Side effects of budesonide and length of treatment?

raemckee · Post by **raemckee** » Wed Apr 18, 2012 1:48 pm

I've been taking 9mgs budesonide for 3 weeks. The pain in my left side and the intestinal cramps have not subsided. I now have pain in my abdomen (umbilicus region) as well. I still have fecal leakage. I haven't had D for 5 weeks (since colonoscopy where I was diagnosed with MC with biopsies). But I am going a lot (8-10 times a day). Sometimes a lot at a time with cramping other times it's just there and narrow. I'm not sure if taking the budesonide is worth it for me since it is causing additional side effects and it's hard to judge if the inflammation is being helped. Anyone else experience this? Or have some advice? My other symptoms are fatigue, mild heartburn (that I didn't have before treatment with budesonide), bloating, loss of appetite, hoarseness, shortness of breath. I've been GF, DF, caffeine free and alcohol free for 5 weeks. Lately I've had to postpone meals because of the abdominal pain. This is very unlike me. I first experienced fecal incontinence, and then the chronic diarrhea, that led to my diagnosis, in late December 2011.

brandy · Post by **brandy** » Thu Apr 19, 2012 7:42 pm

Hi Raemckee,

I'm not sure that I'll be able to give you much insight. I looked at your previous posts and it looked like you were doing fairly well on the GF DF regimen before drugs. Most users don't seem to have many side effects on Entocort but I had a fair amount that were troubling. I guess at some point you have to decide if the side effects are worse than the situation. The problem is I think for our disease there don't seem to be many alternative medication options which are effective for our disease.

Looking back I remember a fair amount of fecal leakage during month 1 of entocort, fatigue is common with this disease, some days I went a lot and some times it was just there and narrow. I believe several posters recently mentioned stomach pain/spasms/ cramps while on Entocort. I kind of remember having some spasms.

Best wishes, Brandy

raemckee · Post by **raemckee** » Fri Apr 20, 2012 6:37 am

Thank you Brandy. I went to the Dr. yesterday and she recommended adding pepto bismol (3 tabs 3 times a day) for 2 - 3 weeks for the inflammation and Hysocyamine (Nulev) 0.125 mg four times a day as needed for pain. If that doesn't help reduce the volume and frequency she recommended starting 1/4 tsp. liquid imodium 4 times a day (but not until after trying the Pepto Bismol for 2 -3 weeks). I am to continue taking the 9 mgs budesonide in the morning. She also recommended the FODMAP diet. I am being treated at a teaching hospital so I have seen 5 different gastroenterologists.

coryhub · Post by **coryhub** » Fri Apr 20, 2012 10:21 am

Hi Raemckee,
I am sorry the budesonide has not done better for you. My experience with it has been good. I have rolled on and off it three times. It works immediately for me. I did get headaches but then I still get occasional headaches even off the medicine. The downside of Entocorte for me has been that it fools me into thinking I am okay to eat things I should not eat. I feel so good that I begin to sneak things off my diet plan. The first time I was on it for 6 weeks and the chronic diarrhea subsided. Now because of it's cost, I take10 days worth and then try and coast as long as I can with out screwing up my diet.
I am rooting for you and hope that at the end of 6 weeks you see some improvement in frequency of potty times.

brandy · Post by **brandy** » Sat Apr 21, 2012 8:45 am

Hi Cory,

Great post......comments like yours help me stick to GF. I agree that being on Entocort is very seductive. Since my mother has celiac disease I've been able to stick to the GF regimen but comments like yours really help us. Brandy

raemckee · Post by **raemckee** » Sat Apr 21, 2012 11:51 am

During most recent trip to gastroenterolgist she said said:
1. If not reacting to medication within a week, an adjustment may be necessary.
2. Entocort may be required for life.
3. Add pepto bismol for inflammation for 2 - 3 weeks.
4. If that doesn't help, small amounts of liquid imodium for mobility.
5. Immune response is for life.
6. It's too bad that it takes so long to get scheduled for a visit to their office.

CathyMe. · Post by **CathyMe.** » Sat Apr 21, 2012 1:46 pm

Hi Raemckee-I too am sorry the Entorcort is not working for you. I had a very good experience with it-only used it for 9 weeks, tapered down and have been off of it 5 days successfully. I did not have any of the negative side effects that you've experienced. I had major stomach pain and explosive D before taking it but that stopped approximately 2.5 week after I started the 9mg. My GI doctor also recommended the immodium during my tapering off of the med's but I didn't need to use it. It must be extremely frustrating not seeing the same doctor every visit!

I too am DF/GF and watch every thing that I eat.

raemckee · Post by **raemckee** » Tue Apr 24, 2012 1:58 pm

Thank you Cathy. Day two of 6 mgs. after 3 + weeks on 9mgs budesonide. The pattern I've noticed is that the heartburn and stomach pain increases throughout the afternoon and evening. By morning it is back to the BM mobility associated pain. But I am already going more with the reduced budesonide. So I may need to go back up to 9 mgs. and take the dreaded hyoscyamine recently prescribed for the pain. The stomach pain makes it hard to sit up and impossible to bend over. I am missing more days from work. The hycoscyamine works after about an hour and there's enough relief to eat a meal. It has side effects too. I've got these big baggy purply sacks under my eyes as well as dry mouth and elevated heart beat. I've told all of this to my Drs.

Is it unusual to be on pepto bismol and entocort at the same time?

The last time I went I was give a pamplet of the low FODMAP diet. It says 75% of patients will see a reduction or in some cases, resolution of their GI symptoms. I know one of the GI Dr.s has an ongoing study at this University hospital about the FODMAP. Along with your other restrictions, is anyone following the FODMAP?

Regarding the list of intolerances from the stool testing at Enterolab, do you generally find that all food you tested reactive to must be eliminated from your diet?

http://www.todaysdietitian.com/newarchi ... 0p30.shtml
http://www.med.umich.edu/1libr/gastro/L ... uction.pdf

Gloria · Post by **Gloria** » Tue Apr 24, 2012 6:04 pm

Mary Beth followed the FODMAP diet a few years ago, before she did the MRT testing. I think she found it helpful at the time:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9964

Gloria

raemckee · Post by **raemckee** » Wed Apr 25, 2012 11:35 am

Day 3 of 6 mgs. budesonide and Dr. responded by saying that it is too soon to reduce the dosage from 9 mgs. because I had to add the pepto bismol treatment to get a hold of the frequency of BMs and stop fecal leakage. Has anyone taken their budesonide 3 mgs. 3 x a day instead of 9 mgs. in the a.m.? If so, did it help with your side effects?

brandy · Post by **brandy** » Wed Apr 25, 2012 3:27 pm

Hi Rae,

This might clarify,

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=15966

Brandy

raemckee · Post by **raemckee** » Thu Apr 26, 2012 6:45 am

Thanks Brandy. The more information I have, the better. Is remission no more pain and only normals?

I woke to tinnitus last night. I've been on the 3 pepto bismol 3 x a day for a week. Does anyone know if reducing the dosage of pepto bismol will help with that? I am supposed to be on the dosage for 2 - 3 more weeks along with the budesonide. Yesterday I did the 6 mgs. of budesonide in the morning with 3 mgs. at night and the symptoms were manageable. After reading the link above and the link within that link, sounds like I'd better not risk my chance of recovery by splitting the dosage. I feel like it'll be a long 12 weeks with limited activity. I'm fairly certain I'll be missing a lot more work.

Post by **tex** » Thu Apr 26, 2012 7:29 am

Rae,

Please be aware that if the Pepto-Bismol is the cause of the tinnitus, continuing to take it may result in permanent tinnitus problems. For some people, bismuth subsalicylate-induced tinnitus will end when the treatment ends, but for others, the symptoms never completely go away. If tinnitus was a pre-existing problem, sometimes, (though not always), the Pepto treatment will cause the symptoms to become permanently more severe.

Tex

raemckee · Post by **raemckee** » Thu Apr 26, 2012 7:44 am

Thank you Tex. I have a message in to my GI Dr. to get back to me about the Pepto Bismol and budesonide questions.

It looks like I'll need to ask for a leave as long as I am having the painful side effects of the budesonide but I don't want to compromise my chance of achieving remission.

The pain started intensifying during week two and got to the point that I was incapacitated while taking 9 mgs. Does this generally happen when the corticosteroid has "kicked in" and working to its full potential?

Post by **tex** » Thu Apr 26, 2012 8:34 am

As far as I'm aware, most people don't experience increased abdominal pain while taking Entocort, (unless they're taking more than they need, and it is causing constipation).

Tex