Stopping Entocort

[lisa15601]

Talked to Gastro this morning and I'm going to stop taking the Entocort. She said the Entocort should not be causing all these side effects, and if I am getting them to start the Pepto Regimen again. She said LC does not cause pain. Mostly D and Mucus. Im so disgusted right now.

[Joefnh]

I can see the Entocort causing insomnia and it would be a good trial to stop it for a bit. As far as pain, MC is at least here among the sufferers known to cause pain.

--Joe

[starfire]

I think more doctors need to get MC. Especially GI's. At least my last GI in florida told me that I'm very lucky. He said there are a lot of people really suffering out there. At least he admits it.

Love, Shirley

[fillard1]

For me it made it all worse..the sudden change in bowels was worse than it was before I started it going from the big D to rocks in a matter of a few minutes....and the pain was worse as well.
I took it for 3 weeks and just couldnt handel it anymore..its been 2 weeks since I stopped and all though there is still alot of pain its easyer for me to manage just by watching what I eat. I don't think I am going to continue to be a lab animal for my Dr and keep taking meds that are for other issues. So far nothing has done as good as I have by just being carefull about the food I eat. The pain sucks and the bathroom visits are like going to the dentest for a root canal but its still better than the added torture of entocort!!

[lisa15601]

I don't even think I want to start the Pepto Regimen again. What does everyone think?

I did it for like 3 or 4 days and it was horrid. Im going to try to beat this with the food changes. I have had so much crap in my system for so long, I think it needs a break. Even if it takes me months, I will beat this.

[Kari]

Way to go Lisa!!! You will beat it - and if you can beat it without drugs, all the better!!! I've been at it for close to 5 months now, and it's not easy, but I see steady progress, which is all I need to be encouraged and keep going. If you're not already keeping a food diary, I highly recommend it - it is a great help in ferreting out intolerances.

I'm rooting for you!!!

Love,
Kari

[natythingycolbery]

Can I steal some of your positive vibes, mine have all run away!

[Kari]

Oh Naty - sorry you're not feeling well. Just remember, tomorrow is a brand new day, and you might just wake up feeling great!!! Sending positive vibes your way :).

Lots of love,
Kari

[MaggieRedwings]

Morning,

Nati - Hope today is a good one for you and sometimes you have to dig really deep with this disease to feel up. However, it does get better with time. Good vibes to you.

Lisa - Diet is the route I take but it has taken a very long time for me. I think I am more the exception. Please hang in there and you will see results.

Maggie

[catsrule]

Lisa I have pain in my knees, ankles, and thighs and was too told that mc doesn't cause pain. Well I never had this pain until this started! Now I do have fibromyalgia on top of it and it could be that it is causing the fibro to flair big time. I too could not take entocort. I could not sleep at all and I listened to the loud and fast thumps of my heart all night! I am now taking asacol hd, been on it for a week. I do seem to be tolerating it better than the entocort so far, at least I am sleeping better at night. The terrible pain is still there. I also found out that my vitamin d is a bit low so I'm gonna try a vitamin d tablet (low dose first) and see what that does. I feel like I'm never gonna get better or be my old self again. Every day is a struggle.

[lisa15601]

I so feel your pain. And these docs say they cant cause these side effects. Can you Private message me with your email so we may chat

[catsrule]

I pm'd you Lisa.