medication management for new diagnosis of Crohn's

Hi Gumby,

I'm not an expert but wanted to say welcome. Others will chime in with much more experience, but my first impression to your story is that your doctor seems to be cycling you on and off the medicines pretty quickly. Sometimes, people stay at the same rate of prednisone for a week or more, and taper much more slowly to keep the inflammation under controle. Also, Pentasa -- not best to use it for "quick" fixes -- most stay on it for awhile. The cycle of D and C is definitely a challenge and it's hard to figure out how much is the CD and how much is the meds.

Good luck!

Again, this is just my own very limited experience, but I do think your GI should be providing you with information about how the meds work best.
I was diagnosed in early September and was in the hospital for 8 days. I started on IV steroids, and was released on 40mg orally. Now, two months later, I'm still on 20 mg. and will be at least through November so my taper is much, much slower than what you are experiencing. I take Prilosec (a proton pump inhibitor) too even though "heartburn" is not one of my issues. (My GI adds Prilosec for all his patients taking steroids.)

I do have trouble with constipation, but I also have frequent bouts of D still, so my doctor doesn't want me to taper off steroids more quickly. I have other steroid side effects that are harder to deal with (mood swings, water retention, insomnia, etc). I take Colace (a stool softener) on days when I'm constipated and it helps a little.

I started the Pentasa in the hospital and have continued at the same dose -- 3000mg (3 pills, 4 times per day). No plans to reduce this.

As others on this forum have said, the diet really helps too. For these first few months, I have eaten a low residue, low fiber diet. No caffeine, no dairy (except yogurt), no artificial sweeteners. At the beginning it was more limited -- mostly soups, purees, really soft foods. Now, it's more regular, but still low residue. There are some studies that show using this type of diet is as effective as steroids for reducing symptoms of CD. So, if you're still having symptoms, I'd definitely try restricting your diet, and see if this, in conjunction with the meds, gives you some relief.

From personal experience, the prednisone made my heart race REAL fast. I was a distance runner who had a resting heart rate of around 37 bpm, on 80-40 mg of prednisone it was over 100 bpm. Until my surgery, I used this to work out (on prednisone, you may feel foggy tired, but you can go for ever without muscle pain...hence it's a banned substance in most all sports) to use up all that extra energy.
I too was scared of the immunosuppressants, but it does help. Oh, and I have a love hate relationship with the steriods...but my intestinal tract is much happier on them.
Hopefully you can go into remission soon. I know I was for about 3 years after my first big flare and original dx. Here's hoping a short term only with the meds and a long remission.

Hi Gumby,
I'm pretty new to all of this too. I guess I have been luckier than some others on the boards here and seem to be(more or less)in remission-I think it's all relative. I got sick with what I thought was the stomach flu back in February this year. After a few weeks and dropping 10% of my body weight, I figured it may not be the flu and saw my doctor. I was quickly referred to a GI doc and was quickly scheduled for a colonoscopy after which I was diagnosed with CD, put on 40mg/day prednisone to start with. I did not have the racing heart side effect, but I had many other nasty side effects including night sweats, insomnia, muscle cramps in hands, dizziness, confusion, difficulty speaking and maintaining a thought without having my mind wander, and personality and mood changes. But it worked. The bleeding was reduced, my appetite returned, my weight loss stopped. Fortunately after I was weaned off of the prednisone and started on pentasa which I have been on since. For a while, my diet consisted of oatmeal in the morning, creamy peanut butter and seedless jam or jelly sandwich, and roll the dice for dinner and hope it wouldn't hurt too bad. For now, I can eat most of what I used to, but still have the occasional bad days(or nights) and can not get rid of the constant discomfort around the appendix area. But, I feel relatively lucky. Things could be a lot worse, and at least I can still work and get around well. One thing I have learned from reading a lot of posts around here is that one of the sucky things about this disease is that it affects everyone differently and so can what you eat.
Good luck to you