medication management for new diagnosis of Crohn's

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4100
   Posted 11/4/2007 3:53 PM (GMT -7)   
After six months of misery, a CT, Prometheus Blood test. colonoscopy, and camera swallow, I have a definite dx of Crohn's. My doctor is ok, but I'd love to get some of you experienced Crohn's patients' opinions on med management. On the tests, I had a 2-3 cm ulcer in my small intestine, thickening of the distal illeum and a small area if irritation in my colon. The doc started me on a medrol dose pack (6 days) and Pentasa. I felt very bloated and couldn't eat at all, so he assumed it was the Pentasa, and had me stop. As soon as I got off the Medrol, I got immediate massive diarrhea, and severe cramps, so he put me on another dose pack for another 6 days. I felt great for the first 4 days, but as soon as the dose pack wore off, the diarrhea was back. Now the doc is trying an 18 day course of Prednisone, starting at 30mg. and tapering every three days down 5 mg. I am on day 6, so I am on 25 mg. I am now very constipated, and having my heart race (over 100 beats per minute) My heart has raced in the past with anemia, so I don't know if that's it, or a side effect of the Prednisone. My hope is to try the Pentasa again at the end of the Prednisone, just in case I wasn't reacting the the Pentasa the first time around, but rather was sick from recovering from my colonoscopy. I don't want to get dependent on the steroids, and I'm fearful of moving on to the immunosuppressant drugs. This is all so overwhelming. Any advice would be greatly appreciate

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 11/4/2007 4:34 PM (GMT -7)   
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!
44 years old, newly diagnosed in September 2007 but symptoms for several years before that.
Medications: Pentasa, Prednisone (tapering), Prilosec, Synthroid.
Supplements: probiotics, calcium, vitamin C, vitamin E and a multi-vitamin.
History of hypothyroid (dx 2004), and gall bladder surgery (1997).
Single working mom to three wonderful kids, ages 9 to 15.


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4100
   Posted 11/4/2007 5:03 PM (GMT -7)   
Thanks so much for responding! I think I was fearful about getting dependen on the steroids, so my doctor gave me a wimpy dose to start with. I think he listens to me a little too much, and I have no Idea what I'm doing!!! At what point did you start the Pentasa? Did you have any side effects? Did it take you awhile to get used to it? Also, did you get constipated from steroids? If so what do you use? Thanks ever so much for any info you can share!
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 11/4/2007 5:23 PM (GMT -7)   
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.
44 years old, newly diagnosed in September 2007 but symptoms for several years before that.
Medications: Pentasa, Prednisone (tapering), 6 mp, Prilosec, Synthroid.
Supplements: probiotics, calcium, vitamin C, vitamin E and a multi-vitamin.
History of hypothyroid (dx 2004), and gall bladder surgery (1997).
Single working mom to three wonderful kids, ages 9 to 15.


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 11/5/2007 6:27 AM (GMT -7)   
G44,,dont forget to ask all the questions you have to your doctors. Also keep a note book of the meds you are taking and how they work. You may need to try several before they find the ones that work for you. A food diary is a good idea too. You may find a pattern of foods that make you feel bad and avoid them. Main thing, and its the hard one, take it one day at a time. We all want to be well asap. It may not happen that way so deal with one thing at a time.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 11/5/2007 2:39 PM (GMT -7)   
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.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4100
   Posted 11/5/2007 5:31 PM (GMT -7)   
Thank you for all of the wonderful feedback...it really takes the edge off the anxiety around this whole thing! I just have a couple more questions... do any of you stay in remission without taking ANY medication, or do you absolultely have to be taking something in order to stay in remission? I'm planning to try Pentasa one more time, but if that doesn't work, my doctor plans to go to Entocort...but then what do you take to stay in remission after the Entocort...how long can you stay on it? Also, does "remission" really mean "totally fine?" or is the remission concept different for different people? Since my diagnosis in Sept. I haven't moved much beyond the "flare up" stage. Thanks a million for all of your support out there!!!
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007


clavman
Regular Member


Date Joined Sep 2007
Total Posts : 39
   Posted 11/5/2007 5:58 PM (GMT -7)   
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
Bob
47 years old
Dx 3/07 Moderate Crohn's in terminal ileum-Probably had it for years earlier
Rx Prednisone initially for 8 weeks-40mg/day then tapered down to 0
    Currently on Pentasa-2000mg/day

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 6:34 AM (GMT -7)
There are a total of 2,735,263 posts in 301,287 threads.
View Active Threads


Who's Online
This forum has 151394 registered members. Please welcome our newest member, haggis.
285 Guest(s), 7 Registered Member(s) are currently online.  Details
Lyme Yes or No ?, paul hutchins, at20148, VeryLuckyGirl, Paxton, Huddie, haggis


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer