PredniSONE and fatigue

OMG...I can't stand it anymore!! My legs are killing me!!...I am almost weaned off of it...tomorrow I take one 10 mg pill....and then the next day, I take 5 mg....and I'm done. Thank God!! I pray that I have no bad side effects from weaning off of it. I worry that I won't be able to breath again. Then what??...I will not take prednisone ever again!!...I think I would rather die then live on this horrible drug....If only I knew what it was before I started taking it.

I started in November 40 mg a day for sarciod this has not been a pleasant experience. I was doing great with the weaing process until this past week. I started headaches throughout the day. The fatigue came back from before not being will rested or could sleep all night and get tired in the middle of the day. I think that is the worst is the diarrhea that comes with this. Nobody tells you about these things are going to happen to in the process. I am glad that i looked at this site because I was headed for the doctor tomorrow because I thought I had a virus or something. I am experiencing pains in my chest now so I really don't know iF i should continue to get off them or not.

I am being treated for ulcertive colitis. I have been on prednisone since Sept of 08. I started out on 40 mg. In late Oct. my doctor started tapering me off 5mg per month. Each month following the tapering date, I would get sick. As I look back, all the signs of withdrawal were there. This Jan. I tapered once again, but the window was only 3 weeks. I hit rock bottom. If there was a symptom, I have it. Nausea, burning in my digestive tract, diarrhea every time I eat, muscle ache, numbness in my legs, swollen feet, sore bones and joints. ( The worst was in my feet. I ended up seeing a podiatrist. He thought plantar faciaitis until I told him about being on prednisone. The small bones in my foot were swelling, The muscles in my calf were buning they were so sore. That was last week. Today my other foot started. I can hardly walk. In addition to that, I am lightheaded, have elevated blood pressure, and fatigue. I also had some vision problems that sent me to the doctor. I went through a ton of testing which all were negative. It seems that pseudotumor is another symptom of withdrawal. I have a history of that. It would have been nice to know that. As I look back each month, I had different muscle and joint pain that lasted about a week. I was put on an acid reducer in Dec. to help my stomach, but in all of this time, I was not told that these all may be withdrawal symptoms. I have been off work for two weeks now in addition to the days I missed each month. My physician is now controlling the tapering procedure. They up the dose to 10 mg again. They plan on weaning me by 1mg doses. This has been a terrible experience for me. I have only been severely sick one other time in my life. This pain is awful. It is chronic. This drug may be beneficial, but it is like poison too. Anyone who takes this should really ask a lot of questions, and be careful..

I am recently out of the hosp after 9 days with COPD exas, pneumonia, flu. I have been on heavy antibiotics, steroids--home now for 1st time with oxygen---I feel GREAT.First time in years I feel like I have a life to live. Like a veil has been lifted. I'm scared for this feeling to go away--what is it? the steroids?? the oxygen?? Whatever it is I need to know so I can fight for it and stop just waiting to die.

I was on prednisone while getting over pneumonia to help with my breathing. I was only on it for 7 days and the doctor didn't have me go off of it gradually. I missed the last dose on the 7th day and by bedtime, my muscles were sore enough it almost hurt to lay down. I took the last pill that night before I went to bed and had no muscle soreness in the morning. After that, the muscle soreness came back, along with dizziness. My pulse was also higher than normal. Two days later at night, I was still having muscle soreness and dizziness, although not nearly as but, but I was having a lot of trouble breathing and my pulse would refuse to go below 100 no matter what I did and the problems continued thought the night. The next morning I went to the clinic that prescribed me the predisone because the information they gave me said to see a doctor if these problems persisted. I told them I thought I might be having a predisone withdrawal because my mother, a nurse, said it was the most likely problem from experience. They completely ignored that saying it had been several days since I've stopped the steroid and kept asking me about my asthma (inhalers weren't working and it was definitely not an asthma attack -- I've had plenty of those, to all different degrees) and ended up giving me medicine for anxiety, which helped the closing of my throat, but none of my other symptoms. Three days later, my resting pulse is down to 80, but my breathing is so much worse than it would be with just my normal asthma and taking my inhalers as much as is allowed. I had no noticeable symptoms when I was on the prednisone except being less able to sleep. If it keeps up, I intend to go to a different doctor to see what is really happening, but I don't think it's 'normal' to have the withdrawal symptoms for this long after only having it for 7 days. I know I took it when I was younger (I'm 22), but I don't remember ever having issues going off of it before.

I was prescribed prednisone (prednisone burst) for my endolymphatic hydrops (inner ear disorder). My initial dose was 80 mg for 4 days and then tapered down over the next 2 weeks. I took my last 5 mg today. I to have experienced the mood swings, along with extra energy, anxiety, fatigue, stiff neck muscles, sore leg muscles, weak leg muscles, nausea, sweaty palms and feet. I decided to go on prednisone after my doctor said it would help rule out autoimmune disease. I will never go on this drug again unless it is life threatening situation. It is a very nasty drug and my family has had to live with me during this difficult time. I'm leaving my condition up to the Great Physician!

My husband initially took Prednisone after getting strange lesions, severe joint pain, severe fatigue and severe stomach cramps/nausea. It worked great he was tapered off and no problems for about 18 months. Then he go sick again (2/08) and has been up and down on Prednisone for 7 months- currently taking 60 mg. daily. Some doctors think he has Wegener's, but testing is inconclusive (Wegener's starts with upper respiratory stuff, which he also had). His mood swings are severe and he's a different person, twitching, hand trembling, muscle spams, malaise, anxiety/depression, very fatigued, insomnia, severe stomach cramps/vomiting. How do you tell which symptoms are the Prednisone and which are the disease process? They want to taper him to make him sick enough to get some test results that show organ damage or something, but everyone chickens out and he ends up getting increased. How long should he be on Prednisone and not be put on something stronger?

I have been on prednisone since November 2007 for minimal change disease, 65 mg, in May I started to decrease the dosage (per Drs. orders) and by the time I got to 15 mg all my symptoms came back and I swelled up again. I was again put on a higher dosage of prednisone and put on Cytoxan 75 mg. I am now decreasing prednisone, back to 15 mg every other day and will be off Cytoxan next month. Hopefully this will work. Right now my main complaint of side effects is chest pressure, anything I eat or drink makes my stomach swell and I feel like I can never take a full breath. I recently had chest and abdoman xrays and an ultrasound, all negative. Does anyone have this symptom? I also have moon face, weight gain, hump on back, insomnia, headaches, digestive problems ,shakes, night sweats, vision problems, extreme tiredness and hair loss. How long before all this goes away?

I agree, for me this is a horrible drug! This is the 2nd time my allergist prescribed it to me (last time was this past summer and I had severe panic attacks and thought I was losing my mind) this resulted in me returning back to my GP and him putting me back on Paxil (which I had been off of for a year). I was extremely reluctant to use this again but thought i might be able to manage it this time (with the help of Paxil).

My allergist prescribed Prednisone to me 2 weeks ago (5mg 3x's day for 3 days then, 2 2x's day then 1 for 5 days) I made up until the last 3 pills. I had severe brain fog and felt like I was floating through space. I couldn't even remember driving to work and parking my car! Extremely fatigued (I have diabetes (which is under control, but I had to keep checking my bg because I thought my sugar was dropping to low). Now, within the last week of taking the Prednisone I have experienced aching in my kidneys and I think I have a kidney infection.

Can Prednisone do this to you??

I am calling the doctor tomorrow. Today is the first day without Prednisone and I feel like I am totally out of it - really spaced out, dizzy, panicky and a bit nausea.

How long does it take for you to get Prednisone out of your system?

Hello -- I was diagnosed with Minimal Change Disease and have been on Prednisone for about 2 months at 80mg. The first couple of weeks I was full of energy and since I was bloated up to 212lbs because of my kidney disorder...I quickly came down to about 170lbs in about 3-4 weeks. But the fourth week the side effects really became noticeable. I went through extreme moods swings and the weight slowly started returning. So I decided to hit the gym to battle the nervousness, anxiousness, swelling and fatigue. To start it truly works to drink a lot of water. I still battle with the mood swings, but this is a great start and I work out about 4-5 times a week and make frequent visits to the steam room. You have to also me careful to not get exposed to germs, so bring handy wipes with you since the Prednisone weakens your immune system. Next week the doctor will take me down to about 40mg. I guess the mood swings are really still the hardest to deal with and for the people who love me the most.

I started with 60 mg per day for polymyalgia rheumatica and now after two years have weaned myself down to 5 mg per day. I have a side effect that I have not read anyone else having. It has effected my taste buds. Many foods that I loved in the past, have a foreign taste to me. I am 66, male and have tried to drop down to 2 1/2 mg but the pain is too intense to remain at that level, so had to return to 5 mg. I have lots of pain in the feet and especially toes. I can tell that I am getting better and am very anxious to get off of Prednisone.

had 12 days of prednisone for poison ivy starting out on 60 mg tapering down posion ivy started to spread again and was started on hexadrol x13 days have moon face shortness of breath changes in ekg did echo and chemical indused treadmill every thing good that way but i feel like i am losing what little mind i have left am a home health nurse and some times even with directions am fuzzy headed and also blew migraines into full force after finishin doseage severe joint pains fatigue very moody irritable and you know the rest never full when will this get out of my system can any one help also peri menopasal been married only 8months he is a saint

I am a 22 year old female, 5'4'' and 120 lbs. I was recently diagnosed with asthma and was put on Prednisone for 4 days - 60mgs, then 40 mgs. I experienced blurred vision, mood swings (nervousness, depression), headaches, fatigue, and nausea. The day after I stopped I got a very sore neck and shoulders, and was so tired I didn't want to get out of bed. I now feel pretty much back to normal, but the whole experience was very scary while I was going through it because no one really warned me about these effects. I would burst out crying suddenly, and the vision thing was scary because you feel like it will never get better. I felt so unlike myself that I stayed in bed pretty much all four days I was on it and the day after I stopped. I hope I never have to take it again, and I am sorry for those who must take this drug long term. On the positive side, it does seem to have helped my asthma symptoms, although some of them returned after I stopped the medication.

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

I've had ulcerative colitis for about 12 years now and I have been on prednisone at least twice a year since. I've kind of gotten used to the feeling when I am on the drug and just deal with it. It is hard with the blurred vision, fatigue, sweating at night, and trying not to yell at my kids but I think I get by pretty good. I am currently on 60mg now and have been for about a month, I think the older I get the worse it is trying to deal with the side effects. I am experiencing all the side effects everyone has talked about and can wait until I start tappering off. Working out helps when I feel up to it. It's also hard trying to get my family to understand what I am going through.

In January I was diagnosed with polymyalgia rheumatica and temporal arteritis (giant cell arteritis). I was put on 60 mg prednisone and an array of other meds to help with pain, inflammation, water retention, and stomach problems from everything. I've lost some vision from the TA. I've experienced the weight gain, the moon face, stomach problems, depression, fatigue, muscle weakness, lack of memory and concentration, and generally feel miserable. The brain fog is awful! I don't trust myself doing much of anything these days!

When I was first put on the prednisone it completely took away all my TA and PMR symptoms. I could walk and get up and down again, didn't have the headaches, and didn't hurt all over.
My doctor tried to taper my dosage about 6 weeks ago and all my symptoms returned and increased as I went down on the prednisone. He upped me back to 60. That time the symptoms didn't go away. They lessened but were still there.

He's trying to taper again, and I'm down to 30 mg now and feel worse and worse. My sed rate has been normal, so the doctor thinks it's from the prednisone. Does it mimic all the TA and PMR symptoms? I also am having a lot of hand and feet cramping.

Does anyone else have these two illnesses? I would be interested in your experience. I want off these meds! Anyone found an alternative approach that's helped?

God bless!

I was diagnosed with Systemic Lupus in 2001 and have been on Prednisone since then! I started on 60 mg and am now going off of the drug.

I gained about 60 pounds, I have a classic moon face, buffalo hum (on neck), and the bloaty belly--and I hardly eat. I went from being in shape and running three miles a day to barely being able to get off the couch! Here are some of my other side effects;

*sleep issues
*gum/teeth are more frail
* severe eye problems (blurred vision, loss of peripheral vision, depth perception problems)
* excessive hair in places I don't want and hair loss in the places I want to keep it on!
* mood swings
* inability to concentrate for long periods of time
excessive fatigue

My advice on this drug--if you can--avoid it. If not--be proactive in getting your doctor to get you off of it as soon as possible at a slow rate.

I am now on 5 mg being tapered off permanently! Thank God!

I am a an active, healthy 42 yr old female who was taking 60mg every day for 5 days. Medicine was prescribed to me by my doctor to help with the pain from an injury that aggravated back surgery that I had in January. I am done with the medication but am feeling flu symptons (i.e. sensitive skin, achey joints, spinning sensation, general fatigue). Is this normal? My appetite has tripled! Whats up? This medicine is awful! Just say no!
Jennifer

i have been on 60 mg for 3 months and before that 20 mg since sept 05.. i have moon face, swollen tummy stretch marks all over my body, horrible heart burn, rapid heart beat, night sweats, insomnia, crazy hunger pains but cant seem to eat, mood swings, depression, fatigue, weak muscles, shaky, severe hot flashes, flushed face and i constantly feel sick to my tummy... you name it i got.. this drug is horrible, cant wait to be off which seems like an eternity :( and the worst is yet to come because i hear that your body becomes addicted to it and the side effects off being weaned off are just terrible and you end up being kept on just to flush out your system

I'm taking this for bells palsy. I guess this is rare, but my major side effect is ABSOLUTE fatigue! Has anyone else encountered this? I know it's supposed to give you the jitters, but it does the opposite for me. I've been on 60mg/day for four days, and I've tried taking them together, or spacing them apart (w/ the ok of my doc) but the formula is basically the same -- for every 20 mg pill I am PASSED OUT for at least an hour, so for multiple doses it's hours at a time. And not a nice sleep either. When I wake up I have moments of feeling ok but the fatigue always comes back. This is crazy! Also, I've lost my appetite, not gained any. (Although that might be the result of anti-viral medicine from shingles I'm just finishing...)

I can't wait to be tapered off this drug!

I was prescribed Prednisone for 10 days initially and then degreasing dosage for a long time. 9mg daily for 14 days, then 8mg for 14 days, then 7mg for 14 days and so on until I was off the stuff. This seems to be a long time for me. I have night sweats, insomnia, fatigue, lack of concentration, and lack of ambition. I am a 70 year old male prostate cancer survivor. I am also taking Toprol 50mg daily.
Will all of the side effects go away eventually?
Very tired old man.

I have been taking Prednisoner about 2-3 times per year for my allergies and asthma for the past 3 years. Usually I gain a few pounds and have insomnia for a day or two. This time is out of control. I stopped taking it almost three weeks ago and I still have insomnia, neck stiffness, fatigue, a low grade fever, nausea and a sensitivity so strong to heat that I have a panic attack every time I get hot or go outside. My doctor has no idea what to do. He said it will go out of my system eventually. Suggested lots of water and a detox diet of brown rice, beans and veggies - no refined flour, sugar or caffeine. Anyone having anything similar? Xanax doesn't work for me. I've been taking Benadryl to sleep.

Well you might not want to give me permission to complain. I hate to complain in front of family They suport me so much so I write complaints in a book but to find some answers is nice to my questions I ask myself.I have a question for you Gypsi. The Diurex will it work while still on prednisone. You all have made me deside to give up my addiction to Dr.Pepper for water. I am filling my bottle with water three whole days now. So here I go lets see if I can lose one or two pounds. I eat a very well balanced diet otherwise. So let see if I give up my one crutch if I can see some of this weight gone. Does anyone eles suffer from fatigue but have insomnia. My husband is going to go in for a angiogram Monday so I will not get back for answers until later in the week because I also have to go to the city for a MRI. They both can not be in the same city so I will be gone until thursday. I am going to buy the Diurex I am not even sure what it is but if it will work with out interferance to other drugs I will take it, thank you for encouragement.
Angela

Thank you all for all your posts. They help me feel like I am not alone in all this junk. I have been on Prednisone since mid July when I was diagnosed with Dermatomyositis. Even with all the side effects, primarily the weight gain and bloating, I feel better than I did in June. I could hardly walk. My sleeping is actually better now than it was with the pain of DM, and I have always been hypoglycemic so the elevation in blood sugar has helped me.

With that said, I have always been an extremely healthy and active person so the weight gain is killing me. I also prefer to be holistic. My biggest fear has always been long term medication, but here I am. My pred. level was just increased 2 weeks ago to 60mg / day. Within one week my face has become very round, and I look 4 months pregnant. I am very hopeful that someone will find that miracle diet/exercise regime to help balance this side effect. I work out at least 6 days per week. I eat healthy, but have recently gone back to a yeast & sugar free diet. All this with no success. I just started taking Methotrexate 2 weeks ago so I hope maybe it will give me the success Liz has seen in that area.

Other side effects: I am very happy to have my energy level back, but my strength isn't back so I get very frustrated and irritable. I have issues with blurred vision. And I have trouble concentrating. My thoughts often wonder while I am in conversation.

I hold you all in my prayers and hope that you will find ease as you go through this challenge. If we can all stay positive we'll get through it.

Best Wishes,
Elizabeth

To guest 12068
I'm so very sorry u r going thru this. That is way too long to be on pred. Is there any way your fiance' can go thru therapy with u? No one understands this demon drug and we r not ever told of the long term dangers of taking this. It will be 1 yr. or longer to be rid of the side effects from being on it for 4 yrs. I understand the anger problem. Mine lasts about 10 minutes then I get really quiet and then I'm ok. My husband is great about it. He just says calm down and waits it out with me and then I feel stupid and everything is ok again.(until the next time) It comes on so fast and leaves just as fast. I'm trying to talk to myself before I let anyone else see my mood. Sometimes I just walk away and settle down and then I'll be ok. I've got two wonderful friends who know what is going on and they understand and hug me when I get like that. I still have insomnia. I've been off of pred. for 6 weeks. Fatigue happens real sudden like rigor mortis is coming on. Ha It does feel weird. U r in my prayers even if we don't the names on this website. It will get better. Since u have been on this so long hang in there with the therapy and keep us all posted and ask all of us anything u want. Thant's why we r here. U don't know until u go thru prednisone hell. : )

It's scary in here...lol..Mixed Connective Tissue Disease, Primary Biliary Cirrhosis,Pulmonary Fibrosis, Sjogrens. Yes, it makes you feel better, especially at the beginning when the side effects aren't there. But MAN, does any body else feel like SCREAMING? LOL. I look like an entirely different person. Been on it for one year. Not even a large dose. My weight has just kept on coming. I think there is an alian in my stomach. And I think someone has inflated my upper body with something. Swollen, bloated,uncomfortable, fatigue, weakness, etc,. Do you eat like it's your last meal on earth sometimes????? Like some primative instinct separate from common sense. Some days I feel like it's the end of the world. But we'll make it. All of us.

Mood swings, upset stomach, WEIGHT GAIN (50+LBS!!), forgetfullness, paranoia,hallucinations, feeling invincible, muscle weakness, high blood sugar, high blood pressure, thin skin, fatigue, not caring about anything, talking a lot, feeling hot all the time, excessive sweating resulting in body odor, not liking things that fly( I was especially freaked out by bugs and birds) lack of tactfullness, I'll add more when I think of them.... and heres the clincher......

one day when I was driving on the highway, I was suddenly convinced my car's engine was on fire.

Amazing stuff at this site. I have rheumatoid arthritis and am taking Pred, which acted like a miracle, stopping my excruciating joint pains and enormous fatigue. But even at the low dose of 5mg, I had frightening mood changes, irritibility, suicidal thoughts, reclusiveness, wanting to hide, and difficulty with abstract thinking. I reduced to 4mg, then to 3mg and suddenly I have returned to normal. I have much more energy, and the mental/emotional symptoms have gone. Prednisone is very powerful drug, but one that should be used with extreme care. My MD did try to bring down the dose as much as possible. My impression is that many MDs are prescribing much too much.

I was diagnosed with Polymyalgia 6 months ago. Started out with 10mg of prednisone and increased to 20mg. After 6 months I am down to 5mg more a result of fear of predisone effects than relief from pain and stiffness. My negatives have been 35 lb weight gain, difficulty sleeping for long periods of time, fatigue and just recently an unsatisfactory elevation in blood pressure. I am willing to "put-up" with discomfort and pain rather than take predisone. Anyone with PMR that has found alternative treatments to predisone please contact me. Would also like to interact with others who have PMR. thanks,

I was diagnosed with Crohns about 2 days after my 21st birthday, in April 2003. I was put on 40 mg of prednisone and was to stay on it for a few months, slowly weening off, lowering the doses weekly. Side effects weren't that bad then, only a slight weight gain, which wasnt that bad since i lost about 30 lbs before i went to the hospital, so 10 lbs or so wasn't a big deal. What I noticed later, maybe 6 months of not taking the meds, was that I now had serious depression, mood swings, fatigue, face, back and chest acne, and chest and facial hair! I can deal with the depression but no female should have chest hair! Anyway i realize the meds helped heal me but in the process they've really done a number on my self esteem!

I experience insomnia, fatigue, snoring due to increased neck fat, moon face, painful abdominal bloating, 10 lb weight gain, increasing blurred vision, purple rash on stomach, thin skin and easy brusing,hair loss, facial hair growth, night and day sweating. I started to decrease prednisone 2 1/2 mgs. per week alternate days in early December. Everything was going well and I could see slow improvement in my condition until mid February. Since then I have had more weakness in my hands, arms legs, and increased blurred vision. Since I may have to be on a low? dose of prednisone for a long time I have some questions.
1. How low a dose is necessary for side effects to diminish?
2. Does all your hair fall out to necessitate a wig? When does it start to grow back.
3. Does the weight go back to normal without dieting? Does your shape go back to pre prednisone?
4. Will the weakness, control, and pre prednisone vision come back to allow normal functioning?