papitations. I now have a twitch in my left eye, I hope this will all clear up. Also, my bladder is quite more active these days. I can't wait until I stop taking these pills. I just pray that it hasn't affected any other organs in my body.

My brother has a nerve disease that affects his legs and feet.
Numbness and severe pain. He has alot of good days though.
As far as the withdrawl symptoms I've experienced are: insomnia, sadness (real bad), tempermental, hands swelling, sweating ( could not tolerate heat or humidity), blurry vision, extreme lack of self-esteem. My hands do not swell anymore, moodiness is better, still have insomnia, weight is coming off slowly and as I talked about before, my stomach problems have finally stopped. I was on pred. 4 yrs. So I feel like I'm doing alot better and so will your son. After reading all the posts when I first found this site, I didn't feel so strange and alone. Of course, everyone is different. Just know he will get rid of the withdrawl. My doctor had me quit cold turkey and that's why I feel I have had such a hard time. Weaning off of it is the right thing to do. I also had horrible headaches which have stopped. Take care.....Keep us posted on your son...........: )

Was put on Intravenious prednisone for a severe allergic reaction on June 12th. Was in the hospital for five days. dosage was 20mg twice a day. Been on that for three weeks. Now weaning off 10mg twice a day for 7 days, then 10mg once a day for 7days and 5 mg a day for 7 days. Side effects have been moon face, puffy eyes, bloated stomach, leg cramps, tingling legs ,arms and hands. Headache and neck pain.insomina. I look in the mirror and don't know the person I'm looking at. The medicine worked to stop the severe reaction I had , a rash the entire body, face neck etc. Throat closed up due to drug allergy to zocor. The side effects are terrible, it totally changes your body functions and after reading these post , It is scary to think the negative side effects it poses. I hope out there , they may be an alternative drug available with less side effects in the future for eveyone who needs this for whatever disease they have. I wish all of you the best and hope that your symptons will get better in time as you wean off .

Tomorrow should be my last day of prednisone until I start weaning off it, so I will take my last batch of 8 tablets in the morning 5mg each and then wean off them. I forgot to take them this morning, I swear by this afternoon I was REALLY DIZZY, until I remembered to take them and about an hour later I was fine, that kinda scares me, your body shouldn't get hooked so quickly. Anyway I am going to see my homeopath on Wednesday and swopping over to herbal medicine. I like to put natural things into my body thank you :)

Bronchitis has gone YAY! but just a bit of a wheeze.

On Tuesday this week I will have stopped smoking for 2 whole weeks!! Best decision I have ever made!!
Will never touch another cigarette ever again.

Have a wonderful week everyone and remember that u are not alone if you are struggling with Prednisone. HEY who knew I was a poet!!

I know this probably isn't "new"...started on 20 mg. daily after a severe asthma attack. Emergency room here had ALL my history. Doctor (?) should not have even given me this because I take Lamictal (an anti-convulsant) for bi-polar. I was never told about "weaning off" until I contacted an R.N. @ BC/BS of AL. I've had severe tremors, headaches, nausea, diarreha(sp?), black-tarry stool, buzzy-head, severe mood swings, blurred vision, swelling of all joints, sore throat, ear aches, very bad mouth sores, ravenous appetite, hot/cold flashes, dizziness, overall "where am I & what's going on" confusion, hysterical crying spells, racing heart, increased B/P...etc, etc, etc!! For me, there is NO good reason to take this demon drug!! I feel like I should be back in lock down and preparing for more ECT treatments. (Flashback from 6 yrs. ago) My prayers go out for anyone who takes this. From now on, I leave my asthma attacks to God and only God. Blessings to all.

Hi Everyone:
Thanks for all of your entries. I am comforted knowing that I am not alone in my side effects. I have been taking 20 mg of Prednisone for a very severe poison ivy inflammation. I put off taking it for two weeks, trying every other remedy I could find, but to no avail. The first few days of taking it I noticed immediately relief from the itching, BUT I also was not sleeping and I felt a euphoria. I was invincible. Then, I crashed. I have been hostile, weepy, anxious, unable to sleep more than four hours, and almost unbearable to live with. I cannot believe how powerful this drug is.

I have four days left, I will cut the dose down and start weaning off it since it makes sense to cut down slowly. Wow, I feel so badly for people who have to take this on a long term basis. Do you have any alternatives that you know of? I help people with chronic pain and would love to know what else works.

Thanks everyone!

I was diagnosed with Myasthenia Gravis in my 1st month of pregnancy..I did IVF to get pregnant and the IVF drugs brought me to a "crisis" situation. I've been on a high dose of Prednizone for almost a year now, as high as 200mg daily, now weaning off and down to 40mg every other day. I have all of the terrible side effects from this drug and assumed that I would feel better after having the baby, however some of the side effects have gotten worse! I have a huge, puffy face, gained a ton of weight, acne, severe mood swings. I can't wait to get off this drug. I know that it has saved my life and my beautiful baby's, so I try to remind myself of that when I get sad. How long will it take to go back to "normal" once I am off the Prednizone?

My mother had a COPD exaberation and hospitalized twice last month. Was on a 10 day regimine twice in a month starting at 60 mg. per day and weaning off.
She is 77 and now is nervous, has crying spells, not steady on her feet, cannot concentrate on her favorite tv shows or read. She is agitated, thinks we need to pay more attention to her and thinks my 78 year old father is mistreating her at times. At first we thought it was damage to her brain from oxygen deprivation when sick but since researching Prednisone it must be the culprit.
When will the end and could this be from taking this for 20 days?
I wanted to post this experience and any comments or advise please.

I am 54 and have recently been diagnosed with a lung disorder known as Boop as well as hemolytic anemia both of which require massive doses of steroids. I started out on 100mm for ten days, IV. and went home on 80 two weeks later. I am now onn 50 daily and weaning off 1omm at a time to see how I am doingl. Both illnesses are life threatening if not treated so I really don't have much choice. I may even need chemo for the blood disorder as well.
I have the same miserable side effects you all mentioned. The moon face is like looking in the mirror at a monster I don't recognize. My mood swings are awful, I get so angry at my husband and son as they just don't understand what it feels like. All the aches, the insomnia, the weight, bloat and pains in back and side. I know that I have to be on this for a minimum of 6 months manybe more and I can't stand looking and feeling like this. I already had a weight problem because of meds I am still on from when I had Breast Cancer five years ago and they put weight on as well. (I used to be a size 5 and now I can't even look and see what size I wear. Of course I guess it is better to be alive and fat then dead and thin, but sometimes I don't feel that way. Why can't they find a drug that can work withougt all these other side effects.