thank you from newbie, comments re: entocourt vs pepto

brandy · Post by **brandy** » Tue Nov 15, 2011 4:36 pm

This is a long overdue thank you from a newbie. I went on Entocourt 9-1-11 mostly due to the positive feedback from this forum. I was diagnosed with CC prior to going on Entocourt. I was already starting to "get better" prior to going on Entocourt, i.e. I had "ribboning stools" for 8 weeks prior to starting Entocourt. I was really on a fence on going on the Entocourt since I was already starting to get better. The Entocourt is truly a miracle drug but that being said I was one of the rare ones who encountered side effects. I was prescribed with the standard 3 3 mg capsules for 1 mth, 2 3 mg capsules for 1 mth and 1 3 mg capsules for 1 month. I don't take any other drugs and at the start was not taking any supplements. Side effects I encountered were EXTREME dizziness and hair falling out. That being said I stuck it out with the Entocourt as I had REALLY SUFFERED and needed help in getting better and stronger. The hair loss occurred mostly in the first two weeks and then seemed to stabilize. The dizziness at 3 3 mg capsules was very severe...I was able to work but only drove 1/2 mile to the grocery store and I was dizzy pretty much 24 hours /day. Due to the side effects I knew I had to push to get thru the steps quicker. I was on 3 3 mg capsules for 3 weeks--actually tried to step down at 2 weeks but it was too soon. I was on 2 3 mg capsules for two weeks. The dizziness was actually worse on two capsules as I had what I would call "dizziness spikes." i.e. I'd take my entocourt at 7:00 am and be dizzy/high from around 10:00 am -4:00 whereas on the 3 pills I was dizzy round the clock. Then I stepped down to 1 capsule for 10 days. I seemed to have kind of withdrawl kind of thing going from 2 pills to 1 pill, i.e. for about 3 days I had anxiety. At present I've been 1 capsule every other day and plan to go on a long wean off period due to the feedback on this forum so I'll probably go every other day for about a month and every third day for a month to 6 weeks. At each stage if I had constipation for 3 days in a row I would go down to the next level.

Despite the side effects I encountered I'm still glad I went on the Entocourt as I was in rough shape during the summer.

That being said why the GI doc did not tell me to try pepto at my first site visit is beyond me. I'm almost certain he suspected that I had MC during my site visit as there was at least a 15 minute conversation about my age so much so that I thought he was hitting on me. I am 50 and there was about a 15 minute conversation about how much younger I look and I'm almost certain he suspected MC. I had no idea that John Hopkins and Dr Fine both recommend the Pepto until after I was well under way on the Entocourt.

So overall despite the side effects I'm glad I took the Entocourt. I think the side effects have forced me to really work on diet. I was in pretty rough shape when I was given Entocourt as an option. I think if I had been diagnosed in say May of this year instead of Sept and was still in "good shape," it might have been productive to first try the Pepto treatment of 8 pills per day for 8 weeks prior to going on Entocourt.

I hope this feedback is helpful to those newly diagnosed and I thank all of the volunteers.

Happy Thanksgiving, Brandy

Post by **tex** » Tue Nov 15, 2011 6:31 pm

Hi Brandy,

Wow! You're tough to stick with the Entocort, in view of all those severe side effects. I probably would have chickened out after about a week of that.

I'm glad that after all the trouble, it has at least been effective.

You must have really caught your doctor's eye - most of us are lucky to get 10 minutes total office time out of our GI doc.

Thanks for the update - I hope that your progress continues. And happy thanksgiving to you, too.

Tex

sarkin · Post by **sarkin** » Tue Nov 15, 2011 6:40 pm

Brandy,

Sorry to hear about the side effects - hope that's the roughest patch you encounter, on your road to wellness! Please keep us posted on your progress with diet, and best of luck to you for smooth sailing, and a happy and delicious Thanksgiving!

--Sara

MaggieRedwings · Post by **MaggieRedwings** » Wed Nov 16, 2011 6:01 am

HI Brandy,

You are braver than me. I encountered similar side effect of dizziness and blurred vision coupled with imbalance and dropped it almost immediately. Stayed my route of no meds and diet alone.

Glad you are doing well.

Maggie

Lesley · Post by **Lesley** » Wed Nov 16, 2011 3:36 pm

Hi Brandy,

I am glad you are getting better in spite of the entocort. What did your doc say about the side effects? I would never have been able to keep on with it with that sort of side effect.
I hope you are in better shape now, and can eat a few more things without running for the toilet.

brandy · Post by **brandy** » Wed Nov 16, 2011 4:09 pm

Thanks for the remarks Tex, again I don't want to discourage anyone from taking the Entocourt it truly is miraculous but be aware like any drug there can be side effects. I think for me I had really suffered on work business trips across the country and was really run down when I went on the Entocourt and the benefits of taking the drug outweighed the side effects rough as they were. I actually had pretty strong neurological issues before I was diagnosed but I'll do a separate post on that...it is another good story.

I know for me I "lurked" for months just because I was too weak to post but overall I'm doing way better and in fact am now heading out to the gym.

Brandy

brandy · Post by **brandy** » Wed Nov 16, 2011 4:15 pm

Hi Lesley,

I called the GI Doc at the end of week two re: the dizziness and actually talked with his assistant. She advised they just fielded the same type of call from another lady the week before and I could "step down" to the next dose quicker.

My family doc, whom I love, prepped me before connecting with the GI Doc that a lot of the GI meds come with severe effects. Overall I'm doing good now.

Brandy

Lesley · Post by **Lesley** » Wed Nov 16, 2011 6:10 pm

Really glad to hear it Brandy. I am trying to avoid taking entocourt because it was SO hard to get off the prednisone, although I know it's not nearly as bad.

In fact I am sort of happy I went on prednisone first, because I was bound and determined to get off it. By the time I did and got the entocourt I was already pretty set on the decision not to take it if I could help it.
So I have it JIC I can't make it without taking it. I hope I can avoid it.

brandy · Post by **brandy** » Thu Nov 17, 2011 7:53 pm

Thanks for your comments Lesley and best of luck! Brandy

Lesley · Post by **Lesley** » Thu Nov 17, 2011 8:07 pm

Thanks Brandy. You too!