Started off really well five days in awful again? Normal?

[AlvinElias]

Hi, I'm on pred and first three days finally felt like getting my life back but then day 5 feel tired, unwell, probably worse than before (like regular points over last two years). I'm on 30mg so wondering if that's not enough or par for the course with pred? Can you feel such an improvement so rapidly then crash within a few days?!

Background: had a torrid time last two years, basically despite being under a Crohn's nurse/consultant neither picked up on fact my constant fatigue, being unwell, weight loss, severe abdominal pains, dodgy bowels etc were due to Crohn's coming back with a vengeance since surgery in 2008 and relatively symptom free no meds etc. Fecal Cal was 1000+ at one point and hasn't gone below 800 since 2017. Nurse put it down to mild gastritis in stomach...Finally after doing own research and finding out fecal cal isn't affected by stomach challenged them and they did a colonoscopy and MRI confirmed stricture at anastomosis (? Old surgery at terminal ileum) lots of ulcers, quite severe activity. Likely been going on since 2016. In that time to be fair to them basically all bloods except albumin and phosphate and iron all normal crazy so one imagines must be confusing but not overly impressed given toll it's taken.

Any advice appreciated as now wondering what's going on i.e. is disease flaring up again or pred causing symptoms?

 

[Tuff]

It could be side effects. How are the bowels? You could give the nurse a call just in case. I'm usually on 25mg and it kicks in right away. I get ravenously hungry so be careful you don't overeat if you don't want to gain weight.

 

[AlvinElias]

Hi, bowels are okay although Tbh over past two years been mostly okay but on coleselvam so probably why. I think I'll take your advice and give her a call just in case.

 

[my little penguin]

If you have two years wirth if danage it may take a while for the pred to truly kick in
Weeks or more
Depending how much inflammation vs scar tissue

Some need a boost of meds with it (immunosuppressants or biologics )
Since one your done with steroids maintenance meds will need to take over
Theses take 6 weeks to 3 months to kick In so most start maintenance same time as steroids.

Additionally there is een (formula only no solid food ) that can boost things and heal inflammation-they use it for 6-8 weeks in kids (my kiddo was dx at age 7 -now 15 - done een a few times )
Modulen (semi elemental) and neocate splash (elemental) are used in the UK (?)
Ds uses neocate jr chocolate as a supplemental- to boost biologics /mtx

Good luck

 

[AlvinElias]

Hi I might ask about liquid diet too in that case as might help stricture too. I vaguely recall something about inducing remission and being almost as effective as steroids. Was always very anti meds but at the moment I'd take anything to sort this out. Just so disappointing to have several days rapid improvement only to crash again so soon.

Big thanks from me and I'll put all this to the Crohn's nurse see what she says/if she's heard of it.

 

[Tuff]

You should get on a maintenance med, biologics or immune suppressants or both. Crohn's can do severe damage without too many symptoms. I'd rather be on medications than have surgery. Hopefully they can sort it out and get you some relief.