Update - not going well!

[PaulPhoenix]

Hi,

So last time I posted here it looked like I was pretty mild. Should have guessed it was too good to be true!

MRI showed 8cm in my terminal ileum and inflammatory stricturing in my descending colon prevented them looking much further via colonoscopy. I did get some lovely photos as part of my report though :yfaint: am I supposed to put them in a frame ?! Heh.

Anyway, they put me on Aza (imuran) 125mg eight weeks ago and gave me 40mg of Pred to take the inflammation down. Ok, it's a bit grizzly on it - but it's better than soreness and our old friend D!

Here's the thing: I can't get off the Pred without the D and soreness coming back. At 30 mg it flares up again. Is it just a withdrawal thing? Do I need to give the Aza more time to smother it? I can't just stay on Pred can I.

I'm trying to get in to see the GI but it's going to be a while!! Help, anyone?! :sign0085:

Paul
Crohns dx July 2011, terminal ileum & colon
Aza 125mg
Pred 40mg
Pentasa 4g

 

[Richard414]

I am currently on 30mg pred and 150 azathioprine but for pyoderma gangrenosum another inflammatory condition related to UC. It does take a while for the aza. to start helping and you may have to taper the pred. very slowly, a few mg at a time. Best not to stay on pred. but the important thing is to keep the inflammation under control. Make sure you are taking enough calcium and Vitamin D3.

 

[Angrybird]

Hi Paul, I had the same problem getting of the pred on two occasions. At your hospital do you have IBD nurses you can get in contact with? If you do I would contact them as one thing to try is a higher dose of Aza - I ended up being on 200mg. I then was able to taper of the pred much more easily. It has only been on other occasions that I have had real troubles gettng off it and ended up having to taper 2.5 mg on a monthly basis and ended up being on it for over a year each time. I hope this helps

 

[lookame]

I was put in lialda as my maintance drug but my disease is classified as severe. When I tapered off the prednisone I start the d when they found that out they added 6mp but there's still active disease. Since both medicines failed me they're now looking into remicade. Really this disease doesn't want to calm down. The good news is the drugs did a little bit, took the inflammation down from severe to moderate.

 

[PaulPhoenix]

Thanks for the replies.

AngryBird: I'll certainly ask about increasing the dose of the Aza. I keep reading that it can take 6-12 weeks to get a response anyway, so I reckon they're being a bit hasty in saying it's not working. I'm on just under 2mg/kg at the moment so they could easily increase that to 2.5mg/kg. It'd be a shame to give up on it so quickly after I've gone through all the tests and hassle of going on it!

If it doesn't work the options that I can think of are:

Different immunosuppresant (methox, 6-mp)
Mix in some budesonide (entocort)
Reduce the steriods more slowly
Pre digested liquid diet thingy
Biologics (remicade or perhaps humira)
IV steriods

Am I missing any, non-surgical options?!

 

[Richard414]

Paul...when I had flares of my UC I would go on a white rice diet for a few days. You cook it with more water than usual, like 3 H2O to 1 rice, so it is very soft. It was something I enjoyed the taste of (add some olive oil and salt), it filled me up and gave my intestines a chance to heal. I also do chewable vitamins multi., and extra C, E, calcium, D3, iron. If you can't get chewables, get capsules that are easier to digest than tablets.

 

[Grumbletum]

Hi Paul
I'd been on Pred for 5 months and Aza for two when my GI referred me to a surgeon cause of non-healing inflammation and an internal fistula. The fistula did heal by the time I got to see the surgeon. But the Crohns was still really active so they started me on Remi.
They kept me on the Aza as it helps prevent reaction to the Remi. I'm loads better after three infusions. They said they have to decide now if I should continue with the Remi, but the Aza will definitely be continued for an extended time as a maintenance drug.

 

[PaulPhoenix]

Richard: I'll try limiting my diet like that. I've been eating tons of -everything- since starting the steroids - fast food, chips... Curries.... maybe not the best flare food!

Helen: good news it's working for you! Did they try upping your Aza first? (must be bracing up where you are at this time of year!)

 

[Crohn's 35]

for pyoderma gangrenosum another inflammatory condition related to UC.

Actually I know a few who have PG and both have Crohns, so therefore not limited to UC. Stinks either way!

 

[Richard414]

sorry, didn't mean to imply PG was only related to UC . OK.

 

[Grumbletum]

Hey Paul
No they didn't up the Aza at that point and the surgeon actually told me that he thought it wasn't working. They have upped it since then and that's because I put on a lot of weight. I believe Aza dosage is weight related so they don't up it in the same way as they would with Pred.
It might be worth giving the Aza another month as the speed of effectiveness can be weight and metabolism related too.
And yes, bracing is an understatement!