Wondering when Entocort will start working.

[Reena]

Okay so I have recently been diagnosed with CD and my GI said it was only mild so she put me on Entocort, 9mg for 1 month then 6mg for another month, then 3mg for a month.

It's been nearly 3 weeks and I have seen any changes other than how bad the meds are making me feel.

Anyone been in the same situation and know if it's going to get any better? How long did it take for yours to start working?

 

[julie2045uk]

Hi

I was just diagnosed with Crohn's and started 3mg Entocort three weeks ago. Was feeling great, no pain was eating and feeling full of energy till three days ago then back to before.
Think everyone is different so may start to work for you if not see dr again.

 

[Marx]

Hi

When I was put on entocort (budesonide) it did he trick straight away. Not perfect but noticeable difference. It actually worked for me for about a year until my crohns got worse. But hopefully it settles yours very soon. Steroids should generally work quickly. When I tapered off, it got worse so my doc out me back on 9mgs.

 

[Reena]

Thank you for your guidance I talked to my GI today she's taking me off them and doing more procedures. I hope they find out what's going on soon, getting impatient haha.
julie, I hope it gets better for you soon.

 

[Marx]

No worries

Glad you got a hold of your GI. The thing with entocort is that it only works on the ileum, so if your disease is anywhere else it won't be as effective.

I know I was the same. You just wanna find out what's wrong and get treated.
Well hope the tests go well and you find remission pretty quickly.

 

[Angrybird]

Hello and welcome to the forum

What tests have you had so far and did the doc say what further tests she now is going to order? I am sorry to hear that the entocort has not been able to settle things for you. An alternative that may end up being prescribed is Prednisone, this comes with its own set of side effects but for me has always been magic at sorting the tum.

Will be keeping fingers crossed that things can be sorted for you soon.

AB
xx

 

[Reena]

Hello Angry Bird and thank you

I have had 2 endoscopies, a pH monitoring test, a colonoscopy with biopsies, 2 ultrasounds and a faecal calprotectin test. I think she wants to either do a Barium follow through or an MRI or CT scan.
Yeah I've heard of Prednisone and the side effects, it seems pretty scary. I think the people who have to take it are very brave.

Thank you for the reply x

 

[Angrybird]

No worries hun, please keep us updated on you get on.

 

[fosamoa]

I was also recently diagnosed and put on the 9-6-3 mg monthly regiment. I saw almost complete remission at the start however after recently going down to the 1 pill, I've had flare ups come back full force. I see someone mentioned they were put back on a higher dosage. I wonder if I'll do the same. Although, isn't it dangerous to be on that much steroids for so long?

 

[Angrybird]

It's not ideal to be on steroids long term and the docs should always have you on a calcium supplement to protect the 'ol bones. I once had an 18month stint on them due to having problems tapering off them but have seen folk here who have been on a low dose for longer than that. Usually the docs will taper you down more at smaller doses between bigger intervals to try and get you off them.

 

[Reena]

Do you know if there is any alternative to steroids?

 

[Angrybird]

One thing I have seen mention of that has been compared to steroids at inducing remission is enteral nutrition, it may be worth looking into this.

 

[Reena]

Thank you, sounds like it would give relief to my intestines. To be honest though I'm a bit scared to ask my doctor about trying other things because the last time I did this doctor talked to me as if I was stupid

 

[Angrybird]

If you are not comfortable with your doc it may be worth looking to seeing a new one, you should never be made to feel stupid for asking questions that relate to your health and wellbeing.

 

[Reena]

Well, I feel a lot better now I'm off the Entocort I realised it was making me really depressed. Even though my stomach is killing me, I'm a bit more motivated to do things

 

[Angrybird]

When do you next see your doc so you can discuss other treatment options? Do you follow any kind of low res diet at the moment to maybe help with symptoms? Glad things have improved mood wise for you.

 

[Reena]

I haven't got an appointment slip through, probably within the next couple of weeks. I don't, they just told me to try to stay away from highly fibrous vegetables like onions.

 

[Angrybird]

Perhaps have a look at this side of things, try to go on as bland a diet as possible and low res foods and then keep a food diary of what increases symptoms as you introduce other foods. There are special shakes available so you can start on liquids only but I think you have to be referred to a dietician to have these prescribed.

 

[Reena]

Good idea, I'll go see my GP see if I can get the special shakes if not then I'll still try the bland diet.
Thank you for all your help Angrybird

 

[Angrybird]

That's alright hun, I sure do hope you can be feeling some improvement soon.