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Prednisone Withdrawal: Can You Ever Stop Corticosteroids?

Corticosteroids are prescribed to millions of people for a variety of medical conditions. Many may not be told about side effects or prednisone withdrawal.
Prednisone steroid

Corticosteroids are powerful double-edged swords. One side of the blade is beneficial. It can save lives. The other side can do incredible harm. Balancing the benefits against the risks of drugs like prednisone, methylprednisolone, prednisolone, cortisone, dexamethasone and hydrocortisone requires great vigilance. Stopping steroids can be complicated. Prednisone withdrawal can be challenging. You will read some amazing stories from people who have tried.

The Popularity of Prednisone:

Prednisone and related steroids are best sellers in the pharmacy. According to our calculations, almost 40 million prescriptions for oral corticosteroids are dispensed annually in the U.S. What accounts for this popularity?

Allergic Reactions:

There are many serious conditions that require a powerful immune-suppressing medicine like prednisone. A life-threatening allergic reaction may call for prednisone to calm an overactive immune system.

If someone develops a severe allergic skin reaction to poison ivy or a medication, dermatologists often prescribe both an antihistamine and a corticosteroid. An acute asthma attack may also require a prescription for prednisone or some other cortisone-like drug.

Autoimmune Disorders:

Autoimmune conditions such as rheumatoid arthritis, lupus, polymyalgia rheumatica or inflammatory bowel disease (Crohn’s) often respond to prednisone. So does Addison’s disease (adrenal gland dysfunction).

If you see the suffix “-itis,” it usually means inflammation. There are a number of conditions under the myositis umbrella that mean inflammation of muscles. They include polymyositis, inclusion body myositis and dermatomyositis, which can also affect the skin. Prednisone is often prescribed to calm down an overactive immune reaction that has created havoc within the body.

Cancer:

Cancers such as multiple myeloma, leukemia or lymphoma may require courses of prednisone or some other corticosteroid.

In recent years we have seen tremendous enthusiasm for immunotherapy against a wide range of cancers. Checkpoint inhibitors such as nivolumab (Opdivo), ipilimumab (Yervoy) and pembrolizumab (Keytruda) have revolutionized some cancer treatments.

But these medications can push the pendulum too far and trigger an overactive immune system. Some patients develop severe skin reactions (dermatitis), inflammatory bowel problems (colitis), nephritis (inflammation of the kidneys), pneumonitis (inflammation of the lungs) and encephalitis (inflammation of brain tissue). Corticosteroids are often prescribed to try to calm down the immune system. People who get organ transplants may also require such steroids.

Prednisone Side Effects:

Insomnia and Irritability:

Despite the numerous benefits of steroid-type medications, there are serious side effects to contend with. Many people have great difficulty sleeping when they take prednisone. Irritability is quite a common complaint as well.

Ella describes her reaction to prednisone:

“I’ve been on prednisone for two weeks for sudden hearing loss in one ear. At my last doctor visit, I was given another prescription for two more weeks to eventually taper off the drug. The side effects are awful. I have difficulty focusing, brain fog and jittery feelings. I get irritated by things I’m not normally irritated by. I am also waking up in the middle of the night.”

D.L.B. experienced a psychotic break on prednisone:

“I am one of the unlucky people that experienced severe mental reactions during and after my short course with prednisone for Crohn’s colitis. I also had some pretty bad physical side effects. A daily dose of 10 mg brought on a psychotic reaction. I ended up in psychiatric care for 14 days because of delusions and paranoia. I was given anti-psychotic drugs to pull me out of that state. Reactions like mine do occur. I and many others are living proof of these psychological side effects.

Toni was not warned about side effects:

“I’m on my second round of prednisone for Bell’s Palsy after being prescribed a round for sudden loss of hearing in my left ear. Sadly, my hearing did not come back, but my Bell’s Palsy symptoms have subsided.

“I have felt manic, irritable, aggressive and ravenously hungry. I can’t sleep more than 4 hours a night. My face is swollen. I got so angry I ended up kicking a footstool and breaking my toe. I’m on my last two days and cannot wait to be off this medicine. I feel like the Hulk all the time. My doctor said nothing about these side effects.”

Other Prednisone Side Effects:

Other side effects include fluid retention, elevated blood pressure, mood swings, confusion, dizziness, headache and muscle weakness.

Prednisone can also throw body chemistry out of balance. Some people end up too low in potassium, which can be a life-threatening situation. Others end up with high blood sugar or even diabetes if they take the drug long term. Blood clots in veins, infections and ulcers may occur within a few weeks of starting the medication.

Long-term steroid use can weaken bones, leading to osteoporosis and fractures. Cataracts and glaucoma may also result from prolonged prednisone administration.

If you would like to learn more about prednisone side effects, here is a substantial article we have written on this topic. More than 500 readers have rated this post 4.4 out of a possible 5 stars. There are over 1000 comments.

Prednisone Side Effects: Deal With The Devil?
Prednisone is a valuable medication for many serious conditions, but prednisone side effects can be serious, including sepsis and psychological reactions.

Prednisone Withdrawal: Devastating Side Effects!

Patients are not always adequately warned that they may have trouble stopping corticosteroids after several months or years of treatment. Rapid prednisone withdrawal may lead to symptoms such as fatigue, weakness, muscle and joint aches and pains, headaches, irritability, digestive distress (loss of appetite, nausea, vomiting, diarrhea), weight loss and brain fog. 

One person wrote about her experience with prednisone withdrawal:

“I’ve been on prednisone continuously for over nine years to treat lupus. The drug saved my life at a time when my kidney, liver and bone function were severely affected by the disease. Several doctors have told me I’m fortunate to have responded, as my prognosis at the time was death or late-stage multi-organ failure within a year or two.

“I have also been fortunate to avoid many common side effects. However, the weaning process is a bear. I’ve never been given advice on the procedure, other than to take it slowly. Inevitably doctors are surprised when some new autoimmune syndrome pops up as the weaning progresses, necessitating more steroids. This feels like taking one step forward and then two steps back.

“Presently, due to my previous physician retiring, I have a new rheumatologist who treats me like a non-compliant patient because I have not weaned to zero. My continued attempts to wean below 5 mg per day result in headache, nausea, diarrhea and most scarily, trouble breathing. Thankfully, I have an understanding and supportive primary doctor.”

People who have been on corticosteroids for long periods of time will likely need a personalized schedule for tapering. Dropping the dose too quickly can lead to fatigue, joint pain, body aches, muscle weakness, lightheadedness and digestive distress.

It may take many months for the adrenal glands to adapt to lower doses of prednisone. There is no single weaning formula that works for everyone.

Here is Angela’s story about prednisone withdrawal:

“I have had to take prednisone several times in the past few years for ulcerative colitis. When you are on a high dose, you will have terrible symptoms. For me it is insomnia and ‘roid-rage,’ as well as muscle weakness. And a very puffy face. And a ridiculous appetite and almost uncontrollable weight gain (which I figured out I can control if I’m ridiculously disciplined). And heat sensitivity and edema and anxiety and the list goes on…

“When I am tapering I am more prone to acne as my adrenal glands are trying to kick in again. When I get down to 20 mg I start to feel human again.

“Since I’m used to having to take it long term (prednisone withdrawal taper over 6 months), it can get tricky as you reach low doses. You feel tired for a few days to a week or so after you drop your dose. For me, going from 10 mg to 5 mg can take me a week or more to recover from.

“Last year, it took me about a month for all the acne and moon face to clear up after total prednisone withdrawal. The same thing is happening on this round for me: each time I taper, it takes a few weeks for my symptoms to normalize as my adrenals slowly take over from the steroid. Be careful to monitor mineral levels and supplement if necessary!

“Low energy can be a result of not being able to sleep well, as much as it can be adrenal fatigue. That can occur if prednisone withdrawal is carried out too quickly. Because your adrenal glands are shut down by the high dose of steroids, your adrenals can’t keep up, causing tiredness, symptoms of your disease and other weird things as you taper off.”

Karen describes prednisone withdrawal and what happens when she gets down to 7 mg:

“I’ve been taking prednisone for nine years. Yup. Nine years! I live with dermatomyositis (DM) and polymyositis (PM). My dose has been as high as 60 mg multiple times.

“The adverse effects for me have been as horrible as others described. I have also endured a spontaneous prednisone-related hip fracture (even though I’ve never fallen). My eyesight has been permanently affected, and I now have osteoporosis.

“I’ve made tremendous progress using holistic protocols to eliminate trigger foods, taking restorative measures to repair the gut, eliminating as many everyday environmental toxins as possible (cosmetics, soap, household products, etc.), healing latent autoimmune-related infections, and addressing mental, emotional, and physical stress.

“By radically restructuring my life, my dose of prednisone has been a steady 8 mg for several years now. My problem is that when I try to reduce my dosage, I can’t get below 7 mg without going into freefall with the DM and PM. And I am reducing s-l-o-w-l-y — 1/4 mg staggered reductions for as long as it takes my body to adjust. Getting off prednisone safely is my long-term goal!”

Prednisone Withdrawal: Gradual Taper is Crucial!

We have been terribly disappointed by the Food and Drug Administration and medical organizations when it comes to drug withdrawal in general. We have written extensively about tapering off antidepressants, antihistamines, PPIs and pain relievers and the lack of clear guidance. Here are some links to those articles:

Tramadol Side Effects and Withdrawal are Daunting
When choosing a pain reliever, prescribers do well to keep tramadol side effects and withdrawal syndrome in mind.

Do Doctors Know About Zyrtec Antihistamine Withdrawal?
Why doesn’t the FDA require a warning about cetirizine – Zyrtec antihistamine withdrawal on the OTC drug label? Ditto for levocetirizine (Xyzal). Help FDA!

How Can You Get Off a PPI Without Withdrawal?
Many people who have taken an acid-suppressing drug for months or years could use advice on how to discontinue their PPI without withdrawal symptoms.

Stopping Duloxetine Leads to Terrible Withdrawal Symptoms
Withdrawal symptoms such as headaches, nausea, dizziness and ‘brain zaps’ can make coming off the antidepressant duloxetine (Cymbalta) a terrifying ordeal.

Where Are the Prednisone Withdrawal Guidelines?

We wish there were better guidelines for physicians and patients so they can better navigate prednisone withdrawal. When you search major medical sites on the web and seek information about strategies for tapering off corticosteroids you get things like:

1) Never stop steroids on your own!
2) Always follow your doctor’s instructions
3) If you experience withdrawal symptoms, contact your physician for dosing adjustments

The trouble is that physicians do not always have a clear game plan for prednisone withdrawal.

One source described the process this way (Medical News Today): 

“When doctors prescribe prednisone, they will generally specify a dose that gradually tapers down over several days to prevent prednisone withdrawal.”

Really? Several days? For people who have been on high doses of prednisone for months or years, it is unlikely that “several days” will be an adequate tapering process.

Even the esteemed Mayo Clinic provides rather general information

“The amount of time it takes to taper off prednisone depends on the disease being treated, the dose and duration of use, and other medical considerations. A full recovery can take anywhere from a week to several months. Contact your doctor if you experience prednisone withdrawal symptoms as you are tapering off the drug.”

We cannot offer medical advice. What we can tell you is that gradual prednisone withdrawal may make much longer than a few months if you have been on steroids for a long time. Reducing the dose below 5 mg can be especially challenging.

It may require special formulations that allow patients to cut their dose by infinitesimally small doses over the last several months. Each person will react differently to adrenal suppression. Finding a safe tapering plan will require patience and an understanding physician who is willing to work with you to find the safest plan forward.

Please share your own story in the comment section below.

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.” .
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I was on 80 mg of IV prednisone for 8 days and was told I didn’t have to get a dose pack right away, so I waited a day. I got very ill. It ended up taking a specialist and over four months to get me off prednisone. I gained 50 lbs. and was the most uncomfortable I have been in my life. I refuse all steroids now and have it in my medical records not to use unless a life and death situation.

Even in five brain surgeries I have had I said NO steroids. They did inject a very tiny amount during the surgery, but no more. It took me months to take off the weight, with tons of work/exercise. I felt like I would pop if anyone poked me anywhere because I was so bloated the entire time. I am also not sure it didn’t cause my ease of getting C-Diff if I take even one antibiotic. I know prednisone is supposed to be a good thing, but for me, never again!!

I have an autoimmune disease that is relapsing and remitting. I’ve never been in remission, but I have had worsenings which I call relapses from baseline. I have been on two steroid tapers (after long term dosing, i.e. over a month of using steroid). Due to the inflammation that is invited back once steroid is lowered, there can be significant symptoms, even symptoms not previously related to the original symptoms. Tenosynovitis is one example. I had zero tenosynovitis until I tapered prednisone, then I had it bad. Once steroids were re-introduced, the tenosynovitis improved (not cured) quite a bit. I’m worried that as I taper again, I’ll worsen. I think it’s important to taper slowly, for sure. Maybe 1 mg per two weeks. Steroids are like heroin (although I have no first hand knowledge, just what I hear)….once your body gets them, it wants them back, regardless of the price it pays (osteoporosis, fractures, cataracts, diabetes, avascular necrosis, thin skin, easy bruising….etc etc etc. Please, someone invent something better!

The British support site for PMR has an excellent Dr.-recommended protocol for very slow prednisone withdrawal. Not to mention a lot of input from fellow PMR patients. I am one who doesn’t seem to be able to get below 8 mg. My Dr. says that is ok, especially since I am at risk for GCA.

I was on prednisone intermittently for two months. I have not taken prednisone for four months now, and I have not experienced any side affects at all.

My husband’s PA put him on 40 mg of prednisone a day for a week with no tapering off. He suffered the whole list of withdrawal symptoms for 2 weeks, thought he was dying. I assured him he was not because I knew what was wrong with him & that he would get over it.

I took prednisone daily for 13+ years. I took as much as 20mg a day, but reduced it whenever I could. When the new generation of drugs became available to treat RA, I was able to stop taking prednisone. My doctor prescribed a slow taper for me of 1mg every 2 weeks, at a time when I was taking 10mg daily.

I did okay with that taper until I got below 5mg and I needed my adrenals to start to function again. I experienced respiratory distress, extreme blood pressure drops, and worst of all my lips and my throat swelled, so I had to increase the prednisone again.

I finally decided to take charge of my own taper and taper slower than my doctor recommended. I tapered 0.5mg at a time. I timed my taper so that I could have 3-4 days to completely rest. I stayed on that dose until my body recovered from that taper and then I reduced my dose again by another 0.5mg. I often waited several weeks between 0.5mg reductions. As I told my doctor, “I let my body tell me when to taper.”

It took me a year to completely stop taking 10mg of prednisone and most of that time was spent reducing the dosage from 5mg to 0 mg. Once I was completely off of prednisone, my doctor told me that he expected that I would not be able to completely stop taking it. It was hard but well worth it.

I started with 20 mg for polymyalgia..which helped and tapered off successfully to about 5 mg. I was at that level for 1 year, then 4 mg for 1 year….etc.
I can’t seem to get below 2 mg.
At 20 mg I wanted to ‘take no prisoners’ lol!
I have some pain but am doing all I can to stay at 2 mg. I take enough to maintain employment! I got down to 1 mg over the summer. Winter is worse.
Acupuncture helps take the edge off pain. I often get a treatment the day before I go out of town for work.
To taper off, I think I would need to do it by .5 mg next time…doctors thing I should just be able to taper off to 1 mg and then nothing in 2-4 weeks. Not that easy.

I didn’t see this mentioned, and it is minor compared to everything else mentioned here, but my essential tremor was greatly exacerbated by prednisone but, fortunately, it abated soon after my treatment ended.

I had trouble with prednisone withdrawal after only being on it for a week. I followed the physician’s standard instructions for tapering and it didn’t work at all. I kept getting a kind of rebound effect where my asthma-like symptoms would die down, then kick back in. I ended up having to step down 1/4 of pill every 3-4 days to finally get off the darn things!

I was on Prednisone for around a week and tapered off per instructions. My side effects while taking it were
1. Numb mouth.
2. Burning mouth.
3. Metallic taste.
4. Fatigue
5. No sex drive.
My withdrawal symptoms (went off drug Friday night):
1. Aching and painful legs Saturday afternoon through Monday afternoon. Walked like I was bow-legged.
2. Headache overnight Sunday into Monday afternoon.

I now list Prednisone on my drug allergy list.

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