Diary of a Crohn’s Flare: Prednisone (my arch nemesis)

Since 3/17 I’ve been on an extremely high dose of prednisone (60 mg/day for a week, then 50 mg/day for 3 weeks, and 40 mg/day since then).  The prednisone is supposed to help reduce inflammation which the doctors think is causing my eating problems.

My eating problems consist of whenever I eat anything (low-reside or even fluids), my stomach bloats tremendously.  My waist gains 4 or more inches from this bloating when it happens.  After bloating my gut begins to hurt a great deal and all movement in my gut slows down or even stops for a while – it’s like having a partial small bowel obstruction every time that I eat.  It’s made worse when I eat a lot.

I haven’t had to take prednisone in a very long time, since 1998.  During my Crohn’s flares of that period I had been on prednisone for up to two years at a time.  I suffered from all sorts of symptoms from the prednisone and actually came to almost feel physically ill when I had to take it (because I knew it was causing many of my issues).

As I learn my new “rules” for handling my Crohn’s flare, I thought I’d also write about how I’m dealing with the prednisone on this go around.  Here’s a list of common and severe side-effects of prednisone from NIH.

Common

• Headache
• Dizziness
• Difficulty falling asleep or staying asleep
• Inappropriate happiness
• Extreme changes in mood
• Changes in personality
• Bulging eyes
• Acne
• Thin, fragile skin
• Red or purple blotches or lines under the skin
• Slowed healing of cuts and bruises
• Increased hair growth
• Changes in the way fat is spread around the body
• Extreme tiredness
• Weak muscles
• Irregular or absent menstrual periods
• Decreased sexual desire
• Heartburn
• Increased sweating

Severe

• Vision problems
• Eye pain, redness, or tearing
• Sore throat, fever, chills, cough, or other signs of infection
• Seizures
• Depression
• Loss of contact with reality
• Confusion
• Muscle twitching or tightening
• Shaking of the hands that you cannot control
• Numbness, burning, or tingling in the face, arms, legs, feet, or hands
• Upset stomach
• Vomiting
• Lightheadedness
• Irregular heartbeat
• Sudden weight gain
• Shortness of breath, especially during the night
• Dry, hacking cough
• Swelling or pain in the stomach
• Swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs
• Difficulty breathing or swallowing
• Rash
• Hives
• Itching

Of these, I dismiss the swelling or pain in the stomach as due to the Crohn’s and don’t attribute it to the prednisone.

Here’s how I deal with the rest of them:

Problems sleeping:
I’m now taking the prednisone in the morning rather than the evening.  I’ve seen it suggested that this will reduce the impact of the prednisone on my sleep cycle.  So far, I haven’t noticed an improvement; however, I have noticed that my night sweats have reduced in severity and frequency.  These also interrupted my sleep cycle so that’s a minor improvement at least.

Acne, hair growth, & increased sweating:

I just deal with it.

Muscle weakness & fatigue

The fatigue for me is a general sense of exhaustion.  I get done with the day and just don’t feel like I can do any more.  So far, I have been able to force myself to go for runs on days I’ve decided to do so.  So far, the fatigue melts away after a half mile or so of running.  The fatigue hasn’t prevented me from doing a run but it takes a lot more will-power to do workouts when I’m on the prednisone.

The muscle weakness is a problem though.  Before the prednisone I could run stairs three at a time.  After the prednisone it is extremely difficult to take the stairs 3 at a time.  Sometimes even taking those 2 at a time is a challenge.  About the only thing I can do for the muscle weakness is to go ahead and exercise them when I can.  This means taking the stairs whenever I can and running the stairs 2 or 3 at a time.

Dizziness & lightheadedness

In general, this happens to me more frequently when I have been doing vigorous activities (although sometimes it just spontaneously happens without me doing anything in particular to cause it).  There’s not much I can do for it other than to try to not drive or switch drivers when it happens.

When the dizziness / lightheadedness occur due to physical activity, I’ve found that a “fuel” (like Gatorade) helps me.  Now I am taking some Gatorade with me for any work out activities; even walking or weight lifting that didn’t require fueling before.  This helps me a lot.

Shaking hands

I do not know why prednisone can cause shaking hands, but this has happened to me about 4 times over the last 6 weeks or so.  My hands and arms shake/tremble 20-30 minutes.  After a while the episode dies down and I feel normal again.  Not sure what I can do about it.

Swelling, tingling, pain, and numbness in the various extremities

The prednisone causes swelling (edema) in my lower legs plus pain and numbness in my legs, feet, arms, and hands.  My face also swells (the moon face) and I get puffy around my eyes.  I believe all of these symptoms are due to the water absorption in the tissues.

My understanding of this is that prednisone causes your body to hang onto sodium and get rid of its potassium.  To counter-act this effect, I’ve begun to reduce my sodium intake and increase my water and potassium intake.  I now take 4 (OTC) potassium tablets / day.  I also have a prescription for a diuretic that should help reduce the swelling in my legs (I took my first one today).  Diuretics also tend to cause you to excrete potassium so it’s important to take some potassium supplements to replace the potassium that you lose.  I’ll write again later about whether the diuretic helps with the tingling, pain, and numbness (my recollection is that it does help).

You can or should also try to put your legs up when you have an opportunity.  This will help reduce the swelling some.  I’ve also heard that exercise helps your body naturally reabsorb the fluids from the tissues in your lower extremities.

So far none of these things has magically eliminated the problem, but each of them seems to help reduce the immediate symptoms of the problem.

Vision problems

I find that my eyes lose the ability to focus when taking prednisone.  After sitting all day working on a computer I find it exceedingly difficult to focus on anything at a distance.  This was happening to me normally due to my age but the prednisone seems to accelerate the problem.

What I plan to do is get my vision tested and get a pair of glasses but I haven’t had the opportunity to do this yet.

Cramps
Specifically leg cramps.   The potassium and water that I'm taking to help with the swelling also helps reduce my leg cramp problems.  I have had only very minor issues with leg cramps since I started taking prednisone for this flare.



Something I realized after initially writing this entry is that I'm taking prednisone to control my Crohn's flare, yet every time it actually gets those symptoms under control, I reduce my dosage and the symptoms recur.  I've spent almost all of the last 6 weeks feeling like I have a partial small bowel obstruction.  I've only had a few days of feeling almost normal in that entire time.