I'm a 22yo female with myelodysplastic syndrome and was started on a course of 60mg prednisone 3 months ago which has successfully been treating an autoimmune condition that was attacking my bone marrow(yay!) I'm now being tapered off -currently at 15mg and have been struggling with the withdrawal symptoms (boo!)
I've had all the usual side effects of prednisone; the cushings syndrome, acne, bloating, moon face, mood swings etc but up til now i had tons of energy (the only good thing about the drug) and now the dose has been lowered, i literally cannot get out of bed i'm so exhausted.
From the moment i wake up, i find it extremely difficult to get out of bed and have been feeling very depressed. I've tried making myself go for walks or just sitting outside more often but it doesn't seem to be helping with my energy levels at all. i actually miss being on 60mg of steroids and waking up at 4am feeling like i'm ready to run a marathon!
I guess I'm a bit confused about what the best thing for me to do is. Should i just give in, accept it's part of the side effects and let myself stay in bed for the next few months (which by the way is not as fun as it sounds) or is there something i can do to help myself?
here's what I've been doing: winding down at night time, low level lights, sleeping in the dark (not complete darkness though - still need to get a blackout blind) i wake up around 5am, then sleep again at 7 til about 9.30. have breakfast (eg, bacon omelet) and take my steroids, then a small snack around 11 (eg, some leftover meat) with an emergen-c (1000mg vitamin c), lunch at 1pm (eg, chicken casserole with bone broth) and vitamins - d3 4000iu, 1g fish oil. i take another emergen-c sachet about 4 and for dinner i usually have a steak with vegetables or sometimes sweet potato. then i take a magnesium/calcium supplement before bed, start to wind down around 8. asleep before midnight. my carb intake is around 80g a day (i have PCOS so want to prevent insulin resistance but don't want to go too LC either and add stress), i eat mostly fat (about 60-70% and mostly coconut oil or goose fat in cooking.) i have recently upped my sodium intake a little to see if that would help (it hasn't.) i've also been trying to chill out as much as possible, watching comedies and doing things that relax me.
Are there any other hacks i can make to my diet/lifestyle to help ease these withdrawal symptoms, get some energy and help heal my adrenal glands? thank you for any advice... and sorry for the long post.
UPDATE: For the past 5 days I have made some changes and am quite pleased with the results. As soon as I wake up in the mornings I get as much sunlight as I can. I've upped my vitamin D supplementation. I try to spend the majority of the sunlight hours in natural light or outdoors, going for walks etc. I admit I had to really push myself to get out of the house more at first, but now I'm feeling better for it. I am planning on buying a blackout blind but for now I have been wearing an eye mask and have had better sleep. I've got a lot more energy during the day, although I'm still a bit tired and my mood has been MUCH much better. I can safely say I feel a lot less like death :)
asked bySnufkin (291)
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on December 03, 2011
at 04:50 PM
I have a blog in the que about this. Here is an early nugget for you. When we neurosurgeons use steroids for any reason on a short term basis we have some clinical tricks that quickly demolish the chronic effects of these drugs. The key to simultaneous supplement "whopping" doses of Vitamin D3 for about two weeks and make that the patient gets into exposed sunlight as early as possible in the AM. You must do both to get the effect. Sunlight on the retina is the best direct down regulator of cortisol production from the brain and adrenal gland. Hope it helps you.
on December 03, 2011
at 04:45 PM
Man, that's a tough spot. Your determination to get through this is your best weapon it sounds like. Many years ago, I went through a similar thing when doctors threw too many drugs at me.
I finally got off all of them but it did take a while for my system to rebound. Oddly, what helped me (it might or might not be what you need) was to relax and let myself believe I was getting better rather than worrying about my symptoms. I got so used to being really sick that it became my "normal."
I wonder if fermented, probiotic foods would help your body rebound from the attack of the drug? If you feel that tired, you're doing the right thing to rest but can you comfortably get some sun in the warmest part of the day (assuming you're in the northern hemisphere) and are there little ways you can baby yourself to relax and let go of all the symptoms you're going through?
I'll come back to see what people experienced with prednisone have to say; in the meantime, take care of yourself and I hope you're better soon.
on September 04, 2013
at 07:27 PM
I have been taking predisone 10m for 3yrs. for poly-myalgia>I am having serious health issues.Weight gain,joint pain,severe depression,and I have developed ulcers in my stomache.I have already learned so much from this blog sight!I will be signing up so I can post also!!Trying to wean below 10 is seeming an impossible task!
on August 11, 2013
at 11:28 PM
I started at 15mg prednisone for an acute attack of polymyalgia rheumatica (it worked dramatically within hours), stayed on it for a few weeks, and am now tapering down at the rate of 1 mg every four days. Initially, I felt well. I am now at 7 mg and feel exhausted. My story is insignificant compared to others on this blog, but it would be comforting if someone else has experienced recovery after completing the taper.
on May 08, 2013
at 03:19 AM
I have an extremely rare type of auto immune disease called Juvenile Dermatomyositis & have been on too many meds to keep track of. I started with Prednisone at 60mg and i am currently at 10mg. I had all the side affects...moon face, major edema, increase in appetite that led to me gaining around 50-60 pounds. I was 15 when that happened. Im 17 now & am still struggling with the Pred. I've had a complete change in my disposition & i'm on anti-depressants to help with that. The only thing i can say about having bad side effects is that if it makes you feel like crap tell your doctor. It's YOUR body so if you feel like somethings wrong then ask. I had bad reactions when i forst tapered because they tapered it by too much. Everyone's reaction to Pred is different so there is no "norm" for any of that. Go off of what you feel but also consult your doctor. Stay Positive <3
on March 26, 2013
at 04:16 PM
My doctor put me on 60 mg of Prednisone short-term for Bronchitis. I was on for 5 days and not told to taper. On the 6th day I could barely move - I had gone from 60 mg to none. It took about half the day for the fatigue to kick in, though. While on the prednisone, I felt incredibly good, despite the bronchitis.
So I called, and let the doc know. She then gave me a script that was 40 mg X2 days, 30 mgX2 days, 20 mgX2 days and 10 mgX 2 days and then none. I'm at the 20 mg and am feeling terrible. Tired, cranky, joint pain, fatigue, lack of concentration, bowel issues, etc.
I'm normally an extremely healthy person. I'm 51, and this bronchial bug blindsided me. I think the Prednisone was prescribed because my illness was so awful and I needed to work - I'd missed a lot of work.
Am I being tapered down to fast? Is it normal for me to feel this badly with a taper such as the one described above?
Thanks for any insight!
on March 21, 2013
at 09:34 PM
I was diagnosed with Crohn's in 2011. I have been vigilant with what I eat and have been active over the course of the two past years, however I had a flare up in Nov 2012 which sent me to the hospital for few days. Doctors started me on 40 mg of prednisone with inital taper of 5 mg/week and half way through the taper was more slowed down to 2.5mg/ or half a pill. I had a belly ache when initially taking prednisone (was bloated), moon face developped, waking up in the middle of the night with sweats and I had some strange mood swings. When I got down to 2.5 mg a week, I had a flare up that sent me to the hospital again. Doctor's put me back on 10 mg to taper by 2.5mg. I screwed up with with doses and went from 10mg to 5 in a week and the rest I tapered down which ended last week. I am taking Ca/Mg, fish oil and 1000IU of vit D in the morning and Ferrous gluconate in the evening. I am still doing low residue diet. So far things are going well.Energy seems to be so so but I'm more happy being off this drug. My next GI appt is in May.
on March 18, 2013
at 09:35 PM
I've been on prednisone for 22 years as I was diagnosed with Crohn's disease at age 5. I'm now experiencing alot of the long term side effects For a number of years, I have had aching joints - particularly in cooler weather. My lower back, wrists, and knees are the main joints that ache. I lift weights 5 times a week, and have done this for the last 6 years, and this has kept my bones and muscles strong. Pushing myself to exercise is especially important in times of fatigue and low energy. As long as I have ben eating, I push myself to complete a workout and always notice the benefits. What I have noticed though, is that if I stop training for more than a week, my energy levels drop dramatically, and my joints start to ache and tighten up.
More concerning for me is the other unknown side effects that are starting to become evident. I have battled through bouts of depression and anxiety for the last 3 years which are noted side effects of prednisone. In the last three months, I didn't even realise that I was depressed because the change in my mood had become normal to me.
As such, I've really been focusing on my diet over the last few weeks, and have added a number of 'superfoods' (berries, carrots, omega-3) that have helped with my anxiety and depression, and over all feeling of well being. I feel like I have a lot more energy, and that my health is on the improvement again.
Therefore, my advice for anyone tapering off this drug, is to look at what can be improved in your diet. Book an appointment with a dietician and a naturopath, as they will both be able to aid you in improving your diet to obtain maximum nutrition, and eliminate all of the not so good things out of your diet. The naturopath may also help you choose the right supplements so as to keep you off medication for good.
I am seeing an endocrinologist in a week to start working on a plan to get me off this drug permanently. I have tried in the past, but only under the supervision of my gastroenterologist, and once I went below 9mg, I had a flare up with my Crohns, so hopefully we will be able to find a successful solution.
on February 15, 2013
at 11:55 PM
I've been on 40 mg. of Prednisone for 4 months, I have tapered down to 24 mg. I'm now having extream fatigue and can hardly move, the doctor wanted me to tapered down 2 mg. a week, does anyone think this is too fast? I need help!
on January 18, 2013
at 01:29 PM
I'm right in the beginning of this myself and it pretty much sucks. I'd been on it on and off for a year with dosing packs. I actually convinced myself that it improved my quality of life. My dosage recently went up to 100mgs daily. Now I'm on a doc ordered taper, but it has me going from 100 to currently 25mg in 6 days. The lower doses will be a much slower taper, but my body hurts everywhere, even my teeth. I'm trying to decide how quickly I should start exercising, so I don't just lay around, which will only put me back to square one with my arthritis, etc. Btw, I'm 33 and had childhood bone cancer. I have a bunch of chronic pain issues, and I also developed Adrenal crisis, although my fam doc hasn't sent me to an endo yet. Anyone have anything to add about trying to exercise. I've already been walking about 5 miles a day because the med makes me, but I'm talking about more physical activity like Crossfit.
on January 02, 2013
at 12:57 PM
I hesitate to blog, because my problem seems trivial compared to others, but I have been on 15 mg Prednisolone for 6 months, and have tapered at 1 mg/ week down to 8 mg: that's One 5 mg + 3 three one mg . Then I made a mistake and omitted the 5 mg tablet- for the last 2 days. I do not feel too good, but I have osteoarthritis and my surgeon does not want to operate while I am on steroids, and the muscle pains and so on I have are like those of arthritis. Any suggestions as to what to do?
on October 10, 2012
at 06:57 AM
I would seriously try to taper for as long as you possibly can. Getting off of prednisone can be really tricky. Write down your plan with tapering all the way off of prednisone and than stick to it. Even if the side effects are really bad, you do not want to have to get more prednisone only to get more addicted.
on December 04, 2011
at 07:28 AM
Hi, Snufkin. Yours is clearly a complicated case. You need to be working closely with your personal physicians who know all the details of your case. Regarding your extreme fatique/weakness, it's possible your doctors are tapering down the steroid dose a bit too quickly. There are at least a hundred other possibilities.
-All matters regarding your health require supervision by a personal physician or other appropriate health professional familiar with your current health status. Always consult your personal physician before making any dietary or exercise changes.
on December 03, 2011
at 04:57 PM
Start playing around with powdered/pilled licorice to recycle whatever endogenously produced cortisol you have left. I really feel for you. I take 1 tablespoon of powdered licorice a day for my adrenal fatique plus 1/8 teaspoon of panex ginseng. There is very little info on mixing cortisone/prednisone and licorice on the internet. I tried different ratios for a while. 5mgs cortisone + two teaspoons of licorice, 10 mgs cort + teaspoon and a half of licorice ect. Of cource predneisone is 4xstronger than regular cortisone.. Wow 60mgs of prend. That's 240 mgs of cortisol. Every time I try to lower my licorice I have failed. It's my only issue left. It is a bitch. So in the end, it may be easier to get off the licorice than the prednesone. But I am not a good role model on this issue. YET! Being addicted to 1 tablespoon of licorice does not qualifiy me for an AA type meeting!, but it shows that my complete recovery is not yet attained .