Prednisolone dilemma :-(

[Carpediem1979]

Hi
Having had Crohns for many many years now after begging the surgeons to cut me open 17 years ago to find the cause of the excruciatingly terrible pain and weight loss (every test could not show anything) .. They found a 10cm piece of bowel (small) which had perforated !!!!
Luckily since then .. Almost 18 years later I have been perfectly fine with the odd flare up from time to time.

3 years ago my son was born and was diagnosed with CF .. Since then I have never had so many flare ups and hospital admissions !!!! Due to anxiety and stress I fear. Having exhausted most meds .. Infliximab (allergic reaction to it) humira (cannot really see this working without the aid of prednisolone steroids) .. I am now petrified that surgery is the only option
I just cannot ween off the steroids ! When taking 15mg or more I feel fantastic !!!! But the minute (literally) I get down to 10mg (2 tablets) I am in immense pain ! Stomach feels like I have a lead balloon in there .. Severe pain on lower right side of bowel area !!!! Severe aching joints ! Sooo tired !!!! I thought it was the steroid withdrawal as I have been on prednisolone to keep the symptoms at bay for many many months !!!! Cannot remember when I started taking them it is so long ago .. I know it is not healthy being on these but they keep me going ! The pain disappears within two hours of upping these things ! ..
I am adamant it is the condition flaring when I cut down the steroids as the pain shouldn't be there if the humira was working ! So steroid withdrawal is not the cause I DONT THINK anyway :-(
My biggest fear with surgery is having to have a colostomy bag ! I just cannot have or cope With one of these especially caring for my son and Ill fiancée ! I just cannot !!
Anyone's thoughts on my story so far would be most appreciative
Regards
Paul

 

[my little penguin]

Can you ask your Gi about a slower withdrawal????
Sometimes when you have been on steroids a while or you sensitive too them your body starts to act like a toddler .
Ds was on them for 4.5 months
It took forever to wean from 10 mg down
Finally his Rheumo suggested 1-2 mg wean every two weeks
And it worked
Granted he would get worse for 24-48 hours of the lower dose - pain you name it
But .... Then he was ok on the new lower dose
Sometimes it just takes longer
Can you ask your Gi about lowering the dose slower and seeing what happens after 3 days instead of a few hours .
Trust me btdt with Ds (he is only 11.)
It was rough but he got through

 

[jeffp155]

Sorry to hear but I'm going through the exactly the same thing, I'm 38 yrs old, was diagnosed with crohns 12 years ago, but have had bowel problems: blood a fistures since I was 10. Was tested because of an abscess internally up my rectum, and haven't had any problems since and haven't taken any meds, until recently a near complete blockage has kept me in and out of er. Prednisone brings me back to health and after the scipt is over it comes back and with a vengeance

 

[birdonastick]

Getting on prednisone is easy. Being on prednisone is a bargain with the devil, it keeps you going but usually exacts a heavy price. Getting off long term pred can be a science and an art.

Every MD will say that an increment of 2.5 "doesn't matter" but on the tail end of a taper it definitely can, there just isn't enough interest to fund a big study I guess.

Sounds like you've gotten stuck in steroid land for a while (my sympathies, I know this one firsthand) if you think about it, the jump from 40 to 30 is shaving off 25 percent of your dose. Maybe your body can handle that one. OK - the jump from 15 to 10 is shaving off a full third of your dose. That's an incrementally more challenging thing to do. Going from 10 to 5 is a lot to ask, and often too much to ask.

I had this illustrated for me in living color: I pulled my 5's after a year and a half trying to get off the stuff, and woke up with the worst pain in my entire CD experience in my knees of all places. Like someone was going to town on them with a bat. I was laughing and high off the pain, it was just stunning and absurd. Took my 5mgs - instant relief. Tapered to 2.5 instead, no problems. My GI was all "well I'm surprised, but I guess it's possible..." That's two of us!

Don't be concerned about this necessarily, obviously this is a freaky weird thing that doesn't usually happen. My point is that steroid withdrawl *can* sometimes be very dramatic in its presentation, it's not always subtle. Don't ignore major intestinal symptoms, obviously, but maybe don't be surprised by feeling like an absolute mess as you taper off smaller doses.

For me, biologics have been the real ticket away from this stuff, maybe discussing Humira and Stelara with your MD would open up some possibilities? Methotrexate is also often overlooked and doesn't work for a lot of people, but sometimes it does nicely as a maintenance med or a supporting med.