Prednisone Hangover - Not curable with rest and gallons of water

Good Day All, 

I am 7 months post ileostomy surgery.  Thankfully, the surgery and recovery went way better than I expected.  Since that time though I have developed achy joints, stiff fingers, fatigue and even stumble a few times a week getting out of a chair.  I figured that was just part of getting old.  I work part time and enjoy a weekly round of golf.  The problem is that a few hours before leaving for such activity I'm tempted to call in sick or cancel my plans.  At the time, sitting in front of the TV seems to be a better idea than leaving the house.  I began worrying that now only is my body weakening but so was my mind.  

I was talking with a friend who recently had the same surgery as I.  He too was achy and fatigued.  We both talked about the "Wonder drugs" that we tried over the years.  He had been on Prednisone on and off for 12 years.  I had been on it on and off for over 15 years (at one time for nearly 7 years straight).  His doctor had told him that he needed a few months to get over the Prednisone withdrawl.  He was a little down after I told him that I'd been off Prednisone for a year and a half and not noticed any change.  The conversation was productive though in that I realized that I don't have to blame my malaise on old age!  I was suffering from a Prednisone Hangover!

I am writing this to hopefully help others who have been on this drug and not understood its effects.  Over the years I had discussed side effects of Xelganz, Remicade, etc with the docs.  I had read about all the problems that UC presents.  I had never really been told about Prednisone.  It was always the drug to go to (temporarily) when one of the major drugs stopped working and I needed something to get through the day until the next drug was approved.  It seemed to help so I didn't mind taking it for such a long time.  I contacted my doctor with my concerns and this was her reply.  

Yes, coming off prednisone is like coming off heroin. People feel irritable, achy, trouble getting up out of a chair, difficulty sleeping, etc. It gets better over time, but the longer you are on prednisone, the longer it takes for the symptoms to resolve.
I recommend exercise daily to help. Here is some info on fatigue as well.

Understanding Fatigue in IBD

Why do IBD patients feel fatigued?
Fatigue means that you feel so weak that you have difficulty starting or maintaining physical and mental activities. Fatigue is one of the most common symptoms reported by patients with inflammatory bowel disease (IBD) and can keep them from doing normal activities such as going to work, exercising, studying, and caring for their family. It affects nearly 50% of patients whose IBD symptoms are under control and?>?80% of those with active IBD symptoms, resulting in decreased quality of life and causing them to miss work. There are many different reasons that patients with IBD have fatigue including active IBD, poor nutrition, and mental health disorders. There are still many factors about fatigue in IBD that we do not know.

The good news is that about 20% of patients will feel less fatigued after abnormal lab tests are treated, and about 30% of patients will feel better after making changes to improve their lifestyle, diet, and mental health.

Diagnosis and Treatment
If you feel fatigued, your provider may want to do some tests to try to understand why you are feeling fatigued. Below is a checklist to review with your provider about your fatigue. Your provider may recommend more or less of these tests depending on your exact symptoms.
Tests to look for an IBD flare or complication
Blood or stool tests: Blood count, C-reactive protein, fecal calprotectin
Imaging tests like a CT scan or MRI
Upper endoscopy or colonoscopy

If these tests show that your IBD if acting up and is most likely the cause of your fatigue, your provider might make short or long-term changes to your IBD medications.

Blood tests to look for other illnesses that cause fatigue (sometimes related to IBD and sometimes not)
Liver tests, kidney function, thyroid tests, blood sugar levels, iron levels, vitamin D level, folate, vitamin B12 level, celiac disease testing, zinc

If your provider thinks low iron levels are causing your fatigue, they may recommend intravenous or oral iron.

If your provider thinks that you have a vitamin or nutrient problem causing your fatigue, they may refer you to a dietician skilled in counseling IBD patients.

You should discuss your sleep quality, and discuss ways to improve your sleep hygiene.

You should explore any signs or symptoms of stress, depression, or anxiety, and obtain information to help with these symptoms.

Exercise is important
If your provider feels it is safe, an exercise program that slowly increases in intensity can lead to improvements to your energy levels. I recommend you start doing aerobic exercise every day (where your heart rate goes up, your breathing gets a little faster, and you get a little sweaty). You should start by doing gentle exercise for only 10-20 minutes a day, slowly working up to 30-60 minutes a day.
Things people often try are:
(a) walking faster
(b) exercise bike or glider or treadmill
(c) swimming
(d) tai chi
The UCSF Osher Center for Integrative Medicine has many group programs for people with chronic fatigue and chronic pain, including gentle Yoga and mindfulness training. To learn more please visit their website at osher.ucsf.edu/public/index.html or call (415) 353-7700.

Sleep is important
Fatigue, stress, and poor sleep quality are all related. Therefore, getting good sleep is important as a way to relieve fatigue and stress. Follow these steps for improving your sleep hygiene:
Try not to nap during the day
Don't take substances such as caffeine, nicotine, chocolate and alcohol too close to bedtime. I recommend avoiding caffeine after noon.
Exercise can promote good sleep.
Food can cause a poor night's sleep if eaten too close to bedtime– try not to eat within two hours of bedtime to avoid going to the bathroom at night.
If you have night sweats, try sleeping on a towel and keeping a change of clothes and pillow or pillowcase close to your bedside. This way, you can clean up and get back to sleep without getting out of bed or turning on a light.
Make sure you get enough natural light during the day (sunlight).
Start a regular relaxing bedtime routine.
Associate your bed with sleep – do not spend time in your bed watching TV, using your smartphone, or working.
Make sure that the sleep environment is pleasant and relaxing – avoid having a television in your bedroom.

Fatigue can be hard to manage and it might take time to find the right interventions for you, so be patient, and continue to work with your health care providers to improve all aspects of your care.

I hope this helps explain feelings and symptoms you may have/had.  The one symptom of Prednisone that has vanished was "Pred Head" or "Moon Face".  I am the same weight that I've been for years.  Funny thing is that when I see old friends they ask what diet I'm on and mention how good I look after losing weight.  Gotta appreciate the small victories!

Have a Great Day and Good Health, 

SharkFan

Hello Sharkfan.

Thanks for a really useful post on fatigue.There are some great tips in there for diagnosis and treatment. However, from personal expereience there are a couple of points to raise which do not seem to be covered in your post. 

1) BLOOD PRESSURE: Most doctors get concerned about high blood pressure. - Mine is invariably so low it becomes a problem and fatigue is one of the effects of that.

2) POOR SLEEP PATTERNS: I would always recommend having this looked at for possible sleep apnoea. Once mine was diagnosed and I got a CPAP ( Continuous Positive Air Pressure) machine, my waking life changed unbelievably overnight. Tiredness and fatigue all-but disappeared and my mind became much sharper than that fuzzy-feeling of aging prematurely. 

It is so important to find out exactly what is causing one's problems. Once that is done, then the 'treatment' sometimes becomes obvious (and effective).

Thanks also for providing the opportunity of resurrecting a couple of my earlier rhymes on the subject: 

Best wishes

Bill

TIREDNESS.

What is this thing called tiredness
that leaves our minds in such a mess?
That saps us of our energy
’till all that’s left is apathy.

Is it physiological
or is it psychological?
Do you get tired when you’re ill
or is it part of life’s treadmill?

It seems that we could do without
this tiredness we talk about.
But is our tiredness all real
or is it ‘tiresome’ we feel?

With too much on, we’re overawed
and many things might make us bored.
It won’t take long for us to tire
of those things we don’t desire.

People can be tiring
unless one is admiring.
Sustaining a relationship
when they play at gamesmanship.

Just keeping up with their intrigue
can be the cause of our fatigue.
Tiredness is a condition
affecting all of our cognition.

So when you’re tired you will find
that tiredness affects your mind.
Then you can get in such a state
that your life stops and can stagnate.

So make a plan and find a way
to make some changes from today.
Balance out your work and rest
so you can say you did your best.

                                B. Withers 2012

TIREDNESS. 3.

My tiredness can overwhelm
to make me feel I’ve lost the helm.
Sometimes it’s like a little boat
sinking fast but still afloat.

As there’s no one else around
to this sinking boat I’m bound.
Tossed and battered by each wave
waiting for its watery grave.

All around dark clouds of gloom
intensify my fears of doom.
In this relentless stormy sea
I foresee the end of me.

I’ve heard of instincts to survive
and hidden strengths to stay alive.
Mine’s never been a half-filled cup
instead I feel like giving up.

My time has come, I can’t pretend
my tether’s come right to the end.
The pressure’s caused my will to crack
like last straw broke the camel’s back.

I can no longer have belief
that I will somehow get relief.
I’ve reached the point where I can’t cope
and now I feel I’ve lost all hope.

The more I try, the more I find
that tiredness engulfs my mind.
Every muscle I have strained
but now I’m weary, worn-out, drained.

My exhaustion is so deep
that all I want to do is sleep.
So now I will lay down my head
if I awake, I won’t be dead.

                            B. Withers 2012

Bill, 

Thanks alot for the info.  Food for thought.  Being on the Prednisone for so long caused sleep issues.  I have been on prescription sleeping meds just to get 5 hrs sleep.  That too, can't be good for me.  I'm trying to find a solution to getting off the sleep meds.  I never thought sleep apnea was affecting me.  Then again, without monitoring, who would know.  

Thanks again, 

SF

As a guy and at my age, five hours of continuous sleep just isn't in the cards.  If I took sleep aids, apnea might allow or cause me to sleep for eternity.  I think Bill's advice is good for any of us with similar conditions.

Respectfully,

Mike