Patient Comments: Steroid Drug Withdrawal - Symptoms


What symptoms did you experience with steroid drug withdrawal? Submit Your Comment

Comment from: Freckles2, 55-64 Female (Patient) Published: December 07

I have been on prednisolone for 3 years and have been told I need to stop and perhaps be prescribed an alternative therapy for my Autoimmune condition. The steroid drug withdrawal has not been easy at all. I have been switched to hydrocortisone to hopefully make the withdrawal less bothersome. That said, I have never felt so unwell. The fatigue is indescribable. I feel as if I am walking through treacle and someone has pulled the plug. I have headache, tinnitus, dizziness and gastric symptoms to name a few. Joyous!

Comment from: Suin, 55-64 Female (Patient) Published: November 30

I was on prednisolone for 3 years for PMR (polymyalgia rheumatica), which it turns out I didn’t have! I am off the steroids for over a year now and I still feel horrible. I am constantly tired, have night sweats and breast pain. It gets me down to feel so bad for so long.

Comment from: Oscar, 45-54 Male (Patient) Published: November 17

I took Medrol dose pack 4 mg for 7 days. On the 6th, I started to feel pain in my ankles, groin and hips. Two weeks later and my legs are killing me, all this for herniated disc on L4-L5.

Comment from: ftprnts114, 55-64 Female (Patient) Published: November 12

I am on a prednisone taper right now. I've been on prednisone for over a year, closer to two. Right now I'm at 20 and 15 mg alternating. I take this for an autoimmune lung condition. Since being on this I have moon face, my teeth are falling out, I've developed type II diabetes and a bone condition similar to osteoporosis. Right now I feel miserable and my taper will last until May of 2022. Just thought I'd share my experience with long term prednisone use and steroid drug withdrawal. Thanks for letting me share.

Comment from: Ann, 65-74 Female (Patient) Published: August 27

I was prescribed prednisone for an outbreak of rashes. I took 50 mg the first day (10 mg spaced apart). I got so sick from steroid drug withdrawal that evening I could barely move. I did not take any more! Two weeks later I have aches, still itch, but rashes are gone, though no appetite.

Comment from: di, 65-74 Female (Patient) Published: October 27

In the past I have tapered off prednisone and noticed no problems. But today, I cannot remember if I took my 40 mg prednisone when I woke up, or not. Now I don’t know if I will have adrenal problems if missed and don’t think I should take the 40 mg now in case I already did!

Comment from: Lolo, 65-74 Female (Patient) Published: August 03

I have been on prednisone for 6 years, for giant cell arteritis (GCA). This year, I started tapering off very slow. The last was 3 mg and I tapered to 1 mg. A month I finished on June 15th, but I started having joint pain around June 1st, and by June 15th, the pain was excruciating and continues today.

Comment from: Trish, 75 or over Female (Patient) Published: April 16

I have steroid drug withdrawal symptoms from the use of prednisolone for polymyalgia rheumatica (PMR). Trying to reduce steroid it is horrendous, I am suffering fatigue, moon face, shortness of breath and weeping eyes. I am a wreck and would prefer not to have had them.

Comment from: Jim, 75 or over Male (Patient) Published: March 23

This is 20th March, 2021 and I have been on steroids for almost 21 months as part of my cancer treatment. I tapered off and have been 3 weeks without steroids and have felt extremely poorly ever since. My legs are swollen. I have extreme fatigue, watery eyes and congestion. I have never felt so ill. The steroids were necessary as my treatment was severe. If they hadn't been an integral part of the treatment I needed, I would definitely have refused them.

Comment from: Ostig , 55-64 Female (Patient) Published: March 05

I have been on steroids since I was 9 and permanently for acute asthma since I was 20 (I am 63). I was in ICU with asthma twice in 2019 where I was given 100 mg daily. I am on a successful course of biologics and have reduced my steroid level to 5 mg a day but the withdrawal effects are awful; joint pain, depression, fatigue, etc. They are going to give Synacthen to boost my adrenal glands. I am not feeling hopeful for success, I think they are completely flaccid by now.

Comment from: glyn c, 65-74 Male (Caregiver) Published: February 19

Ever since I came off Trimbow, an inhaled steroid for COPD, my right leg hurts when trying to walk.


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Comment from: Viceversa, 55-64 Male (Patient) Published: January 07

I used Prednol tablets for 6 months for myasthenia gravis anti-MuSK type. I started with 60 mg dose gradually decreasing to 4 mg. I am now out of Prednol for 8 weeks. I have terrible joint, muscle and bone pain, severe fatigue and stiffness from steroid drug withdrawal. I also started to have memory loss. But I am not sure if memory loss is related to Prednol.

Comment from: JoanEngland, 55-64 Female (Patient) Published: December 22

I was taking prednisolone since January 2020 at 60 mg and began tapered withdrawal in June 2020, but it was very slow going, as after every 2-3 steps, after dropping 2.5 mg each time, I had a bad resurgence of symptoms. I had to go back onto a higher dose, so it was like two steps forwards and one step back. But eventually in November 2020 I got down to 25 mg; however, now I am having full blown withdrawal syndrome, with all of the symptoms others have described, including severe hot flushes/flashes.

Comment from: Kelly, 55-64 (Patient) Published: June 16

I was on immunotherapy for melanoma. The immunotherapy attacked my lungs and I was put on very high doses of prednisone for about a year. When I started to wean off the prednisone they changed me to Covocort which I have been trying to wean off for the last year. The steroid withdrawal symptoms are absolutely terrible; from the muscle and joint pains, muscle jerking, palpitations, chronic fatigue and general feeling of being unwell. This has been harder than the cancer treatment.

Comment from: Rupert, 65-74 Male (Patient) Published: April 27

My symptoms of steroid drug withdrawal are fluid retention in feet and lower legs, abdominal discomfort, nausea, loss of appetite, and excessive sweating on moderate exertion. I have weakness but have kept fairly active. I had prednisolone on three occasions for asthma, more than in previous years.

Comment from: MH, 55-64 Female (Patient) Published: March 03

I was on IV steroids for eight days, then two days of ten oral doses. All of a sudden they were stopped, no tapering off. Since I came home from hospital I am suffering from fatigue, vomiting, headache and weakness. Wonder if this is a result of fast steroid drug withdrawal.

Comment from: Angie T of Colorado, 35-44 Female (Patient) Published: December 10

I was on steroids for trigger finger for 10 days, and then tapered off. Four days off now, I am still getting chills and sweats from steroid drug withdrawal. Felt like I was getting a bad cold/flu at first. I am extremely tired, with lack of sleep, muscle cramping, huge bags under my eyes and water retention. Breathing is shallow and it is hard to breathe. I’m a pretty healthy female and this took me for a ride. I’d much rather get a shot next time in the area of need. The symptoms on and off this drug are truly ugly and torturous. Too bad.

Comment from: Kellie , 45-54 Female (Patient) Published: November 19

I’ve been on prednisone for 5 years. I’m down to 2 mg. The fatigue, muscle aches, joint pain and bone aching are unbearable. I get the sweats and chills and I feel absolutely pushed to the limit of my pain. It’s unbearable. I don’t know when I will get to zero and I hope with all my heart the steroid drug withdrawal symptoms go away quickly. I feel like I’m 90 years old. My legs are aching so badly it hurts to walk or get out of a chair and my arms are aching like crazy too. When I get up my fingers are aching and won’t work.

Comment from: MuchachaMala, 25-34 Female (Patient) Published: November 13

With steroid drug withdrawal I have developed chronic joint pain, extreme nausea, severe depression, diarrhea, weakness, high blood pressure, irregular heartbeat, dizziness, and shaking.

Comment from: Hope007, 45-54 Female (Patient) Published: November 06

Six years ago I developed strange allergies after I was given the wrong vaccine. I was given a shot of long acting solumedrol. This was the first time I was on steroids. It did not heal the allergy, just temporarily suppressed it. The side effects I described as going to hell and back. Severe depression, muscle and ligament coiling, throbbing joint pain deep in the bone, anxiety, insomnia, irregular menses, heavy menses, severe PMS (premenstrual syndrome}, increased appetite and weight gain. Also severe headaches.

Comment from: JediJulz, 45-54 Female (Patient) Published: October 24

I am a 23 year old female university student, otherwise healthy. My mononucleosis started with intense fatigue where I could barely get out of bed, then a horrible migraine which lasted 10 days, and fevers every day for 8 days. I went to the hospital when I became so bloated that I could not eat or drink. My spleen and liver were found to be enlarged, and they found EBV (Epstein-Barr virus) in my blood tests and diagnosed me with mono. My throat and tonsils are in so much pain that I cannot eat. Swallowing hurts. I need painkiller.


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Comment from: Melliepeaz, 55-64 Female (Patient) Published: October 08

Severe muscle and joint pain and stiffness, inflammation, and extreme fatigue were my symptoms of steroid drug withdrawal.

Comment from: Cushing's survivor, 35-44 Female (Patient) Published: September 26

I was re-diagnosed with Cushing's disease nearly 2 years ago (3rd time round). Both my adrenal glands were removed nearly 3 months ago. I initially started off with 30 mg Covocort as a cortisol replacement and have tapered down the steroid to 20 mg. I now get cold very quickly, have severe joint and muscle pain on a daily basis (worsens from 4 pm). I also experience muscle jerks, mostly in the legs when I'm inactive for more than 10 minutes and have heart palpitations on a regular basis. Soaking in warm water helps.

Comment from: Donnagirl, 55-64 Female (Patient) Published: September 11

Prednisone is a very scary steroid drug, I have been trying to wean off for months. Well, tonight I had no choice but to go back to my original dose. The pain is unbearable, I can’t walk and this is not from my rheumatoid arthritis, it's from the withdrawal of the prednisone. The pain from my right thigh, knee, and groin area have been just horrible. It feels like someone is pulling all my muscles and stretching them. I wouldn't wish it on the devil himself.

Comment from: 35-44 Male (Patient) Published: September 06

I have an autoimmune disease and I was on prednisone for years (on and off). I have never experienced withdrawal before but for the last week. I have been on 5 mg for almost a year and stopped last week. I felt like everything was dead inside my body. I felt extreme pain in my stomach and my head was like exploding. Nausea and joint pain was constant. My doctor told me to take a test with 20 mg of prednisone and all pain was gone. It seems my glands can’t produce cortisol themselves anymore.

Comment from: Nell c, 45-54 Female (Patient) Published: August 27

My doctor gave me 80 mg of Deltasone (prednisone) then slowly tapered down to 10 mg but when I had bad side effects I went back to 20 mg and side effects are gone. But then eventually I need to get out on it, it is just that I can’t take the side effects. It is 2 days now but the steroid withdrawal effects are so bad, worse than what it is supposed to be curing. All my joints hurt, even my jaw and tooth hurt. No more steroids anymore.

Comment from: OnlyD, 65-74 Female (Patient) Published: June 04

I was on prednisone for 10 days to clear up a case of contact dermatitis. I tapered off over 10 days from 50 mg to 10 mg on last day. Side effects were anxiety with heart palpitations, and restlessness so I could not sleep. So I took the pills earlier in the morning so I could sleep at night. I had loss of taste and mind fog. I've been off almost 2 weeks and still experiencing some anxiety and intermittent palpitations from steroid drug withdrawal. I will never take this drug again. I have been blessed with good health, but this drug wreaks havoc.

Comment from: Samant, 25-34 Female (Patient) Published: May 30

My back, neck, chest and shoulders get very sore to the touch for 2 or 3 days after each time I’m on steroids. Even a simple hug or my seatbelt causes pain. I can’t tell if it’s a deep layer of skin or the top of my muscle, but it is hard to deal with. I have a lung disease that requires me to take them kind of often, but the side effects that follow are very painful and as of yet, unavoidable. I always do taper off but still get withdrawal symptoms.

Comment from: MMG, 65-74 Female (Patient) Published: May 29

I took 20 mg steroid daily for five days due to ear problems. After day four my vision was blurred, and I couldn’t drive or read. I was irritable, had muscle aching, weakness, fatigue, and increased appetite. I still feel bad after being off the drug for three days. I don’t want to take this again.

Comment from: JonL, 45-54 Male (Patient) Published: May 22

My symptoms of steroid drug withdrawal are headaches, dehydration, mood swings, sore throat, bloodshot eyes, fatigue, swollen glands, nasal congestion, and general malaise.

Comment from: NicoleS, 35-44 Female (Patient) Published: April 04

I started taking 50 mg of hydrocortisone after being treated for Cushing syndrome in August 2017. I have been taking it for about 1.5 years and have been tapering down 5 mg roughly every 6 to 8 weeks. I was progressively feeling better until I reached 35 mg. Then I experienced all of the symptoms mentioned in the article. What’s helped a lot is homeopathic treatments and exercise. The pain doctor is also saying I can better cope with pain through meditation and mindfulness.

Comment from: Jennie, 65-74 Female (Patient) Published: February 21

I was misdiagnosed with polymyalgia rheumatica (PMR) and put on prednisone for ten months but it didn't work. A rheumatologist diagnosed that I did not have PMR and needed two new hips instead. He advised me to come off the steroid reducing by 5 mg per month. The general physician recommended doing it more slowly. I was ok till I got to 6 mg. Now I can barely move, I have agonizing pains in joints and muscles. I feel very low. The prednisone gave me some horrible side effects and now withdrawal is causing extreme fatigue and pain.

Comment from: Sally, 45-54 Female (Patient) Published: February 05

I was on a 40 mg prednisone for 12 days for asthma problems. No taper. It has taken me 9 weeks to recover from the steroid drug withdrawal. I have had severe fatigue, insomnia, and dizziness. I feel sorry for people just starting this journey. I would hate to be on this long term. I will not use this again.

Comment from: U., 25-34 Female (Patient) Published: January 30

I was diagnosed with minimal change disease (nephrotic syndrome) in August 2018. I started off with taking 60 mg prednisolone for 2 months, 40 mg for 1 month, 30 mg for 2 weeks, 20 mg for 2 weeks and now I'm alternating between 10 mg and 5 mg every day. I feel even more miserable as I'm tapering off. I have severe joint pain, particularly in the legs and arms, extreme fatigue, stiff neck, reduced concentration and mood swings from steroid drug withdrawal. Getting out of bed is a real struggle these days but trying to push myself somehow.

Comment from: MrFizz, 75 or over Male (Patient) Published: January 24

I was on prednisolone for 6 days for strep. Twenty days after I stopped taking it, I came down with a rash, and fingers going to sleep on one hand, followed by stiffness and pain in the other shoulder. Two months later I started to have difficulty sleeping and developed prostate swelling. I told the doctor I was steroid sensitive. He said I needed to get the swelling in my throat down. All these symptoms are due to inflammation and are undoubtedly the result of the steroid drug withdrawal.

Comment from: Jan, 75 or over Female (Patient) Published: January 22

A month after stopping prednisolone I was dizzy and sick for 24 hours. I then had a small operation on my face (causing stress). Several days later I had joint pain in legs and shoulders. Sometimes I felt extremely cold. I have all over body muscle spasms weird feelings in head and feel extremely tired. My steroid drug withdrawal symptoms vary from day to day but seems a bit better today three months after stopping. Hope I soon feel normal.

Comment from: Sandie, 55-64 Female (Patient) Published: January 22

I was on 40 mg prednisolone for 10 days for a chest infection. I finished those 4 weeks ago. No tapering if the steroid. I have been excessively tired and lightheaded since then. I keep waking during the night. I wonder how long this lasts. Any success stories would be appreciated.

Comment from: Rose, 65-74 Female (Patient) Published: January 08

I want to know if steroid drug withdrawal symptoms ever go away. It's been 6 years for me on steroids and I haven't had any steroids since June 2, 2018. I get worse every day, struggling to breathe, my body on fire, and I can't walk. I want it to go, I was on Solu-Medrol.

Comment from: Rob , 35-44 Male (Patient) Published: January 03

I was on dexamethasone for brain swelling, prior to it being dealt with by radiotherapy. I would’ve died without it so there is that, but it took me two months after radiotherapy to get off the steroids. I had splitting headaches, was eating like a pig, had a weird potato head look, tongue went all smooth and painful... an adrenal crisis almost killed me as well, though that was provoked by pneumonia. I found taking a pill every other day was the best way to taper it, rather than simply reducing the daily.

Comment from: Anaam, 65-74 Female (Patient) Published: December 11

My steroid drug withdrawal symptoms apart from headaches, were quite mild. I reported to the doctor and was put back on prednisone for another 2 weeks to taper properly. I am not taking this again as I suffered more from the drug than my complaint. I hope the headache will clear with time. My help was taking plain yogurt, live culture to boost my immunity and it worked really well.

Comment from: Him_Roid, 55-64 Male (Patient) Published: December 05

I have just learned what my problem really is - steroid drug withdrawal! I have been on 50 mg/day of prednisone for about 2 months after bumping it up accidentally from 30 mg/day. I was on 30mg/day for 7 months prior. I can’t perform even minor exertion (like walking 10 steps) without heart rate soaring to 160 plus bpm and oxygen saturation falling to high 60 percent range. Doctor tried a 10 mg taper, and I went into congestive heart failure. Feet and ankles are horribly swollen. I stay dehydrated and everything is out of balance. My heart races and I have palpitations.

Comment from: lmnokey, 35-44 Male (Patient) Published: December 04

For 20 years I have been on a varying dosage of 5 to 30 mg prednisone daily for untreatable polyps, after 6 sinus surgeries. I've developed osteoporosis, but otherwise lucky to not suffer other serious side effects. My steroid drug withdrawal is another story - I've just completed a 1-month taper down to 0! It's a nightmare. All the symptoms here apply to me too. For me, the headaches, body aches and fatigue are the most severe. It's also really difficult to get up from sitting. I do believe it's going to get better!

Comment from: Jones, 45-54 Female (Patient) Published: December 03

I was diagnosed with minimal change syndrome. The disorder affects my kidney function. I was on 60 mg prednisone for three months and currently weaning off of it. Not sure which is worse, being on the steroid or coming off of it. On it, no sleep and it brought out the beast in me; rage and hunger, moon face. Off it, all I want to do is sleep. I can’t even exercise anymore because my joints and especially my legs feel like dead weight. And I am moody. The drug did its job but side effects are excruciating.

Comment from: Frustrated, 45-54 Female (Patient) Published: November 30

I have been on prednisone for polymyalgia rheumatica and GCA - giant cell arteritis for a month. I was started on high doses of steroid and being weaned down every week. I am so tired, fatigued, nauseous, have diarrhea and no energy - feel like I am dying at times. Body aches, ugh... horrible! Sometimes I think the medications are worse than the disease they are 'treating'!

Comment from: Sasha1980, 35-44 Female (Patient) Published: November 26

I was prescribed clobetasol ointment for an autoimmune skin disease. I had to use it for 8 weeks. I was told it was ok to stop abruptly because it was a topical steroid. It was definitely not ok! My heart was pounding out of my chest. I was lightheaded, my blood pressure was raised. I suffered from multiple severe panic attacks. Not just simple anxiety, pure fear driven panic! Daily dizzy spells, hot and cold flashes and just plain ill! Took weeks to recover. I will never take a steroid again!

Comment from: Theresa, 45-54 Female (Patient) Published: November 21

I had an autoimmune disease that was damaging my kidneys, and was put on 60 mg of prednisone a day along with a string of other drugs for 6 months. Felt like my joints were being ripped apart, the pain from steroid drug withdrawal was excruciating but worked through it all. Little did I know that it would take almost 6 months to wean off the steroids and the pain was unbearable. It's now been 2 1/2 years and I still have fatigue and nerve pain in my muscles and joints, am I the only one!

Comment from: Cin--Cin40, 55-64 Female (Patient) Published: November 20

I was in hospital for respiratory failure. After being on IV steroids for 6 days I got discharged. Then the day after I was out of hospital I felt like I was hit with the flu. It hurt just for my shirt to touch my skin. Thanks for someone letting me know it was because of steroid drug withdrawal. This is unreal!

Comment from: Terry, 65-74 Male (Patient) Published: November 12

I was diagnosed with extreme temporal arteritis 17 months ago and started on 100 mg prednisone. I am currently down to 3 mg. I had a flare up reducing the steroid drug from 15 to 10 nine months ago and was given 20 mg of methotrexate to offset future setbacks. Issue now is I have severe breathing difficulty. Prednisone or methotrexate is the culprit.

Comment from: Wm, 45-54 Female (Patient) Published: November 06

I am so against this steroid drug, it is horrible. Some people may need small doses, but I read these horror stories as I was given prednisone for an autoimmune disorder. I weigh 120 lb. and prescribed 20 mg a day for 3 days, take a week off and repeat. Side effects are awful when you are on them and when you get off of them. This is just my opinion, if you don't have to take them, don't. Look into things and checkout other alternatives. They wreak havoc on your system.

Comment from: Jan, 75 or over Female (Patient) Published: October 30

I have been on prednisolone 5 years, 35 mg to start with. The doctor put me on too rapid decrease and I ended up in hospital with steroid drug withdrawal symptoms. It makes me feel so ill so I have been decreasing 1/2 mg at a time, and each time I have terrible pains in joints, feel cold/hot, and have insomnia and muscle aches each time. Came off the final 1/2 mg completely a month ago. I feel like death. The first night without it I had my head in toilet retching and dizzy. Now I am left with usual joint and muscle aches, but will persevere as this drug just does not like me nor me it.

Comment from: Caramia1500, 45-54 Female (Patient) Published: October 25

I was given 40 mg of prednisone for 10 days for pneumonia and pleuritis and not given a taper. Within 24 hours of stopping cold turkey, I had extreme fatigue, body aches, severe irritability, nausea and diarrhea from the steroid drug withdrawal. I seriously wanted to murder my husband in his sleep. Chest pain from the pneumonia resolved, but the withdrawal side effects made me feel like I had a terrible hangover.

Comment from: Baronaire, 65-74 Female (Patient) Published: October 23

I experience insomnia and mood change with steroid drug withdrawal. Doctor never mentioned this, and I didn’t see it in the enclosed leaflet, and I researched google. I have bad arthritis also since early 30s, had 2 knee replacements and awaiting 3rd hip revision, also shoulder. Always took a great painkiller prescribed by pain clinic, pregabalin 100 at night. Brilliant!

Comment from: B loftis, 75 or over Female (Patient) Published: October 08

I am a 76 year old woman. I was on prednisone for 16 years and have been off it for 6 weeks and I feel horrible. I have extreme fatigue, skin rash all over with severe itching, panic attacks and depression from steroid withdrawal. I wish I knew how long this lasts and if anything can be done.

Comment from: Morven, 65-74 Female (Patient) Published: September 27

I just took prednisolone for 5 days, 40 mg a day. I am shaky, short of breath, and feel anxious and afraid. I can usually play music well bit couldn’t even manage that this afternoon. It is 2 days off them now and I feel awful, plus 2 nights’ sleep lost!

Comment from: Jazzie, 65-74 Female (Patient) Published: September 25

I was prescribed 40 mg of prednisone for 5 days for an infection. Doctor did not taper medication down. Two days after stopping cold turkey I started having severe achy neck and back pain. Severe muscle spasms in back still continue after stopping medicine 4 days ago. I am taking Tylenol for the pain. Hoping all this pain stops soon. Never will I take this medication again.

Comment from: ResQer, 55-64 Female (Patient) Published: September 24

With steroid drug withdrawal, I am having very high heart rates when taking only 3 or 4 steps. My resting rate of 78 turns into 140 bpm just that quickly. I become short of breath and need to sit down immediately.

Comment from: Benabbio03, 19-24 Female (Patient) Published: September 21

I was on prednisone for Crohn’s disease for 3 months and a week after stopping have experienced extreme tiredness, breakouts all over my face, extreme itching all over body, loss of appetite and the beginnings of a urinary tract infection. I am not sure how long these will last for but they’re pretty awful, the adverse effects of steroids outweigh the positives in my opinion.

Comment from: The joester, 45-54 Male (Patient) Published: September 19

I was give prednisone steroids, 15 days of maximum dosage of 4 pills a day. I had big appetite and mood swings, and it triggered my issues with anxiety, sleepless nights and cloudy feeling. Then the tapering down; near the end I started getting shakes, little appetite, diarrhea, mood swings, and depression. Now I'm off it completely for 3 weeks and still have the shakes, moodiness, and headaches are still a struggle but anxiety is at bay; that was probably the worst part. Doctor said I'm very sensitive to it and it's now a rollercoaster of good and bad days.

Comment from: Earthspirit, 55-64 Female (Patient) Published: September 11

I had long term use of steroid; 5 years. I got rheumatoid arthritis being treated with biological, stumbling around 7.5 to 8 mg. I am now on 5.5 and feel so disorientated, like not myself. Not a spaced out feeling just that everything seems strange and unfamiliar. Very weird feeling.

Comment from: Gatorsxray, 55-64 Female (Patient) Published: September 11

I have been on methylprednisolone on and off for about 11 years, to control a rare autoimmune disease called polymyositis. Every time I taper down to below 8 mg/day I develop painful swollen feet and swollen legs with pitting edema, and I can barely walk. Now completely off the steroid for 2 weeks and my skin has started coming off in flakes, and my scalp is developing patches of thick dry flaking skin. I am trying to find a new immune suppressant besides going back on steroids.

Comment from: nutty, 55-64 Female (Patient) Published: September 05

I had 30 mg prednisolone for 7 days to clear a chest infection. I feel very low and aggressive. The 2nd day with no steroids I feel extremely tired, muddled and have a huge appetite. If I am offered them again I will decline.

Comment from: Daisymay, 55-64 Female (Patient) Published: August 28

I am 62 years old and when I was 29 I was diagnosed with ulcerative colitis which involved flare ups now and then that would be treated with prednisone. I am now diabetic due to a rather large dose given by a doctor who didn't read my notes. Over 3 years ago I was given the drug infliximab every 8 weeks and before the confusion I was given cortisone 100.00 mg IV. Then about 12\14 weeks ago everything stopped because I was producing antibodies. I suffered horrendous muscle pain, fatigue and wished I were dead.

Comment from: Melanie, 55-64 Female (Patient) Published: August 20

With steroid drug withdrawal I have had severe fatigue, muscle and joint pain, stiffness in back, arms hips and legs, headaches, ventricular tachycardia. I also had sinus, kidney and urinary tract infections, and intolerance to other medications. I have been trying to get off steroids for over 5 years. I am on several other immune suppression medications to control underlying disease - sarcoidosis. Every time I get to a low dose below 10 mg these symptoms return and I end up having to go back up to high dose and start over again.

Comment from: Fallen1171, 45-54 Female (Patient) Published: August 08

I have been on steroid drug for over 15 years and still tapering, 135 mg to the current 24 mg. I got all but a few of what could happen with withdrawal. I am 'ghosting' most of the time. I have pain in horror movie stages, rashes are unreal and nearly died on more than one occasion. It is literally terrible. My only advice taper as soon as possible if you are on for short term and never take again. Long termers, huge hug. I understand all. Good luck with the journey.

Comment from: Hang Tough , 55-64 Male (Patient) Published: August 07

Severe fatigue, diarrhea, overheating and sweating, and severe psychological problems are my symptoms of steroid drug withdrawal. I suffer from severe depression and anxiety, and the doctor who prescribed prednisolone (UK version) appears to have taken no account of the serious effects this drug is known to have on mental health. If I lived in the USA I would be suing for negligence - to add insult to injury, he misdiagnosed my osteoarthritis as polymyalgia rheumatica. I should never have been started on steroids!

Comment from: Ann Messenger, 65-74 Female (Patient) Published: August 07

I was on 60 mg steroid a day for 5 days. After stopping I have been irritable, feel depressed, and it hurts to touch my bottom jaw. My jaw hurts when I chew my food too. Scary!

Comment from: Grateful501, 45-54 Male (Patient) Published: July 20

I was on heavy steroids for over a year. They are tapering me off every two months. My symptoms of fatigue and weight gain go on for a month and a half and then I have two weeks of a normal life and then I have to taper again. I have six more months of this. I don’t have much of a choice after my transplant. I am grateful to be alive. Stay strong, stay alive.

Comment from: HMV, 35-44 Female (Patient) Published: July 06

I am a 38 year old female that has metastatic breast cancer. It went to my brain and there was a lot of swelling that was causing seizures so they put me on Decadron in January 2018. I was on a pretty low dose 8 mg a day. I blew up like crazy. I went from 140 to 211 lb. Last month I started to wean off and felt pretty good. Then I got to 1 mg a day and the fatigue was so bad, and I had sore muscles, vomiting, and breaking out on my face. I see my oncologist tomorrow to discuss.

Comment from: Rose, 65-74 Female (Patient) Published: July 03

I am going through steroid drug withdrawal now. I have sharp stabbing pains and severe burning pain throughout the body. My legs, ankles and feet are swollen. It is hard to breathe and at times feels like I am dying. Every time they give me something new to try I get worse. I am suffering so bad, my face is burning bad and my central nervous system is on fire!

Comment from: Caregiver of Male Pt, 55-64 Male (Caregiver) Published: June 27

I am a caregiver and my client went on megestrol, an appetite stimulant. After a year and a half, he was having a lot of symptoms, but it got worse when an emergency room said to stop taking the megestrol, but didn't wean him off this steroid medication. Within weeks he was hospitalized with status epilepticus. He got some IV steroid after five days there and began to feel better, but not before feeling a whole lot worse. I thought he'd die. Finally, when he was discharged with 10 mg a day of prednisone, he was alive yet, unable to function without full assistance. I appealed to his primary doctor and got an increase but only to 15 mg. My reading says it should be a slow taper, so that'd mean around 35 mg. I appealed again - this time nothing. He is still sick. I am holding onto the hope that an endocrinologist can wean him off yet, he's had the weaning, just not done right. It is hard to get into see endocrinologists quickly. He had been given an antiviral vaccine too, and was about five months into it. He was found unresponsive! Apparently, one is never to take an antiviral when taking a steroid medication. Of course, one has to be aware they are on a steroid to start with in order to inform those doctors. Finally, if taken with an antiviral, these can set of autoimmune illnesses, if taken too long, that is past 2 and a half months. That might be something like fibromyalgia, but might also be something like multiple sclerosis.

Comment from: Xindi, 25-34 Female (Patient) Published: May 30

I am a 29 year old female here. I was prescribed 9 days of tapered prednisone for swelling of my tonsils due to strep throat. The Urgent Care doctor was concerned about an abscess forming so she wanted to get the swelling down right away. I was prescribed 10 mg tablets, 3 for 3 days, 2 for 3 days and 1 for 3 days. I woke up on the second day of my 1-a-day with hives on my face. By the afternoon they had spread to my chest, back and torso. The next morning they spread to my arms and legs. It's incredibly ugly, but the rash doesn't itch. Everything I can find says it is steroid withdrawal symptoms. This is now day 3 with the rash and day 1 without the prednisone. I kind of feel like the rash is starting to fade, but it's hard to tell. I'm glad it doesn't itch, but it's still an incredible inconvenience and Benadryl does absolutely nothing. I'm worried it's going to get worse before it gets better while my body re-adjusts to producing cortisol. I can't wait for this to clear up and get back to normal life. I don't have many other concerning symptoms - no fatigue, no stomach upset, just a really ugly rash, and I think my taste is off. Nothing has tasted good for a few days, especially water. The rash is worse on my shoulders and back right now, but it's everywhere. This is the first time I've taken corticosteroids - never again! It's been 2 weeks since I started feeling the symptoms of the strep and I'm still not out of the woods, thanks to the steroids. I read through many of the comments and haven't seen anyone else with a rash like this, so I'm not sure what to make of it.

Comment from: vanaly, 75 or over Female (Patient) Published: May 30

I was taking 10 medicines for mild COPD, sinus rhinitis, and allergies, but got a severe bronchial infection. The doctor gave me a shot of steroid, and a step down of prednisone. I am gradually recovering from the bronchial virus, but I am exhausted, weak, heart feels weird, sleepy, light headed, and miserable. I will never allow anyone to give me a steroid again; death is preferable. It is horrible. The only positive thing is a loss of weight, but I’ll probably gain it all back and feel worse than ever. I am furious with the pulmonologist that gave me the shot. I am 80.

Comment from: Royboy, 65-74 Male (Patient) Published: May 17

I had been on high dose steroids of 40 mg a day for five months because of recurring chest infections. After being admitted to the hospital I was diagnosed with atrial fibrillation. They cut the steroids down to 10 mg a day (Against my advice), resulting in a steroid crash. I had extreme fatigue, sickness and inability to move. It felt like I was covered in lead sheets, unable to move. After several hours I got an injection when they finally listened to me. It took about a week to get my appetite back, and strength.

Comment from: Sheila, 55-64 Female (Patient) Published: May 16

My symptoms of steroid drug withdrawal were weakness, dizziness, lightheadedness, nausea, diarrhea, no appetite and fatigue.

Comment from: Jen, 55-64 Female (Patient) Published: April 27

Dizziness and fatigue were my symptoms of steroid drug withdrawal.

Comment from: Jan, 65-74 Female (Caregiver) Published: April 23

I was prescribed steroids for muscle stiffness 6 months ago. I started on 8 mg, which did seem to help so my doctor started to reduce it 3 months ago, and I am now down to 5 mg. I feel unwell, tired and achy, and have low mood, night cramps, sweats and constant watery eyes. I have lost so much muscle on my arms and legs. It is unbelievable that a drug can have so many side effects, yet is still being prescribed. I have put on a great deal of weight, and still have a robust appetite. I am reducing by 2.5 mg a month, and now dreading the next change. Having read through all of the comments on here I feel I am not alone, and that has helped me a great deal.

Comment from: Ally M , 65-74 Female (Patient) Published: April 20

I have been on steroids over the past three years for rheumatoid arthritis. I had dosage lowered from 30 mg down to 5 eventually and weaned off over three months. I have been off them for a month now and have experienced all sorts of nasty things from nausea, diarrhea, lack of appetite, weight loss, urinary infection, and just feel absolutely terrible; want to sleep all the time. I wonder how long these symptoms are likely to last. I just need some help.

Comment from: gaylaf, 65-74 Female (Patient) Published: February 20

This is the second time that a 10 to 14 day course of prednisone has been followed by significant hair loss several weeks after stopping the medication. The good news is that after several months the hair began to grow back. I have been noticing itching, starting with my face and head; there is no rash but fairly constant, mild itching. Now I am experiencing periodic itching on different places on my body. I wonder if others have had these experiences from steroid drug withdrawal.

Comment from: Soldieron, 35-44 Female (Patient) Published: October 19

I was diagnosed with neurosarcoidosis and was on 60 mg steroid for a month and a half before weaning. I was weaned to 5 mg a week for four months and I have not been taking any steroids for a week and a half now. I have headaches occasionally and severe itching on my arms which I’m not sure is related or not. I’ve had off and on menstrual bleeding. Overall experience has not been terrible.

Comment from: Jan, 55-64 Female (Patient) Published: August 10

I was on 5 mg of prednisolone for 9 years. My general physician had me taper off over 4 weeks but my specialist has said it should have been more like 3 months. I am experiencing weakness, twitching, tremors, dizziness and lack of appetite so the specialist has put me back on my full dose until my symptoms disappear and then we will discuss a much slower tapering off.

Comment from: Sue, 55-64 Female (Patient) Published: August 01

I have been taking prednisone for approximately 10 months. I was on 40 mg daily then decreased by 5 mg per week until down to 5 mg, and was remaining on 5 mg for the last 6 weeks. I stopped taking them, to my delight, 6 days ago. I am 64 years old and expect to get a few aches etc., but the last couple of days, my arms and legs are aching. I am finding it hard to get out of the chair or walk upstairs. The dose has been low for at least 8 weeks now, it is likely I am having steroid drug withdrawal symptoms. If they are likely to stop soon I can put up with them, but with a holiday looming I want to be able to walk around. My underlying pathology is late onset eosinophilia asthma.

Comment from: Yogagirl, 65-74 Female (Patient) Published: July 03

I was put on prednisone for 7 days, 20 mg for severe ear and sinus infection, along with antibiotics. No taper of prednisone and I ended up in the emergency room (ER) with severe migraine, diarrhea, and fainting. After 6 days of ER visit, side effects still persist, but not as bad. I am hoping all problems will cease in the next 5 days. Will never go to that doctor again, or take prednisone again. I asked the doctor for taper version, and he said no, this was better. He was wrong!

Comment from: Carolina, 65-74 Female (Patient) Published: May 01

I was on prednisone for 2 weeks. I was given it for a bronchial problem and cough due to mold. I already had minor joint pain especially in one knee but I noticed the joint pain in the knee and shoulders was gone. I thought this drug was wonderful! However after stopping the regimen the joint pain returned much greater than before. I mentioned this to the doctor and he suggested Tylenol. I now get a rash and nausea and mild diarrhea. I get a bloated feeling whenever I eat and cannot finish my meals. It has been three weeks and the joint pain in my knee and shoulder and wrists still continues. I can barely sleep without Tylenol.

Comment from: Iowagal, 55-64 Female (Patient) Published: April 25

I tried to withdraw from prednisone use for almost 2 years. As I taper I experience extreme fatigue and weakness which contributes to muscle mass loss and depression due to deteriorating physical condition and inability to do normal physical activities. Each time when I must increase back to an immune suppressing dosage I experience a return of hot flashes and inability to sleep, in addition to listed side effects. Do not go on this drug unless you know your life is in danger otherwise. I was on it for a short time 2 weeks before I experienced dependency.

Comment from: CarolAnn, 75 or over Male (Caregiver) Published: February 14

My husband was put on prednisone (gradually increasing the dosage until he was taking 60 mg per day) for myasthenia gravis. He remained on 60 mg per day for approximately 2 months and that put the myasthenia into remission. Then he began the weaning process. When he weaned by decreasing 5 mg per week, to the 50 mg level he began experiencing many steroid withdrawal symptoms; fatigue, lightheadedness, weakness in his legs, brain fogginess, orthostatic hypotension, foot and ankle edema, fine tremors in his hands. After consulting his neurologist he was advised to continue weaning at 5 mg less each week. He is now at 40 mg per day. He is still having weakness, lethargy and foot and ankle edema as well as shortness of breath. Doctor wants him down to 30 mg per day before he sees him again. Meanwhile, his primary care physician has taken him off blood pressure medications and is checking out any possible cardiac involvement since my husband does have a pacemaker. This is a very disheartening state of affairs. We keep getting told by neurologist this is not from prednisone but we are pretty sure that prednisone has a great deal to do with how lousy he is feeling.

Comment from: Rosie, 55-64 Female (Caregiver) Published: January 24

My husband is experiencing severe migraines after a 3 week course of prednisone. I wonder how long the withdrawal symptoms last.

Comment from: Kit Kat, 55-64 Female (Patient) Published: August 24

Due to chigger bites I was given a prednisone shot and then put on 40 mg daily oral. I was not given a reduced dosing and within 48 hours of the last 20 mg pill my withdrawal symptoms started. I am also hypersensitive to any drugs to begin with. I ended up the emergency room (ER) 72 hours after the last dose, with severe abdominal cramps, diarrhea, passing blood, anxiety, dizziness, dehydration, fatigue and brain fog. The ER did not class it as withdrawal and sent me home with intestinal remedies for gastritis. Today, 5 days since the last dose I am still suffering with most of the above symptoms and my digestive and intestinal system is still not working properly. I have an appointment with my doctor tonight to possibly give me something to counteract the withdrawal symptoms. From now on, no prednisone!

Comment from: alegrdl, 45-54 Female (Patient) Published: August 05

I also am on prednisone 5 mg, for rheumatoid arthritis. I have gained a lot of weight, it's not from so much eating; it is the medicine that has me swollen. I decided to take myself off the steroid too, and I'm also going through withdrawals. I have bad headaches and joint pain, what everyone is going through to detox from this medication. I'm tired of feeling like this, and I refuse to go back on it. I also still exercise every day and after all the work I have done I still look chubby. I need to feel better.

Comment from: suzieQ, 65-74 Male (Caregiver) Published: April 19

My husband was on 4 mg of a steroid drug for 4 months due to spinal stenosis. He acted kind of hyper-euphoric at the beginning. Then he developed the moon face. He has been weaning off for the last 2 weeks and has been having a terrible time with many of the symptoms listed in this article including muscle weakness, tiring easily, light headedness, and now today, fever. I read here that they don't know how each dose effects different people. My husband has a very sensitive system and I will not allow any doctor to prescribe long term steroids in the future! This stuff is dangerous.

Comment from: Preston, 55-64 Female (Patient) Published: April 12

Nine years ago I got a disease called neurocysticercosis. I had swelling of the spine and could not move my legs. I took 60 mg of prednisone for 3 months. Well, the doctor started to take me off and he ended up doing it too fast and I literally almost died. I got dehydrated, blood pressure dropped and was totally out of it. When my husband got me to the hospital the doctor said it isn't a matter or re-hydrating her, it is a case of keeping her alive. I was very lucky. They put me back on the prednisone and tapered slower. Now fast forward to this January. I ended up finding I have low cortisol. So they put me on hydrocortisone. It has been about two months and I began to have awful fatigue, severe headaches, and horrible nausea. I weaned off but still nauseous and extremely tired. I have decided I will never take these again!

Comment from: millie, 65-74 Female (Patient) Published: March 29

I was on prednisone for two weeks; 40 mg for 5 days, 30 for 4 days, 20 for 3 days and 10 for two days. I was shaky and jittery with symptoms of steroid drug withdrawal for the whole 2 weeks. Now I have been off for 3 weeks and am still having the shakes, fatigue, light-headedness, and was having bad chest pains. I ended up in the emergency room, diagnosed with either bleeding ulcer or bad GERD. I have no energy, cannot walk for any length of time without being exhausted. I will never take that drug again and do not know why doctors ever prescribe it. I don't know how long this is going to last and am just really tired of it.

Comment from: Jackie, 55-64 Female (Patient) Published: February 18

I have been taking hydrocortisone 10 mg for about a month. I got the flu on Sunday, for the 3rd time in 2 months, and stopped taking the hydrocortisone since I was sick. Then I read the label that said you are more prone to fight off infections. So I decided to stay off the hydrocortisone. Now I am still feeling extremely week and fatigued, and have a terrible cough. I am wondering if these are symptoms of not taking the hydrocortisone for 4 days, and if so how long the steroid withdrawal symptoms last. I am wondering if I should go back on the hydrocortisone and wean off or just continue to stay off of it.

Comment from: Savedmylife, 45-54 Female (Patient) Published: February 08

I had a pituitary tumor however surgery couldn't remove it all so I had radiation. This killed all my hormones so I was put on prednisone. After 3 years, thank goodness I changed doctors, as my liver functions were above normal, sugar levels high, blood pressure high, cholesterol high, and gained about 60 pounds. Once I was healthy again he was weaning me off. But since I was on them for over 5 years he had to wean me off slowly. I have been off for 7 months and still feel it. I have had every symptom listed and still get fatigued. It has been a very long journey but I am so healthy now and I know eventually (I hope) I will get my energy back. When I hear the word steroids I just cringe. Stay healthy.

Comment from: rowdyirish1, 45-54 Male (Patient) Published: January 20

I was diagnosed with Crohn's disease five years ago and the symptoms were mild for the first four. After a very nasty flare up I went to the clinic and was initially prescribed 80 mg of prednisone tapering to 60 then 40, etc. It has been over a year now and I have bounced back and forth from 20 to 30 mg depending on the severity of symptoms. Every time I tried to get below 20 mg the symptoms became too severe to manage. Finally I was able to get approved for Humira and no longer needed the prednisone. The gastroenterologist told me that prednisone can shorten life expectancy which scared the daylights out of me. I told myself that I was going to get off of prednisone if it killed me. Well, it almost did! After losing faith in the doctor who prescribed the steroid I decided to taper off myself. I went from 20 to 15 with a little nausea and fatigue and then down to 10 with the same results. When I tried to drop from 10 to 5 I thought I was going to die. I experienced horrible fatigue, nausea, acid reflux, gas, headache, joint pain, muscle spasms, chills and fever. At the time I didn't put two and two together because I didn't have much trouble dropping from 20 mg to 10. That last five mg made all the difference in the world. Now I know why they say not to taper off of prednisone without a doctor to advise you. To think that I spent 7 days in agony because of my own stupidity makes it even worse. Trust me when I say you do not want to attempt this without medical supervision.

Comment from: Lotsopain, 65-74 Female (Patient) Published: January 20

I was diagnosed with rheumatoid arthritis (RA) in 1992. I've been on prednisone on and off all this time. I do go off of it slowly but still get the withdrawal symptoms. Sometimes those pains are worse than the pain from the RA. The muscle soreness and weakness is horrible. I'm off now and am miserable. I'm so tempted to go back on one pill a day.

Comment from: Spuds, 65-74 Female (Patient) Published: January 20

After 2 years on prednisone 10 mg I tapered off as suggested by the doctor. Now I am having muscle aches in arm and legs.

Comment from: Tom, 65-74 Male (Patient) Published: January 20

I have a prior entry on steroid drug withdrawal, male patient on November 12. Now I am getting some muscle pains that ease during the day. It seems 1.5 mg was the tipping point. This morning (always do it on a Monday) I reduced it to 1 mg. I am going up the gym to do the weights and weight machines, immediately after this. I have muscular pain around shoulder/upper arms and vague elbow and knee joint pain early mornings. Lying in bed first thing in the morning, I feel some aching across the pelvis or hips. I wonder if it is because I need a new mattress or because it was wet and I sat in a chair all day Sunday or just old age being masked by prednisolone. It is annoying and only slightly incapacitating but like the rest of you, I could certainly do without it! Keep moving!

Comment from: Dawn, 55-64 Female (Patient) Published: January 05

I was diagnosed with giant cell arteritis one year ago and started out on 40 mg of prednisone. I have been tapering down for months. I had one relapse at 20 mg, but now am down to 5 mg, and tomorrow I begin 4 mg for two weeks. I am decreasing by 1 mg every two weeks; very slowly but it seems to be okay this way for me. I do have withdrawal symptoms; lower legs hurting, sore knees, and fatigue, so I am anxious to get off the prednisone for good. I am hoping that all the side effects such as weight gain and the typical moon face, from using the drug, will go away as well once it is out of my system.

Comment from: Lisa, 45-54 Female (Patient) Published: December 29

I've been on prednisolone for 8 years, for the kidney transplant I had, but now I am being tapered off, due to avascular necrosis (AVN) in my knee. Every time I drop 1 mg l am suffering with aching limbs severe neck and head ache. It's like flu, but neck and head pain are the worst ever. I was also sick last night. I do wonder if this is all worth it.

Comment from: 65-74 Male (Patient) Published: November 12

I had giant cell arthritis, which affected sight in my left eye, now fully regained. I was whipped into hospital off the street and placed on a drip with 65 mg of prednisolone. Let home after 2 days, had difficulty remembering things like my piano lessons, moving at a quarter to half speed without realizing it. At all stages during slow withdrawal (one relapse, back up to 20 mg from 5 mg) I maintained my usual attendance at the local gym. I had to reduce the weights accordingly, continued to run shorter distances, all with reduced efficiency. Now I am down to 3 mg, I am functioning near normal levels and do not recognize the symptoms being described (for which I am grateful)! Yes, I did have the night sweats, which was so alarming, and mental sluggishness. Other than that, I seem to be nearly (fingers crossed) home free. I wonder if the exercise helped or I was just lucky.