Failure to respond to steroids

[Joss]

I have had crohns for 20yrs and its been on the whole maintained well on Asacol, with perhaps a yearly flare which responded quickly to steroids.
However have been having problems since Christmas, my GP put me on 30mg prednisolone in March which didn't do a lot and then I had a colonoscopy in April which showed multiple ulcers in terminal ileum (am going for an MRI scan next week) My consultant put me on 40 mg of Prednisolone for 2 weeks then tapering off by 5mg a week. On 40mg there was a slight improvement but still getting pain and diarrhoea particularly when eating fibre. They tried me on Azathioprine but I got the bad sad effects.
I just spent 2 days in hospital having intravenous hydrocortisone 400mg a day but only had 3 100mg doses at is was giving me seriously bad headaches.
The next stage was 6MP but now my specialist nurse is saying if steroids don't put me in remission 6MP won't, she is speaking to my consultant this afternoon to see what he thinks but I am worried now as where we go from here.
I asked her what next and she was vague, saying she will speak to the doctor, but again stressed 6MP may not work if steroids haven't. Anyone had this experience, what happens if steroids don't work.

 

[Dukeis]

Years ago when there wasn't as many drugs to be used steroids failed me. They were just starting to use 6mp for IBD. 6mp worked really well for me and I was able to be off steroids. I don't know why she thinks 6 mp will not work for you. Steroids & 6 mp are 2 complete different class of meds and work differently.

 

[nogutsnoglory]

Steroids are a good short term therapy. A drug like 6mp takes several weeks to kick in and is considered a maintenance therapy. I think it's irresponsible of your doctor to say 6mp probably won't help if steroids didn't. We all respond differently and some do horribly on one drug and phenomenal on another.

The only way drugs definitely could not help is if you have scar tissue and you are obstructed. If you have inflammation there is probably a drug out there that will help you.

 

[alex_chris]

The next stage was 6MP but now my specialist nurse is saying if steroids don't put me in remission 6MP won't, she is speaking to my consultant this afternoon to see what he thinks but I am worried now as where we go from here.

I asked her what next and she was vague, saying she will speak to the doctor, but again stressed 6MP may not work if steroids haven't. Anyone had this experience, what happens if steroids don't work.

Hey there Joss. As said above by others, there is no reason that 6mp or azathioprine shouldn't work if steroids don't work.

Today the standard long-term treatments are either immunosuppresives (6mp or azathioprine) or biologics (remicade, humira, cimzia) with more and more people with just moderate Crohn's going for biologics or a biologics/immunosuppresive combination therapy. As mentioned above by others, steroids today are used as short-term meds to fight flare ups only and the more they can be avoided the better.

Even though you are a veteran of 20 years Crohn's, it might be good to read up on biologics and immunosuppressives (either here on the forum or by just googling) and then also talking to a good GI specifically about these treatment routes.

All the best,
A

 

[PsychoJane]

I am guessing that they might be saying the 6MP might not be appropriate if the steroids are not working because the 6MP requires form 6-8 weeks to gain their efficiency. This might be why they told you this but like everyone else say, because you fail the steroids does not mean you will fail de 6MP or Azathioprine. I think it might be more like "what can the disease management be" in a time like this one as normally steroids are used on short course to quickly diminish the severity of a flare.

When I got my first flare, biologics were not approved for pediatric use and the Ped Team could not wait to see if 6MP were gonna work or not and so, due to the fulminant crisis, I headed to surgery. Now, even if they require times for certain, biologics can induce a quick response (humira showed results within the 2 weeks following the induction dose in my case) in a lot of people. So it might be an avenue to consider.

 

[jimcon24]

I'm on prednisolone for the 3rd time. First 2 times it was like waving a magic wand but the 3rd time it has not nailed the flare at all although it has done enough to keep me functioning well. I always assumed the steroids would fix things in an emergency. I also started on a 30mg dose, perhaps it was simply too low, it seems most others start on a higher dose.

 

[Catherine]

My 17 year old daughter started her third course of steroids at 50mg for 4 weeks before tapering. She is 62kg. Maybe the dose is not high enough.

 

[crohns1996]

A good route to take might be to consider liquid nutrition for a few weeks to induce a short term period of better health and symptoms will be relieved considerably, I've been on total enteral nutrition 3 times and it really does work. Although the reasonably good health never lasts long for me because I've never really been in proper remission, the effects from this only lasted a couple of weeks but it gives you enough time to plan what to do next, biologics might be a good route, I've had infliximab/remicade and have now started on humira because of a reaction to infliximab but it did help me. Good luck