Back on Budesonide again.

wonderwoman · Post by **wonderwoman** » Fri May 11, 2012 10:11 am

If you recall, I had switched from Pepto Bismol to Imodium and have been following a strict GF, DF, SF diet. No processed foods. Everything made from scratch at home. Yesterday I took 4 Imodium and still had WD 6 times and in between BM’s I was having leakage so I was getting pretty sore. Last night I went for a walk and about a half block from home I had the urge to go. I squeezed as hard as I could but it didn’t stop me from messing my britches. I wondered how there could be anything left in me. It was the soft serve type. What a mess.

Regarding coffee. My MRT test in January showed I was NOT sensitive to CAFFEINE, it was way on the bottom of the green, however, COFFEE was a low yellow so according to this I was supposed to eliminate coffee and I did back in January. I thought I would miss my decaf coffee in the morning but I don’t. This morning for some reason I decided to make myself one cup of decaf. Within 20 minutes I had a strong urge to go and couldn’t get to the bathroom in time and messed my pants again.

After these two messes I said that’s enough. I took three Budesonide along with an Imodium and will continue with the Budesonide until I can reduce it again. The GI prescribed this in December and I never had to use them because I still had a supply left from Canada that I wanted to use first. Of course I didn’t tell him because I wanted to replenish my supply. I now have a three month supply of the new RX here and have two refills left. I noticed this morning that the capsules in these three new RX containers have “ENTOCORT” written on them, however, the label on the outside of the container says Budesonide EC. I am wondering if I am taking the brand name Entocort or the generic Budesonide?

Because so many here raved about the Chex Cinnamon & Chex Honey Nut cereal I bought a box of each yesterday and had some of the honey nut plain as a snack in the afternoon. I have been wondering if corn is a trigger for me. According to MRT it is a low green. I have been eating the rice Chex and it hasn’t bothered me that I can tell.

The chicken I ate last night could also be questionable. I am going to look for Sandersons brand.

Can’t wait to get my results from Enterolab. Have two weeks to go yet. I also am keeping a food diary.

Something I just thought of is how can you follow the MRT plan and try to figure out your reactions when on Budesonide which suppresses your reactions?

JFR · Post by **JFR** » Fri May 11, 2012 10:54 am

Sorry you are going through all this. Hope you see quick improvement. It's sure not fun.

Jean

Post by **tex** » Fri May 11, 2012 11:52 am

Charlotte wrote:I am wondering if I am taking the brand name Entocort or the generic Budesonide?

I'm sure you're taking the version made by AstraZeneca. For the generic version, they only change the packaging. Which raises the question, "Why is there even a price difference?" Clearly, they are the same, identical product. Pharmaceutical pricing in the U. S. is obviously arbitrary, and it's based on what the market will bear, with little or no consideration of the cost of production.

Charlotte wrote:Something I just thought of is how can you follow the MRT plan and try to figure out your reactions when on Budesonide which suppresses your reactions?

Budesonide suppresses inflammation by reducing the number of mast cells present in the subepithelia of the intestines. Some of the effects of inflammation modulators will surely be affected by budesonide, while others will not, because not all inflammation modulators are released by mast cells. Some are released by macrophages, eosinophils, and various other white blood cells. It's difficult to say what effect it may have on the MRT results.

Sorry about the relapse.

Tex

coryhub · Post by **coryhub** » Fri May 11, 2012 1:53 pm

Hi Wonderwoman,
I guess you are glad to have had your stash of Budesonide on hand. Entocort is my go to medicine in emergencies. If you are sensitive to coffee does that mean you can't have decaf either? I have stayed away from caffeine but have an occasional decaf. I love Cinnamon Chex. I ate a whole box of Share22
Read more: http://thefrugalgirls.com/2012/04/post- ... z1uanJFOPl
cocoa pebbles last week while watching a movie, instead of popcorn. I experienced no ill effect.

Gloria · Post by **Gloria** » Fri May 11, 2012 6:51 pm

Charlotte wrote:Something I just thought of is how can you follow the MRT plan and try to figure out your reactions when on Budesonide which suppresses your reactions?

The trick to determining intolerances while on Entocort, or even Imodium, is to reduce the dosage enough so that you will react to the foods, but you still have fairly good control. The amount of Entocort will vary for each person. It has varied for me over the years. A few years ago, 3 mg. Entocort per day or every other day was enough. Now, I'm taking 6 mg. per day plus 1/2 Imodium, which seems to be the right dosage at the moment. I have 1-2 Normans per day, but I will react if I eat the wrong food. You may find that 3 mg. one day, 6 mg. the next is the right dosage. It takes some experimenting to determine the dosage, but it's not too difficult.

I also should mention that the MRT test results are a guideline, but are not absolute, especially with the grains and dairy. I had numerous green test results in all of the categories, but I am only able to eat three meats, two vegetables, one grain, and one fruit. I have reacted to all of the other greens I've tried. I trust the red and the yellow results, but not the green results. IOW, people should see the test results as additional restrictions, not new additions, to the diet.

Gloria

Leah · Post by **Leah** » Fri May 11, 2012 8:44 pm

Hi Wonderwoman. Sorry to hear that you had to go back on Entocort, but we all have to find a way to manage this disease. I am currently taking 6mg a day, but am thinking of alternating days between 6 mg and 3. My "reaction" feeling when I eat something I am not sure about, is a little bit of discomfort, tenderness in the abdomen, and sometimes gas. But no D. So, there IS a reaction, it just may be slight, so you have to pay close attention.

Hope you feel better soon.

Leah

coryhub · Post by **coryhub** » Mon May 14, 2012 11:21 am

I have rejoined the Entocort club. I wasn't off it for 2 months and here I am back on it. I feel defeated and deflated. The deciding factor was I am now able to buy this drug for a copay of $20 so I thought why suffer? On Sunday, I asked for a rain check on a Mother's Day dining out because I felt so sick. That made me feel sad so I started taking this medicine again. Last night, I could not sleep. I wonder if anyone has had sleep disturbance as a side effect? I really wanted to make it on diet alone but I am a dismal failure. I keep throwing food out and giving it away and now my cupboard is so bare I can't find anything I want to eat and I am miserable. I think if I did not work 40 hours a week I could do better... but alas.....I've got a few years to go before retirement.

Post by **tex** » Mon May 14, 2012 12:01 pm

Cory,

Yes, unfortunately, one of the side effects of corticosteroids is possible sleep disruption. Hopefully that will improve as you get to a point where you're able to taper down the dosage.

Tex

Zizzle · Post by **Zizzle** » Mon May 14, 2012 12:10 pm

Regerding the GF Chex, I'm beginning to wonder if we may be reacting to the preservative they use, BHT. It seems to be one of the biggies for kids with ADHD, etc. Other GF cereals tend to be in the natural section and use Vit E (mixed tocopherols) as preservatives.

I recall a recent thread about alternating dosing of Entocort. Here's a clinical trial underway examining various ways of taking it, FYI.

http://clinicaltrials.gov/ct2/show/NCT01278082

brandy · Post by **brandy** » Mon May 14, 2012 6:19 pm

Hi Zizzle,

Good link on taper down of Entocort. I didn't do as suggested, i.e. two pills one day then one pill next day then two pills next day then one pill next day but I recall the step down from two pills to one was a pretty big drop in budesonide in your system. It would probably help users when they drop from two pills, go to the two/one scenario for awhile, and then finally down to one pill as a sequence. Brandy

Leah · Post by **Leah** » Tue May 15, 2012 9:30 am

Oh Cory, so sorry that your aren't doing well. YOU ARE NOT A DISMAL FAILURE! This is a tough disease to deal with. Think of this as a set back, but you will get better again. You may be one of those of us who has to be on a small dose of Entocort or immodium for life. That doesn't mean you have failed though. Tex said what I would have: when you get the dose lower again, then your sleep will probably improve. Stress doesn't help you sleep either.

Hope you feel better soon!

Leah

Sheila · Post by **Sheila** » Tue May 15, 2012 2:07 pm

Wonderwoman, I'm so sorry you are suffering with so much D. It's hateful. I take 1 entorcort a day and have beginning with the first week. Three a day made me so constipated and uncomfortable I couldn't bear it. My D stopped the very first day of taking entocort. It felt like a miracle.

I had a flare a while ago even while on the entocort. When I couldn't make it to the bathroom I almost cried. I was afraid I was going back to square one. I eliminated as much of the "new" foods, vitamins etc I had added to my diet as I could and took 2 entocort a day for a few days. I didn't feel really well for weeks but there was no more D. Even being GF/SF/DF and on entocort, there are many days I have gas and have 4-6 mostly normans in the morning before I take the entocort. Something is getting to me and I'm not sure what it is.

Good luck and let us know how you are doing
Sheila W

wonderwoman · Post by **wonderwoman** » Tue May 15, 2012 4:08 pm

Friday I went back on three Budesonide and took 3 for 3 days. Yesterday and today I took 2 and seem to be doing OK. It's amazing the change in consistency of BM's when I'm on even a low dose of the RX. Haven't taken any Imodium since going back on Budesonide.

Gloria · Post by **Gloria** » Tue May 15, 2012 9:05 pm

Cory, you are not a failure because you went back on Entocort. I've been on this board long enough to see all kinds of MC cases. Some get better very quickly after only eliminating gluten. Some have to eliminate a few more foods, but then they're better. Many of us get better and then get worse and need to reassess the way we are treating our MC.

We are all different and we can't compare our own path with anyone else's. As Gabes writes "There is no wrong way or right way - there is only your way." If your way requires Entocort because of stress, work, or your own individual makeup, so be it. That's not failure, that's accepting the reality of your situation.

I hope you find relief soon.

Gloria

Post by **tex** » Wed May 16, 2012 9:33 am

Well said.

Tex