Steroid Withdrawal is what happens when you stop taking steroids. It's a pretty immediate cause and effect. Stop steroids and, very shortly, you feel like crap. The hallmark symptom, in my experience, is muscle pain, essentially all over your body. If you happen to work out when it hits, you will find yourself inordinately sore to the point where you won't be exercising again any time soon. That is steroid withdrawal.
It is not dangerous per se, just really unpleasant.
Steroid Withdrawal can also cause low blood sugar and low blood pressure similar to an adrenal crisis, but unlike an adrenal crisis, it's not an emergency. You can treat the problem yourself by increasing salt consumption and eating a few more simple carbs every day.
You should notice an almost immediate improvement with salt and sugar.
Steroid Withdrawal will resolve in a week or two--longer in some cases. The trick is to manage the pain with Tylenol/Advil, eat salt, eat sugar and rest until the worst passes. You should notice a slow, gradual progression of improvement which is a good sign that it's steroid withdrawal.
With regards to the pain of steroid withdrawal: For Cushings patients, who actually have brain tumors that cause steroid-like problems, they often get prescription narcotics for the muscle pain of steroid withdrawal (which is really cortisol withdrawal for them because in Cushings your body makes way too much 'steroid' all by itself, but the symptoms are identical to steroid withdrawal). So the pain is significant. No doctor is going to give you narcotics for this because they rarely have much experience with it, so don't expect that, but realize the muscle pain can be severe and you will still be okay.
The treatment for steroid withdrawal is either time and sucking it up or some doctors will compassionately prescribe more steroids and do a slower taper to give your body time to adjust. In my reading, the doctors most likely to prescribe steroids for withdrawal are Rheumatologists or GI docs. Any other specialty and you are most likely out of luck.
An adrenal crisis is what potentially happens when your adrenal gland function has been suppressed by the use of steroids. Typically, steroid use longer than 5-14 days at doses higher than 5mg of prednisone can result in adrenal suppression.
Suppression means your body is literally not making the steroids you need to function. It forgot to 'wake up' after the prescription steroids stopped.
Which can lead to an adrenal crisis, but just because it can doesn't mean it will. Most people are fine. The vast majority of people are luckier than me in this regard.
For me, the hallmark adrenal crisis type symptoms I have are the stomach/back/flank pain along with nausea, diarrhea, profound lethargy, feeling like I'm going to pass out, shortness of breath, loss of appetite, low blood pressure sometimes with accelerated heart rate and complete inability to function in my daily life.
The dishes don't get done, I can't work, I can't exercise. My life screeches to a halt.
Sometimes people who ask me if their adrenals might be a problem are also working full time, working out every day and regularly cleaning their house. That level of function is NOT possible with acute adrenal insufficiency. There is no living, there is just inertia that sucks the soul out of your life.
While joint pain is listed as a potential symptom of adrenal crisis, I have only ever had serious pain with steroid withdrawal.
As long as I don't have the stomach/back/flank pain AND low blood pressure, I figure I'm okay. When those two pop up together, I get worried.
So that is the difference between steroid withdrawal and an adrenal crisis.
Any questions?
In March after being in the hospital for asthma, I immediately had steroid withdrawal symptoms once I started an alternate day taper. I actually ended up in the ER because, while I knew all about suppression, I was not yet familiar with steroid withdrawal. I thought I was suppressed (which I was but it wasn't possible to know that yet unless someone ran the right tests, which no one did) when actually I had withdrawal symptoms.
Things later crossed the line into potential adrenal crisis when the back pain started. It felt like someone was holding a blowtorch to my kidneys. The heat in my body was intense, unlike anything I have ever experienced.
If I had not found a half way intelligent endocrinologist, there is no doubt in my mind that I would've had a true, life threatening adrenal crisis.
The really confusing thing about adrenal suppression (a.k.a. Secondary Adrenal Insufficiency) is that you get to experience steroid withdrawal mixed with the potential of an adrenal crisis. As you stress dose and then taper, you're (potentially) going to go through withdrawal again and again. Which is stressful, which can tax your adrenals triggering crisis like symptoms. It is a vicious and unpleasant cycle.
Most people are, allegedly, not suppressed that long. The medical literature believes that Secondary Adrenal Insufficiency caused by steroids only lasts a month or so. This is utter bullsh*t in my experience. I have had this three times and each time it has been a journey of about a year to get full adrenal function back and then 1 to 2 years after that to fully recover.
It has never been as easy as the medical textbooks make it out to be.
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Me too I am in withdrawl and it is awful! I was only on steroids for 4 days, but my PCP overdosed me on dexamethasone (64 times the physiologic dosing) I was so burnt out and adrenals felt like they were crashing before this happened so I just took it trusting he had investigated the correct dose. Now he is harassing me to come back to work when I can barely function. Worse yet I am a doctor and he wants me to come back to work "in a wheelchair". Not enough energy or stamina to even wash my own hair in the begining. Now 2 months later can ride bike at gym for 10 minutes but then exhausted the rest of the day. I agree so many doctors don't understand this it is embarassing. Sorry to hear you are experiencing the same symptoms, hope you feel better soon. One of my 3 endocrinologists knows what is going on, he said my life would be "hell" for 9 months. I wasted my time and money flying across the US to get expert opinions trying to get well sooner so I could go back to work.
ReplyDeletewow...its interesting post....my adrenals tanked after takin pred and its been 12 months this month...and although i am not better yet its beter than the constant crisises i was having when on and even after pred usage...i have stayed out of hospital and lost 6 stone of pred weight since...and hope to return t work by the end of next yr....my life is at present like sitting on the bench in a team and watchn everyone else play...but im so hungry and determnined that when i am able to play at life again....il really be able to make it count....god bless and i wish a steady and strong but FULL recovery to all people in this situation....id love to speak with any other sufferers...and i wud be happy to exchange e-mail/facebook if anyone is interested...
ReplyDeleteI am making my way thru your posts. I find it very interesting to read your entries because you suspect adrenal failure because you are aware of it. Since this condition/disease is so very rare that it is usually an uphill battle. I have been near death, comatose several times due to medical ignorance. If you've never even heard of adrenal failure, such as my case nearly 10 years ago when diagnosed with Addison's. I was about 33 years old and had actually coded while in the hospital with them having no idea what was wrong - but I was on cardiac floor because often this disease manifests itself as if it is a heart problem. A code was called - I must have been on God's mercy-list because the next day they finally did testing that would confirm the cardiologist's brilliant guess. I was one very sick gal on the verge of death, so I am glad you are aware. But, it's still a battle...
ReplyDeleteLana C.
Very reassuring to hear that improvement IS possible. At the moment I am trying to figure out whether I am experiencing withdrawal or a relapse in adrenal exhaustion. I'd also be interested in connecting with anyone going through this or having experience with this.
ReplyDeleteIf any of you are still around---I am struggling with adrenal insuff after Prednisone and am now on hydrocortisone unsuccessfully trying to taper. How do I know if I'm on the correct dose? How do I know when it's safe to taper? My AM cortisol was 1/10th the lower limit of normal.
ReplyDelete~Ana
This was a god-send to find. I have spent the better part of the last 5 months in bed since having two surgeries and getting Facet Joint Injections for Chronic back pain. Apparently, those Depo-type injections were enough to tell the Adrenals to go on snooze, while I was taxing the hell out of my body with these other physical (unrelated) ailments. So, when I finally went into crisis, it felt soul sucked and still do even being medically managed. I barely want to see the next day and it seems anything I can catch, I do. So, I feel a little more normal reading words that could have come from my mouth.
ReplyDeleteLori
Hi, it is amazing how similar all the conditions are. i am currently withdrawing from injections of steroids. I have severe a insufficiency and any excertion on my part is costly so when my daughters and their families 4 grandchildren 2yr 3yr 7yr 8yr were here for weeks i had to take 150 mg a day to at least go to the pool with family and family had do everything while here. now that i am withdrawing i feel worse than ever but i too am staying out of the hospital this time!!!!!! I have a wonderful endoc. and I can fax her anytime with an update or ? and I always hear from her or her office. I am in the hosp 2 to 3 times a month and i have had it is a terrible strain on my husband who never complains. I will be on steroids for the rest of my life because my glands no longer function damaged from neurosarcoid lesions. what can we do???? hang in there everyone! Thanks for listening.
ReplyDeleteI was indeed looking for info on google because since last weekend, I have gone into severe adrenal insufficiency. I weaned off hydrocortisone at the end of April 2012. For the first several weeks, I constantly suffered from heart symptoms, irregular beat, skipped beat etc. I jumped off from the last 5mg at the wrong timing when my co-worker had to be induced labor and I ended up doing two people's work, constantly working late. I took a lot of potassium and it seemed to work. Although it was hard then, I have to say the adrenal insufficiency I am suffering now is worse, I have become non-functional, can't work today, did not sleep last night. It has to do with me thinking I don't have the problem anymore. I continued to work long hours and was starving myself many nights until I got home to eat. I probably have drained my adrenal reserve. Last night, my blood pressure was low, i was constantly woken up by irregular beats which compensated the low blood pressure. At 3am, I woke up again and felt very nauseated. Given the experience you have, do you think I should go back to hydrocortisone? I still have pills, but really do not want to go through this again. On the other hand, I do have to work. I appreciate suggestions / advices. Thanks. Ruby.
ReplyDeleteThank you for this info! I was on a short course of prednisone (20 mg for 7 days), thanks to a cold aggravating my (normally well controlled) asthma. The doctor mentioned nothing about weaning myself off of it, but the Sunday when I was supposed to stop I began feeling ill -- dizziness, lightheadedness, nausea, the works. I managed to take the dose until I saw my doc and she advised me to wean myself off of it -- basically go down 5mg every three days (so 15/10/5, and then stop). I experienced much the same weaning as I did when I stopped taking it, but once I got down to 10mg, it wasn't so bad.
ReplyDeleteIt's funny though - last Sunday (April 14) was my last dose (5mg). You'd think tapering off something that low wouldn't be too bad. And from Monday-Wednesday, I was fine. Wednesday night I start feeling mild flank pain (and indeed it's still here, off and on) and muscle pain. I didnt think withdrawal symptoms (for what else could they be?) could manifest three days after stopping!
But basically I want to thank you for this detailed information, especially how to differentiate between steroid withdrawal and adrenal insufficiency -- considering that I had effects after trying to stop a low, short term dose, I was potentially worried about having some sort of adrenal crash -- knowing the symptoms of each one makes this a little easier to distinguish. Especially since this is exam time for me -- I can't afford to just crash (not until next Monday!)
I hope you're feeling okay too, since you obviously have it much worse than I do! Thanks for your time.
- Tiffany
I am SO glad you wrote this, thank you. I wish I'd read it a year ago, I may have just wasted the past year of my life housebound for no good reason.
ReplyDeleteHello: I am interested to hear more from anyone who has experienced flank pain around kidney/back area when they are reducing their dose of prednisone. I have been on steroids (80-15mg/day) for over two years for an autoimmune condition. I am now taking 15mg/day...on a slow taper under rheum directive and monthly blood tests. I recently had terrible flank pain which I have never had before. It took me to ER 4 times in 5 days. There I was given pain control and an antibiotic for a kidney infection. After completing the antibiotic meds, I still had some flank pain. I wonder whether it has anything to do with tapering my prednisone dose. Any comments, please?
ReplyDeleteyes.My husband has been caught up in this visous cycle for three years now.I am afraid that i'm going to lose him to all this bullshit.He has an auto immune condition the doctor was trying to fix too.He started out with Crohns disease of 25 years and then she slammed him with so many varous kinds of steroids at the same time,the adreanels are not producing any cortisol on his own now. That flank pain that you are talking about has been like a knife in his side from the very beginng of adrenal failure.His heart rate is so high that i am afraid of a heart attack at any moment,and he has lost all control of retaining water in his body.He takes tablespoons full of sea saly one after another to no avail. I can not tell the difference between adrenal failure or adrenal crisis.The steroids actually make the gut pain worse than ever and he appears to be near death right now as i speak. Totally lost.
ReplyDeletePrednisone..uggh! I just want to be rid of it but fear after 30+ yrs its just too late late for me. In the past few yrs I have had or experienced nearly every long term side effect of this beastly drug. I have suspected adrenal insufficiency as well...can you have this with cushings at the same time? I had to quit my job last yr. somedays its hard to get out of bed even my feet hurt when not on them?? I have been to the wastelands as you describe and have also been in the ER with violent episodes of vomiting and diarrhea and no one can tell me what is wrong the give a bag of fluids and send me home. Ea. time I try to cut back even by the smallest amounts the pain is excruciating. Would give anything to see an endocrinologist but will have to wait till april when I have some health coverage. I am sure my adrenals are atrophied but still am hoping I bring them back. Thank you for letting me vent.
ReplyDeleteWow! I want to thank the person that started this blog. I thought I was totally alone with all of this crap. I was on bio identical hormones both before and after menopause. They helped a great deal until the pharmacist screwed up my prescription and overdosed me........and not just by a little. At first, I had no ideas what was going on. I just got weaker and weaker and couldn't sleep until I completely collapsed Christmas Day of 2010. This went on for ten months until I went to a "hormone specialist" that finally did tests and found my levels were the low end of what a male should have. He took me off cold turkey and I had a Secondary Addison's reaction. Thank god I had a primary care doctor that even knew what that was. Even still he did not have a clue how to treat it. When they tried to put me back on the hormones I developed blood pressure spikes, severe anxiety and heart palpitations. I hardly slept at all for the better part of the first two years. I was on the couch for what seemed like forever. Then I saw another "specialist" that told me he could regulate me with hormone pellets. The first two months on them were hell, but then in the spring of 2012 I finally started feeling like myself again and sleeping better. The problem is that the large dose they give you only creates a false sense of security when your adrenals are crashed. The minute I had any amount of stress (I moved that summer) I would completely crash. I was down in bed.....alone (no family) my hair was falling out and I couldn't even walk to the mailbox without my heart racing over 100 bpm. I slowly crawled out of that whole only to find that the estrogen pellets had cause a 3 cm fibroid to more than double in size. My OB/GYN insisted I not have another estrogen pellet inserted. The damn doctor had no idea how to give me an oral equivalent dose. My lining had thickened so much that when the pellet wore off, I had a withdrawal bleed so bad that I ended up in the hospital for three days. They had to call the crash unit as I lost so much blood so fast my blood pressure dropped to 47/26. I had to have a transfusion, but the high dose of estrogen that they gave me to stop the bleeding only caused the fibroid to grow more. So initially the bleeding stopped until the estrogen levels dropped again and I started bleeding heavily again for two months. I was scheduled for a hysterectomy in January of 2013, but I knew I was WAY too weak to survive major surgery. I was so fed up with doctors by that time that I found an herbalist that put me on a tea and over a month the bleeding began to slow down and almost completely stopped five days before the surgery. I had the doctor do an ultrasound and the fibroid had shrunk 2.5 cm. I was able to cancel the surgery and I slowly weaned myself off the most of the estrogen with only some light bleeding and spotting each time I would cut the dose. Four years later I am still battling with chronic fatigue. I have not been able to work as my energy is very unpredictable still. I had to go on Trazodone to help my sleep, as I still suffer from insomnia even though my blood pressure had regulated, the heart palpitations are gone and I usually only have mild anxiety. However, we are having trouble finding the right dose of Trazodone that gives me enough sleep without feeling like a complete zombie the next day. If I cut the dose.....I only sleep a couple of hours like last night and then I am completely worthless again. As a once HIGHLY functional person......it is very hard to be this isolated and have "friends" completely disappear. Mentally I am really running out of coping skills even though I am able to get out to swim a bit and run a few errands......I am then totally wiped out. Sorry to go on here, but this is serious stuff that these doctors are clueless about. Please warn women in particular about finding a good hormone doctor and not just some hack job that took two course on hormone replacement.
ReplyDeleteI've been on prednisone for over a year. started at 20mg and got down to around 10mg without issue. trying to cut it further brought back polymyalgia pain. kept uping the dosage then cutting again. Now I am at 4.5 and trying every other day. No polymyalgia pain but all the other symptoms you are talking about...mostly tired tired tired. All the symptoms you described. Anyway, how can I tell if it's adrenal crisis or polymyalgia withdrawal. I don't feel well at all, but I don't feel like going to the hospital either.
ReplyDeleteack. same here yall. (mostly)
ReplyDeletebeen on pred for over three years, have slowly tapered down to 2mg & feel beat down.
im confident i can get over it though.
hopefully.