Recurrance of Crohn's symtoms after Prednisone taper

[Cloud123]

Hello,

I'm wondering how many people have had any luck with prednisone and their Crohn's symptoms did not return after the taper. I have never used this drug before because I have heard that it is just a temporary fix and Crohn's symptoms will return at the end of a taper. Is there anyone who has used Prednisone and it has led them to a successful remission? Most everywhere I have read shows that Crohn's symptoms only return after the taper.

I'm currently on Entocort but that doesn't seem to be working after using it for 2 weeks.

 

[Mehita]

Has your GI mentioned anything about a maintenance med for you after coming off the steroids? Generally, most people with Crohn's need to be on a maintenance med to stay in remission.

 

[afidz]

Prednisone is not meant to be used long term. it is usually used along side of a long term medication. Most of the long term medications take time to work because they need to be builtup in your system. So while waiting for those meds to begin working, doctors prescribe prednisone because is fast acting and can bring down inflammation quickly. Yes, some people do start experiencing flare up symptoms when they get towards the end of the taper, but thus is not always the case.

 

[Jennifer]

Hi Cloud123 and welcome to the forum!

Steroids are used to bring down current inflammation but don't prevent it from recurring. That's why many people notice symptoms returning while they are tapering off of them. As mentioned a maintenance medication would be needed to help keep you in remission rather than going off and on steroids all the time.

Also its important to keep in mind that Entocort can take longer than Prednisone to start working (some members have mentioned it taking 3 weeks+ to start working). What dose are you taking?

 

[Cloud123]

Thanks everyone for you input!! It is very helpful. I've been taking Lialda for about a year now and I will continue to take it as a maintenance med. I'm worried that it won't keep me in remission as i taper off the pred.

Jennifer, thanks for the info. I'm taking 9 mg of Entocort. I've seen little improvement in the past two weeks. Mostly there has been less bleeding. Has anyone taken more than 9 mg of Entocort?

Thanks!

 

[Jennifer]

I never have but my GI said that it is possible to increase the dose above 9mg (he did not say how much or for how long). Talk to your GI about it.

Since you're taking Mesalamine/Lialda, I encourage you to read this: http://www.crohnsforum.com/showthread.php?t=50253 Its very possible that you may need to switch to something else.

 

[TwinkleToes]

Hi Cloud!

I'm currently in the middle of tapering off prednisone. I started out at 40mg and am at 25 as of today. My GI told me that after I taper off, I will need to go on either Imuran, Humira, or Remicade to get into full remission. I am currently on Pentasa as well and it seems to be working.

I had a colonoscopy/endoscopy one month ago, which showed severe inflammation. So, to have things go well, and the taper going well (minus my insomnia and 10lb weight gain) is a relief. Not looking forward to the new meds, but I'll do what I have to if it means I can stay healthy.

 

[Cloud123]

Twinkle Toes,

I'm glad things are working out for you with the prednisone. Also, I like the Osteen quote . Have you ever tried to taper off the pred before? It's interesting that if this is your first time, your doctor is already going for Humira or Remicade after the taper.

Today was my first day on 40 mg of Pred, so we'll see how it goes. Let us know how your taper goes!!

 

[TwinkleToes]

Thanks, cloud! I love Joel Osteen. He helps me stay positive. I have not tried to taper off before. My back-story is that I was dx'd two years ago as mild crohn's. So, I ate and drank as I pleased and it got bad within the past 6 months.

So, this is my first time on meds. My GI said the level of inflammation I have requires the heavier duty stuff. I am not looking forward to changing meds, but we'll see what happens.

 

[Patriciaxo]

Hey cloud!

Today is my first day off of prednisone! During the taper and even now i feel cramping before my BM's but when i'm done it's gone. That's the only thing I can think of that I have a problem with with the Crohn's and unformed stools. I havn't really had any symptoms come back (YET!.. crossing my fingers!)

(the side effects of pred. are the worst!, shakes, headaches, insomnia, rapid heart rate, weight gain, always hungry! lol..) blah blah blah

I am taking a maintenance medicine daily: Delzicol 800mg 3x daily.

 

[TwinkleToes]

Patricia - Did you have the symptoms all the way through your taper, or did they go away once you hit a certain dosage? I can't wait to be done!

 

[Patriciaxo]

Twinkle toes: the symptoms started my 2nd week I was taking prednisone (40 mg)

All my symptoms have been the same no matter what dosage I was taking. (Although I stopped getting headaches when my dosage was lower!) also my insomnia got a little better and this is the first week (.75mg) I have been able to sleep pretty well!!
Hope your taper goes well Hun!! Xx

 

[Cloud123]

thanks Patricia!! Keep us posted on how it goes. Through all of my research I've found very few people who have been able to successfully taper off the pred without having to switch to 6-MP, Remicade, Humira, or some other "higher level" drug at the end of the taper. I'd like to stay on the mesalamine if I can.

 

[TwinkleToes]

I'm having a hard time thinking about going on imuran, remicade, or humira. I really like pentasa as well, but, my GI says it isn't just strong enough to deal with my inflammation.

 

[Jennifer]

Saw you guys were talking about Mesalamine, this would be a good read on how effective it is for Crohn's: http://www.crohnsforum.com/showthread.php?t=50253. Hope the tapering off Prednisone is going well.

 

[Daunting]

Hi Cloud and Everyone

I too have been doing the fun Prednisone taper, as of Saturday past I am now on 2.5mg and started Entocort 9mg on May 20/2013. Today I feel awful, so either its because the prednisone is too low or and the Entocort isnt working yet.
Is your Entocort working yet, normally how long does it take.?? I wish I knew how bad my crohns was I asked the doctor on my last visit what level my crohns was and he said not severe, so im assuming its moderate. Doctors ??

Wishing you the best.

Hugs and kisses.

 

[Hiedi]

Hi all!
I am still undiagnosed too but here's the thing...my GI put me on Pred 15mg for 14 days. Now 2 days without it and ALL my symptoms are coming back! Is this possible?

 

[Hiedi]

Also there was no taper just stop taking when gone...

 

[Mehita]

Yes, that's possible. What they call a pred burst, so no taper necessary. Why such a low dose though? My son is 80 lbs and they usually put him on 40 mg for 1-2 weeks and the. Taper by 5mg every week after that. Were they just trying to see if it helped? How are things now?

 

[lola99]

My symptoms always came back after a taper.I was on Imuran while taking prednisone but imuran just didn't work. I have mild to moderate crohns. I switched to humira and finally got my life back. I was sensitive to the steroids and they gave me horrible bruises and I started developing symptoms of Cushing's after just 2 months of about 25 mg. Everyone is different though.

 

[Searchingforhealth]

My daughter was diagnosed with severe indeterminate crohns/colitis and has been on Prednisone for 3 months and has tapered to 15 mg. she takes 2 Llialda pills a day we just got results of crp and sed rate and they are normal
We are keeping her on a Gluten free, sugar free, lactose free diet and her weight is back to normal. Doing the fecal cal protectin test tomorrow.
We are going to try LDN in a few weeks. Her GI said entocort wasn't going to work because the inflammation was in the colon and small intestine.
I want to avoid biologics like Remicade.

 

[lblair]

I was off of predisone for one week then had a bad flare I think went to the ER he put me back on 40mg was down to 10mg and the loose stools started again!!!! URHGGGGG!!!!

Back up tp 20mg for 2 weeks then will start the taper!!! I have been on steriods since March!!! Way to long!!!!

 

[Searchingforhealth]

Lisa, Is the Humira helping your flare? Are you having side effects from it or the prednisone?

 

[lblair]

Searchingforhealth,

Yes Humira has helped with the falers but it is still so frustrating!! I have been on predisone way to long!! I started on Imura and had allergic reaction to that after one month so for 2 months I was just on Steroids!!

My bathroom trips have cut in half and for 2 days after my injections I usually don't have a BM. But have another symptoms by the 4th day I'm in pain so not sure it seems to help on 20mg of steriods but that is not a long term fix and need to do something different.

I think that he might need to add Methotrexae?? Not sure of the spelling something has to give!!!!!

Thanks

 

[Hiedi]

Yes, that's possible. What they call a pred burst, so no taper necessary. Why such a low dose though? My son is 80 lbs and they usually put him on 40 mg for 1-2 weeks and the. Taper by 5mg every week after that. Were they just trying to see if it helped? How are things now?

Yes, my GI wanted to see if any of my symptoms would go away while on Prednisone and they did! I see her on Friday so I guess I just need to wait and see what they decid...

 

[vj156]

Hi,
I was diagnosed with crohn’s disease this year beginning and had a couple of steroid doses already for flare.I am currently on Azathioprine and I don't have much issues with Diarrhea,touch wood.
But I keep getting nausea,a lot of tummy discomfort and slight pain off and on ,though my inflammation levels are normal,as of august .
I couldn't see my gastroenterologists as she was out of town and had to consult her husband(who was a GI too) due to these ongoing symptoms.
He straight away put me on steroids 25mg again , for 2 weeks and then I started tapering down to 20,15,10,5mg every 5 days and finishing with 2.5 mg today.So the dose began on Oct 1 st.
I am not happy to take steroids due to the side effects.
As I started to taper from 15mg , I have been getting tummy pain on and off, nausea, indigestion, heartburn etc and it happens as soon as I take the pill .

Though I have always been around 45 kgs ,during pregnancy I was 60 kgs and now I am only 38 kgs n 5 feet .
I am feeling so down with my weight and weak because of steroids .
I even had a couple of bowel motions today with burning in my rectum which is not normal for me.
I feel so angry to have taken steroid for no reason .
Is it normal to have these symptoms while tapering steroid ? Especially pain in tummy ? Should I wait and see how I feel after I finished my pred dosage ?
Any help and advice appreciated !
Thanks Heaps !