Posted 8/14/2008 4:35 PM (GMT 0)
ImAud, (love the name, btw), I'm still relatively new to the treatments, too. I've had mild CD since high school, but was only DX'd last October. Unfortunately, my GI took the typical start-at-the-bottom approach of treating it; use the most mild meds, and then go up the drug pyramid until something helps. There's been alot of new research showing that this technique isn't the best way. Some Docs are now starting with the high powered stuff right off the bat. With how severe your symptoms are, I wouldn't hesitate in talking to your Doctor about more aggressive therapies. After years of being a "sheep" (that being, "Yes, doctor, whatever you say"), I have learned that the best way to insure the best health care from your doctor is to educate yourself about your disease, and then taking an active part in your treatment. Don't just sit there and suffer after bleeding and cramping all day. Get on the phone.
I'm not a Doc, so please keep that in mind, but... Typically, high doses of steroids (prednisone, etc) are usually used to get the severe symptoms under control fast. High doses ranging from 40 mg/day on up. If your current dose of steroids isn't helping (usually they help within four days of starting them), then talk to your doc about the possibility of increasing your dose until it does. You'll need about three days to see the benefit from changing to a higher dose.
After the steroids get your symptoms under control, your doc will put you on some sort of "remission maintenance" drugs for long term use. Steroids *can* be part of that treatment, but usually at much lower doses. Usually, Docs will put you on some sort of mesalamine (like the Asacol you mentioned), but there is much controversy over whether or not mesalamine actually helps CD. In my case, it didn't. Mesalamine is the very lowest, most mild treatment there is for CD.
In addition to a form of mesalamine, your doc will probably put you on some sort of immunosuppressant or immunomodulator: Imuran, Azasan, 6MP, Methotrexate, Humira, Remicade, Cimzia, etc. etc. These are the Big Guns of long term therapy, and the ones used most often in more severe cases of CD. The problem is that most of them (methotrexate and it's relatives excepted) take quite a long time to take effect. Most docs will keep you on a moderate dose of steroids to keep you in remission until the long term drugs have had time to take effect, then they will taper you off of the steroids. My doc kept me on a minimum of 20 mg/day of prednisone until the long term meds took effect. Unfortunately, I'm still having to take the 20 mg. day of pred, but hopefully you won't have to. I would *seriously* question my doc if he was just going to give me steroids for a month and then just take Asacol after the steroids were gone. Especially if my symptoms were as serious as yours. There just isn't much chance of you maintaining remission from Asacol alone. It does happen sometimes, but not very often. Again, I'm NOT a doctor, I'm just going by my own experiences as well as those here and on other CD related sites. Just don't be surprised if your symptoms return after your done with the pred and he's just having you take asacol.
The very best advice I think there is when it comes to CD: read, read, read, read. Everything you can find about it. Educating yourself about this horrid condition will greatly improve your chances of finding adequate treatment, and helping your doctor decide what treatment is best for you.