Dependant on Entocort

[Grant]

I'm facing facts. Last week I said I had a really great day & the next a bad one. Well the bad one & everyday since has coincided with me going down to one Entocort capsule. And this has been the pattern all year. Everytime I've gone down to one I've had pain, bad diarrhea & feeling a bit grim in general.
I've been on Entocort now for 11 mths, maybe the Methotrexate will eventually do its job sufficiently enough & I can get of the steroids. But for now I'm back uptp 2 capsules & will ring the nurse asap.
Sorry to heap my problems on here again but feeling a bit low.
Rgds
Grant

 

[Cat-a-Tonic]

Hi Grant, I had a few issues tapering Entocort as well. The first time I tried to go from 9 mg down to 6 mg, I felt awful. I went back up to 9 mg for another 6 weeks, and fortunately the next time I tried to taper down, I felt okay. Sometimes the body just isn't ready to taper. I was on Entocort for a total of 7 months before I finally came off of it successfully. Your body just might not be ready to taper. I hope the nurse can help you out and reassure you too. Good luck!

 

[spcwife23]

hi grant, im not on escort but my body is dependant on prednisone.. everytime i come off the 5mg to nothing it flares badly, till i have to get back on it and i been on it as long as you been on escort.. i was put on humira and the end of the month trying to get off prednisone again and praying it works this time.. im praying for you that some how the fiigure how to slowly get you off of it.. good luck and i hope your feeling a little better today

 

[Grant]

Tks Cat-a-Tonic & spcwife123, I've not been on Methotrexate that long & maybe longterm that will enable me to come off Entocort.
Rgds
Grant

 

[beth]

Sounds like you need to up the Humira to weekly.

 

[Grant]

I dont know Beth, I'm very confused today. I always have blood due to hemorrhoids but today it was worse & if I was a betting man I'd say that some of it came from my problem area (dilated stricture). I was also as white as a sheet immediately afterwards. I'm beginning to think that it might be better to have it removed as its only a very small area thats causing me grief. It goes against what I once said on here about surgery only as a last resort but strictures usually need removal @ some stage. The way I'm thinking is that i would go for it provided they would agree to some strong preventative meds for longterm relief. Whether that means Humira or Methotrexate weekly I dont know, but I do know that after the last two surgerys the Crohns has come back very quickly in mths or in the second time weeks.
I've got some thinking to do.
Tks & Rgds
Grant

 

[beth]

Maybe you need to do both: surgery to get the problem area sorted, and weekly Humira to stop it all coming back so fast. Weekly makes such a big big difference.

 

[Grant]

Tks Beth I think you may well be right.
Rgds
Grant

 

[Astra]

Hang on in there Grant, it's a toughie.
Entocort is the lesser of 2 evils, 3mg per day should help to maintain til the Metho kicks in.
But have a good chat with your consultant about all your options.
xxx

 

[Grant]

Tks Joan, up until last week I was feeling a good deal better. I started to hope that this was it. Bit of a conflab going on about my Methotrexate dose, was on 20mg but it was knocking me for 6 for 4 days out of 7 post ***. I'm waiting on the hospital to let me know about 15mg but was told not to *** last friday with 20mg. Hoping for a quick resolution for that so I can get back onto it & hopefully longterm knock the Entocort on the head.
Fingers Crossed, Tks for replying & keep well
Grant