Flaring whilst tapering prednisolone?

[Elle97]

I posted about 3 weeks ago to tell you about my (almost) diagnosis and that I started taking 30mg prednisolone.
The plan is to take 30mg for a week and taper 5mg every week, so 30 for a week, 25 for a week, 20 for a week ....
When I was on 30mg, I started to feel the best I had in years(literally), my D was turning into normal formed poop, I was less tired ect. I then dropped to 25mg and my symptoms started going back to my 'normal'.
So I started taking 20mg last Thursday and Saturday/Sunday I started to get all my symptoms back with a vengeance. Yesterday I went to the toilet (D with blood and mucus) over 20 times and my stomach hurts so bad I'm not quite sure if this is related to the steroids or not? My doctor said if the steroids don't work then it's not crohns...
My doctor also give me a number for an IBD Nurse, would it be wise to call her ?
Sorry for the long post!

 

[Grumbletum]

Hi Elle. Yes, I would phone the IBD nurse. They are usually very helpful and it can really help to talk things through with someone. Sometimes it turns out that people need a bit longer on the higher doses of the steroid to get things under control.

 

[kelly81]

This happened with me - got down to 25mg and started getting symptoms back. I had a GI appointment and he put me back up to 40mg and started the taper again. Been fine since (I'm finished steroids now). Try and get in touch with your IBD nurse or GI doctor

 

[Amanda89]

If the steroid isn't working, it could still be Crohns, it might just be that it isn't working for you. I would definitely give the IBD nurse a phone, as Helen said they are usually really helpful!

 

[Elle97]

Thanks for all your replies! Shortly after this I started to get sicker and sicker and the GI nurse admitted me to hospital on the 27th Feb, only just got out today.
I had a really bad time in hospital. Nurses accused me of lying (apparently I peed the blood, it didn't come from my bottom?),refusing to give me pain relief and writing on my chart that my pain score was 0(no pain) and that I hadn't asked for painkillers. My GI doctor and surgeon went crazy with them when they found out.
Anyway, I had another OGD and sigmoidoscopy(had to have an enema-so painful!!) which revealed aphthous ulcers throughout the rectum and sigmoid colon. My stomach was that badly inflamed, the surgeon said it looked raw.
So, we restarted on the steroids and some other meds. I have to go back in 2 weeks to look at maybe starting a liquid diet, they also want to do a wireless endoscopy to look at my small bowel too.
I also over a stone in a week! I didn't know it could happen that fast...
I just wanted to let you know what happened!

 

[Amanda89]

That's horrible about the nurses I hope you're putting in a complaint? Hopefully with the steroids and med's you can finally start to feel better! What dose of steroids have you been put on?

 

[Elle97]

Yes, we are putting in a complaint!
For now they have put me on 30mg prednisolone because that dose worked before, I have an appointment to see my GI in 2 weeks, to properly sort out my medication and I am not tapering until I see her.

 

[empressentrails]

Hi, I am currently taking Prednisone for Crohn's and it seems to be working, but I would like to taper the dose and eventually stop taking it. Every time I try to cut back I get so sick with severe abdominal pain and severe vomiting (every ten minutes or so). I try to sleep but I wake up every ten minutes puking. I usually also get a migrane. My Crohn's flared up when I was pregnant and under a lot of stress, but looking back, I've been dealing with these same symptoms since childhood. Right now I am coming out of the hospital where I ended up after being dehydrated from puking so much and unable to get myself into balance. Sometimes I feel like a failure because I try to eat healthy and maintain a balance in my life, and Crohn's really disrupts my energy flow and balance. Now I am going to try eating a low-fat low-residue vegan diet, avoiding caffeine, running everyday, taking a multivitamin, and doing lots of yoga. Then, when I feel really ready, maybe I will take a few days off work to try to taper off of the prednisone. Any suggestions on how to make this go well? Has anyone tried cutting out Prednisone without replacing it with something else?

 

[Nancye50]

What's your dose and how quickly are you tapering? I'm still at 40mg and imagine it'll take close to a month it even more to taper down.

 

[LCATC945]

There is no way that you should have come off of pred that quick without being put on a long term med...I was on 30mg for 6 months then the doc started a slow taper. I got down to 5mg after 10months of taking It and flared again. Badly.

 

[lbligh]

I agree it is not true that it isn't Crohn's if prednisone doesn't work. My daughter has been diagnosed by endoscopy and colonoscopy, biopsy, and MRI. Definitely Crohn's. But she doesn't have nearly the positive response to prednisone that others seem to.

 

[texasagg02]

I am right there with you. My maintenance drug (pentasa) is no longer working for me. I have tried to tamper off my steroid twice now, both times flaring at week 3! Dr calling in new maintenance drug today and back to full dose of steroid. I am on Entocort which does not allow you to taper off as slowly since it only comes in one size (dose) pill. The first time I went from 3 pills a day to 2 a day for a month. This time I was doing 3 pills one day and 2 pills the other. I hope they figured out your meds!!!!!

 

[LCATC945]

Mine is imuran hopefully.