Tuesday, August 21, 2012

Prednisone, part 2?

I still haven't been feeling great.  Not terrible, but not where I should be.  Due to my blood work, I can't take any more "crohns" medication right now.  My GI suggested I do a 2-3 month taper of (the dreaded) Prednisone.  I'm still thinking it over.  Is feeling better worth all the side effects?

Saturday, August 11, 2012

Medicino change up

After running around to get my Asacol prescription refilled Monday, on Tuesday, my GI took me off of Asacol.

Monday morning I realized I was completely out of Asacol.  I was taking 9-12 pills of Asacol daily.  So when ever I got a refill I'd get multiple, huge bottles, which seemed like a never ending supply.  Monday morning, I went to take some, and realized I had enough left for morning and noon doses, but no more.  I had no more in the cabinet either.  And (dun, dun, DUN) no refills remaining.  So I scrambled around, leaving a message, and sending an email to my GI.  (The one issue I have with Kaiser, is it can be hard to talk to someone in the GI department).

Mid-day I got an email from my GI saying that he refilled the Asacol, and I could pick it up in the pharmacy that afternoon.  Perfect.  I had to go to Kaiser anyway to get my monthly blood work done.

I go, I drop of my Rx, do the blood draw, pick up the filled Rx and head home.  It actually all went very quickly.

The next day, I was checking my blood work online.  My sed-rate is finally where it should be.  (Normal is 0-20, at one point mine was 92).  All the other tests looked fine, except the ALT.  The ALT basically tests for liver damage (as is my understanding), and since my combination of poisons is good to crohns, but bad for livers, they've been keeping an eye on it. Normal ALT levels should be under 36.  Last month, mine was 43, which seemed a little high.  This time it was 75 (double the max of where it should be).  Eep!  So after talking to my GI, he said to stop taking the Asacol (which I'd spent the previous day stressing about), and we'd continue the blood tests. I guess it's not high enough to cause alarm.

It's kind of nice not taking Asacol.  I went from 20 pills a day to 8. But, I've definitely felt worse in the gut area.  So I guess it was helping out.

Monday, August 6, 2012

Prednisone

Prednisone is a steroid-type drug that is used to treat all sorts of things, especially inflammatory diseases.  It's practically a panacea.

Last year, before I was officially diagnosed, I was put on a short taper of Prednisone.  This means for a week or so, I would take something like 3 pills, then 2.5 pills, then 2 etc, until there are no more pills.  I don't think at that time I noticed too much in the way of side effects, with the exception of some mania, and insomnia.  But at that time, insomnia was quite common for me.

I suppose I should mention the list of side effects, as there are many.

  • insomnia
  • euphoria
  • mania
  • weight gain
  • facial swelling
  • depression
  • osteoporosis
  • head aches
  • joint pain
  • dry mouth 
  • anxiety
  • acne
  • increase appetite
  • rashes
  • facial hair growth
  • diarrhea
  • stomach pain
  • corticosteroid dependency
  • fatty liver disease
  • ulcers
  • infections
Directly after my diagnosis, I was put on a long term Prednisone regiment.  I think originally, it was supposed to be for six months.  

I'll start with the good bits.  It did do what it was supposed to do.  It helped with my stomach pain almost immediately.  And I had a lot of energy.  So much so, that I took up running again.  That was it.   

As for the bad, well, I had many of the side effects; I bolded the ones that affected me.  It was miserable.  Here is part of a blog entry I wrote 7/16/2011:

I am so frustrated.  I hate Prednisone.  I'm pretty sure it was invented by the devil.  At this point I'll take Crohns over the Prednisone side effects.  

So it makes me angry.  All. The. Time.  The small amount of time I'm not angry, I'm sad.  I can't remember when I was last happy.  When something was funny.  Aside from all this, I can't sleep.  I take Ambien, and I'm awake two hour later.

I was going to send my GI guy an email, but he's out of the office for another week and a half.  ...
 
I slept 2 hours.  2.  And can I just mention how much I hate this?  I hate this.  I would rather have the physical illness of Crohns, than feel like I'm a terrible wife, friend, human being all the time.  

Also, around that time, I went a little crazy.  My husband and I were at a hardware store.  And I was looking at a wall of hammers.  And I thought, "I could take one of these hammers and just start smashing people's heads with them.  And no one could stop me."  It was a very scary thought.  After that I got on anti-depressants, which helped a little.  But it was just a really hard time. 

The hunger was ridiculous.  I'd never been so hungry in my life.  I was ravenous all the time.  And since I could eat without being in terrible pain, I took advantage.  And ate, and ate.  It didn't matter if I had a huge meal, I was still hungry.  Just always, always hungry.  I also gained 15 lbs, which was rough (since the only benefit of having crohns was getting skinny).

Around September, I told my doctor that I couldn't take it anymore.  It wasn't worth the side effects, and feeling like a monster, all. the. time.  So at that time I started tapering off.  I think I finished in October, but I had to get down to a minuscule dose before I started to feel normal again. 

I would consent to a short-term prednisone taper, maybe 1-2 weeks, in the future, should I have to at some point.  But there is no way I would do a longer term dose again, unless there were no other alternatives.