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Entocort Weaning Problems...Advice Please?

I'm sure this question has been asked before but looking for some advice of people currently going through this.

I have been on Entocort since February. Started at 9mg (3 pills). Started weaning down to 2 in late May. Weaning from 3 pills to 2 pills was tough and I was in withdrawal symptoms for weeks. I started Remicade on June 20th and have had 2 loading doses so far. The second dose was on Thursday and it was rougggggggggh.

I am weaning off the entocort and have been doing 2 pills for two days in a row then 1 pill the third day for the past 2 weeks. I am now trying to alternate 2 pills/1 pill every other day to get off of this stuff.

The withdrawal symptoms are crap. Headache, dizzy, nauseous, tired as hell and joint pains. This, tied in with the remicade infusion side effects just have me feeling like hell.

My question is...does anyone have any remedies (natural or whatnot) that helped them with steroid withdrawl/Remicade infusion side effects? At this point I am willing to try anything... I am desperate to get off of steroids and just let the Remicade do its thing... Thanks kindly.
 

my little penguin

Moderator
Staff member
Remicade can take up to 6 to eight weeks to work
Ds was not to wean off steriods until he hit the 6 week mark

He has done many many weans (hence adrenal insufficiency now from too many steriods)

Tapering in by 1-2 mg of pred for 2 weeks at a time was easiest on the system to try to restart the adrenal gland per Endo

Realize you were in 40 mg of pred (9 mg of entocort )
So that’s a big jump quickly
You might need to take it slower

Sometimes the body needs reduced at 1 mg of pred peromth is your on longer term steriods which after 4 weeks of daily use you are

Please talk to your doc
They may have you stay at 2 a day for a few weeks
Then a few weeks at 1 a day

If your body is ready to wean
Then withdrawal symptoms for ds only lasted two days at each lower level

If not they lasted much longer
 

Lynda Lynda

Member
Does my calendar match what my GI told me to do ? I can't send attachments through their portal ?
I understand the 40mg Prednisone for 3 days and 30mg Prednisone for 5 days. It's when I have to take two different steroids on the same days which confuses me. And this is not a slow taper.
P.S. : The very first sentence should say PREDNISONE not BUDESONIDE. My doctor cannot even type instructions, or maybe his staff wrote it.
I'm a very organized person, so it looks correct to me. Good Grief.
 

Attachments

It makes senses to me. It looks like there will be an overlap of both steroids but this is when Pred is further reduced ... looks like part of the weaning process, and then the lower dose of pred is dropped and you continue with just the Budesonide. Seeing the calendar is easier to understand it all.
 

Lynda Lynda

Member
It makes senses to me. It looks like there will be an overlap of both steroids but this is when Pred is further reduced ... looks like part of the weaning process, and then the lower dose of pred is dropped and you continue with just the Budesonide. Seeing the calendar is easier to understand it all.
Thank You for answering. I wanted another set of eyes to look at it. I'm very organized and always take my medications properly. Take Care. 🌻
 
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