Medication

Hi everyone...I am new to this and don't normally sign up on chatting sites but I dicovered it while searching for answers and was really happy to see so many other people are out there are dealing with the same problems. My husband wants to be understanding but somethings he just cannot relate to.

I have had crohnes for quite awhile and have been prescribed Asocol and Pentasa over the years. I have a real problem taking pills especially 4 - 4 times a day. When I feel good I always forget until I have a flare up and then back on them I go!

The latest med is Lialda 3 pills once a day but I discovered by reading my doctors notes that he didn't think Lialda was going to work for me. He put me on it because I am non-compliant to everything else he prescribes.

I went to the emergency room about 3 weeks ago because I have experienced 2 episodes of blockage and apparently lucky because it was discovered that I have a narrowing and inflammation. The doc said if I don't start taking care of it, it will result in surgery one day sooner or later. Yep, scared me into listening!

He put me on Entecort 9mg once per day. I sure you all know that it is a steroid which I have always tried to avoid. I admit it, I am vain and don't want to gain weight. The plan is Entecort for 2 months, a stomach x-ray to evaluate the narrowing and then he suggested Remicade. OMG! has anyone read about this stuff? My husband said no way!

My question is for anyone taking Entecort - Did you have weight gain? How long is the longest anyone has been on it and did you experience loss of sleep and burning up in the middle of the night?

Remicade - Anyone taking that? It seems like the reaction to remicade is worse then the disease. Not sure if he will agree but I think I am willing to try the pentasa agin if it is not too late.

Entocort is nothing compared to the rest of the steroids. It releases locally and doesn't have the systemic effects prednisone or injectable steroids have. Don't worry about the weight gain or sleeplessness.

Hi Collette and welcome! Entocort does not have the same side effects as prednisone, as mentioned by Believer. I'm currently on 9mg of entocort also and have not had any of the usual steroid side effects from it. If I'm not mistaken it does take longer to "kick" in, than, say, prednisone, but its safer. I only had one treatment with Remicade, due to cost, and was switched to Humira. I'm sure someone else will come along with advice, thoughts, etc. on any reactions and/or side effects of Remicade.

Hi Collette - I am from Upstate NY too!
I haven't taken entocort, but have taken prednisone many times. (Also a steroid)
My doc wouldn't put me on entocort because it is so mild compared to pred.
If you don't want to gain weight on it, you just have to work extra hard at watching what you eat. It's not the medication that makes you gain, it's the hunger that the med makes you have.
I am on Remicade. I got to a point where I had no other choice but to go on it or be sick sick sick. The side effects look awful, but so do sides with most meds.
I am doing VERY well on it (I stopped pred right after my first Remi infusion in November, and I started Imuran at the same time, and I am on pentasa too, but I think the Remi has something to do with it.)
I feel VERY good right now - 95% normal!
Some people have been on Remicade for years and done very well on it. Some people have a reaction right away.
If you do a search for her on Remicade you will find a ton of info on it. There is a thread titled 'Remicade Club' that has recent posts from a lot of us who are on it right now.
Welcome to the forum and good luck!

Hello there. There are a lot of war stories on reactions to meds, you have to go with what works for you and listen to your body, because you might pass up something that could potentially work for you. What I have found with CD is it is trial and error with meds, i.e. what works and what dont work. I have tried many medications over the last 8 years. Trying new meds is always scary, you never know how the side-effects will effect you and in what ways. If you have to, as I do, on any new med the Doctor tells me about or puts me on I research it and make the decision for myself.
As for the remicade, been there done that and will not do it again. I had a reaction that left myself in the hospital for 17 days in ICU with pancreatitis. But I didn't have the reaction tilll the third treatment of remicade.
Hope this helps and welcome to the forum I am new myself.

Sincerely and Respectfully, Gary

I was on Entocort for like 3 months and I didn't have those kinds of side effects. I did gain weight, but not from the drug. I was trying to get myself back to a normal weight. The Entocort kicked me into remission. It was great!

Thanks for the feedback everyone! I feel pretty confident with the Entocort and hope my test results in April show that this is all I will need. If anyone is going to have a bad reaction to Remicade, that would be me! I get all the weird stuff! lol My doc says I am in denial and ignore my condition but I honestly feel Remicade is overkill right now. If things get worse down the road maybe I will reconsider but for now I am a bit resistant to the thought. Thanks again!

I took entocort once for about a month and didn't get any weight gain but it really doesn't work as well as prednisone. I also have tried to avoid the steroids in the past because of vanity, prednisone makes my face swell like a balloon, but with my latest flare i gave up the battle and am now on prednisone 45 mg. daily and currently not tapering. I started at 60 mg. but doc doesn't think im stable enough to go any lower at this time. I hate the side effects but hate being sick and miserable in bed all day even more. I've taken remicade in the past but didn't stay on very long. I was on Purinethol which is another strong one for about 8 years and never had a bad reaction, but it stopped working recently and am about to start methotrexate, another cancer med. I definately agree these medications are scary and I hate taking them too but the weaker ones like asacol and pentasa which I've also been on dont seem to be enough and you can't go the rest of your life with the steroids, those have really bad long term side effects as well which is why having one of the stronger medications is important in order to prevent the flare ups rather than treating the flare with steroids everytime you get one.

I have been taking Entocort for over a year. [expensive] No weight gain or puffy face.
However before that I was taking prednisone for years. cheap and effective.
I also take pentasa. 9 a day. I just have a candy dish on the table and grab a handful now and then, just kidding.
I am not vain ............ been poked and probed and balding and 60. Been handling Crohn's for 30 years and doing ok. HAH
Also had 2 ops. Expensive plumbing jobs.
Most days I wake up ok ........ others not.
I just take one day at a time.

You'll find a lot of help here in the forum.

Best to you ..................... you ARE NOT ALONE.

Harry