Entocort Experiences

[youman88]

I was taking Entocort 9mg/day for 5-6 weeks and my symptoms cleared up this past week. I had normal stools! So Saturday I quit cold turkey and relapsed by Monday morning. So much for that.

Anyone else have similar experiences? I am going to taper next time, if I get my symptoms under control again. Any tapering experiences any of you can share?

 

[Nyx]

I can only relate my experiences with Prednisone (Entocorts stronger brother...lol). I was on Prednisone 60mg for 2 weeks, then tapered down by 5mg every 2 weeks till finished. So I was on it for 6 months. In conjunction with the Prednisone I was also started on Imuran. You need to be on something else besides the steriod (you can't stay on steriods forever, your liver would be toast..and not to mention the other horrible side effects). The purpose of the steriod is to get the flare under control so you can take something else to maintain the 'remission'. Unfortunately for me, the meds came too late, and I needed surgery (which turned out to be the best thing in the end).

Are you on anything else besides the Entocort? Any maintenance drugs?

 

[youman88]

I am supposed to be on Pentasa, but I don't know how effective that is. I have never tried anything besides those two drugs. I am scared about trying Prednisone or Azathioprine though, which is what my doctor recommended if symptoms don't get under control.

 

[Nyx]

You may need something stronger than the Entocort. Pentasa is a very mild drug with very little side effects. It's great for people with very mild Crohn's. My disease unfortunately went wildly aggressive after 2 years ( I was on Pentasa for the first 2 years). I probably should have been on something like Imuran or Remicade from the start. It's all highly individual. Keep an eye on your symptoms and confer with your doctor. Don't ignore anything!

 

[krs2]

Entocort was amazing. At the time it didnt seem like much but looking back it was like a constant high... my alarm would ring in the morning, I'd jump out of bed ready to start the day go to work and want to start 10 projects at once. I'd come home and want to work out then go out with friends.

Downside is it doesnt necessarily make you feel better emotionally. One minute I'm thinking I'm on top of the world, the next minute I feel depressed and like an ugly duckling that no one likes. I guess that's the trade-off for getting such a high energy level.

I stopped entocort when I started 6-mp and now I feel like a slug.. what good is having no pain if you have no energy to enjoy it with?

 

[teeny5]

I tapered off Entocort. Pentasa did not work for me. I was put on Asacol, Sulfasalzine, and now Colazol. Tell your Dr. if the meds aren't working there are many options.

 

[NatalieMT]

I'm currently on Entocort, but I can't come off it without my symptoms coming back either. I've been on it probably 6 months now, because at the moment I don't have any other medication options. I feel okay though I guess which is a good thing. If you want to taper off, I'd try 9mg for a week, 6mg for a week, then 3mg a week and stop etc.

I was on pred for 5 months (it was great to be fair, I felt good) but can't return to that for fear of my bone health, Pentasa didn't work for me at all and with Azathioprine I got terrible side effects. 6mp and Methotrexate are therefore out of the question and I don't meet the NHS criteria (or NICE guidelines) for Infliximab/Humira without sorting out a hearing with a bespoke care panel.

I wouldn't be scared of any of the medications, they're only prescribed because the benefits of them outweigh the potential risks.

 

[Astra]

Natalie! I'm appalled! WTF? A hearing with a bespoke care panel? Why?
I saw my gastro last week and he okayed the Humira for me, no questions asked, never mentioned any criteria, or cost or anything!

Sorry Youman for hi-jacking your thread!
but a big welcome to you!
Entocort is Budesonide here in the UK and I tried it a few years back, and it did diddly squat for me. Unlike Prednisolone, you dont have to taper Budesonide, you can just stop it.
I've tried Mercaptupurine and Azathioprine too, and I was allergic (came out in hives)
I've been on Pentasa for many years now, and whilst it is an anti inflam and preventative and helps to maintain a healthy gut, it's no good during a flare without a back-up
The back-up for a major flare is Prednisolone, it has fantastic healing properties and saved my life 3 months ago (hospital with infection) I started at 40mg for 28 days then tapered slowly by 5mg per week, I'm on 5mg this week, and I feel fine, no pain, no D, no nothing.
You have nothing to lose from trying Pred, but everything to gain, it is a fab drug, and 3 months is enough to heal your flare, and if symptoms come back, you can move on to an immuno suppressant like Aza or 6MP. Pred has some scary side effects such as insomnia and over eating, but I managed ok. the side effects are a small price to pay for being pain free.
Any questions, just shoot
good luck with whatever you decide, remember tho, we are all different and respond differently, you have to exhaust all avenues to find 'the one'
Joan xxx

 

[youman88]

I'm currently on Entocort, but I can't come off it without my symptoms coming back either. I've been on it probably 6 months now, because at the moment I don't have any other medication options. I feel okay though I guess which is a good thing. If you want to taper off, I'd try 9mg for a week, 6mg for a week, then 3mg a week and stop etc.

I was on pred for 5 months (it was great to be fair, I felt good) but can't return to that for fear of my bone health, Pentasa didn't work for me at all and with Azathioprine I got terrible side effects. 6mp and Methotrexate are therefore out of the question and I don't meet the NHS criteria (or NICE guidelines) for Infliximab/Humira without sorting out a hearing with a bespoke care panel.

I wouldn't be scared of any of the medications, they're only prescribed because the benefits of them outweigh the potential risks.

So how did you attempt to come off of it? Taper from 9mg to 6mg and then your symptoms came back? Can you tell me more about your experiences trying to come off of it? After your symptoms came back, how long till Entocort was effective again?

This cold turkey thing has really thrown my insides for a loop! There is some serious pain today.

THANKS for the input everyone else.

 

[NatalieMT]

So how did you attempt to come off of it? Taper from 9mg to 6mg and then your symptoms came back? Can you tell me more about your experiences trying to come off of it? After your symptoms came back, how long till Entocort was effective again?

I attempted to come off the Entocort only a few weeks after I started it, I took 9mg for a few weeks, then went to 6mg for a week, then I tried 3mg and I felt like I'd been hit by a bus, the return of the symptoms was literally almost instant. So I went back up to 6mg and felt relatively stable but that probably took a few weeks. I recently had to increase to 9mg again, I too was in a lot of pain wondering about going to the hospital. Things seemed to have settled on their own though, plus I dosed myself up with painkillers and I'm back to 6mg at the moment.

I find it took around 3/4 weeks for me to feel any positive effects from the Entocort at first. I have read Entocort doesn't maintain remission well after 6 months of use though, which is where I am at now. So that could be why lately I haven't felt as well as I did initially.

I'd say though if you don't feel good at this point find another medication, that is what I plan to hopefully do because although at the moment I am grateful to be able to take the Entocort I just don't feel right, I'm sure there has got to be a better quality of life out there! Hope you manage to find some relief soon aswell, take care!

 

[Astra]

Youman & Natalie

After posting last night, it made me wonder about the Budesonide, and what happened when I came off it, I started in September 09, and did the dosage the same as you Natalie, I stopped around New Year 2010. Then on January 13th '10
I was admitted into hospital for a week with major flare, infection and narrowing!
Just wondering whether it was coming off Budesonide that nearly killed me!

 

[violetcreams]

Hey, just wanted to add my two pence worth.....

You do have to taper with budesonide. It's dangeorous to stop completely, without tapering!!!!

Natalie, my symptoms flare right back up if I try to reduce the budesonide too (despite being on aza). Goodness knows how I'll get off it!!

 

[Astra]

Hi Violet

Now you see, I was told to just stop it! No need to taper, now I'm convinced it's what nearly killed me! Anyway I've binned that quack, and got a new one
xxx

 

[rcschilke]

I was taking Entocort 9mg/day for 5-6 weeks and my symptoms cleared up this past week. I had normal stools! So Saturday I quit cold turkey and relapsed by Monday morning. So much for that.

Anyone else have similar experiences? I am going to taper next time, if I get my symptoms under control again. Any tapering experiences any of you can share?

Do not quite cold turkey you must quit gradually its is harmful to do other wise and if your gi doc doesnt seem like much help look into a new one.

 

[Astra]

http://en.wikipedia.org/wiki/Budesonide

says here you don't have to taper!
Don't know what to believe!

 

[youman88]

Taper! Natalie said it best, after I quit cold turkey, it felt like I was hit with a ton of bricks!

I felt terrible yesterday, lots of pain in my lower right quadrant. Feeling hungry and wonderful today! It only took me 2 days off the Entocort for the symptoms to come back. After 3 days back on Entocort, I am getting better again. Almost have normal stools too!

I am going to taper to 6mg middle of next week and see how that goes.

 

[youman88]

http://www.ncbi.nlm.nih.gov/pubmed/13680283

Ran into this and thought it might be of some help to somebody.
Worth a shot trying 15mg instead of 9mg if you get a flare and need to go on something.

 

[MapleLeafGirl]

I was on it for 8 weeks. Felt great for the first two, but then didn't do anything for me. The doctor said I didn't need to taper, so I didn't. I noticed no problems with not tapering, but then again I was already feeling like crap.

 

[PeninsulaLil]

I was on predisone and it did nothing. Then GI tried entocort. I was on 9mg for 8 weeks, then 6mg for two weeks, then 3mg for two weeks. When I went down to 3mg added in asacol. I've been on just the asacol for three weeks now and so far so good. Considering no normal bowel movements for 2 years, I'm pretty happy and have my fingers crossed. On the last week I did have a severe episode of vomiting, was given pepsin and it cleared right up. Apparently acidic stomach is a possible side effect from the entocort.

As an aside, I am surprised by how many people who write on this forum take and stop medications without consulting a doc. With my GI, I feel like we are working together on controlling my disease. I have Kaiser which is an HMO so all my medical records are available to all my doctors. If I have a question, I can talk to an advice nurse immediately or email my doctor and get an answer the same day. One time after I took some tests, my GI called me to tell me that something non-Crohn's related had shown up and that he talked to my GP. He was calling just to tell me that I should expect a call from my GP!

Lilly