HealingWell
Search Close Search
☰

I should never say "No doc not getting any of the side effects" dumdum dummmmmm

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/4/2014 7:06 PM (GMT 0)
Saw my GP about two weeks ago and he was surprised when I said I wasn't getting any of the side effects from entocort like I do with pred.  Curses foiled again!  It took 11 weeks, but the cotton brain that i get horribly with prednisone is creeping in with the entocort.  I honestly forget what I am saying halfway into a sentence.  My husband talks to me and asks if I even heard what he just said - honestly I am not tuning you out Honey!!!!  I have to make myself really focus when my boss stops by my desk.  I'm pretty sure I dropped a few "uhs" on his last two trips!  Since I am pretty sure these icy cold/burning hot spells are the meds not hot flashes now, that makes two side effects.

Next time GI recommends entocort...I am saying give me pred instead...if I am going to get the side effects any way, at least I could get the relief that entocort has only slightly given and it took a long time for it to do anything for my gut.

Time to go make my to do chart for this weekend....just to not forget anything!

Posted 4/4/2014 7:38 PM (GMT 0)
Entocort has far fewer short term side-effects, but in the longer term the side-effects are similar to Pred. For that reason, I don't see much point to Entocort: it really isn't any safer to be on for a long time than Pred. I took Entocort once and found that it didn't work quite as fast or as well.

So yeah, it's better to take steroids as little as possible, but if you are going to go on them, might as well make it the dread Pred.
Posted 4/4/2014 7:53 PM (GMT 0)
bleh! i hate side-effects. I've started getting swollen feet/achy joints in the last couple weeks, which my CNP thinks might be the humira, which i've stopped. going back on remicade on the 15th, so we'll see how that goes. at least no more self-injection!

then there's the awful constpiation from opioids. causes more pain than i had to start with!

and prednisone. by far the scariest, for me. i get moonface which is fine, whatever, doesn't bother me... but i also get angry. really angry. for no reason, or very little reason. even when i'm normal, if i lose my temper, it is absolutely incandescent. I generally maintain physical control, but I say horrible, mean things at a very high volume... and my voice carries even in normal tones. but normally, it takes me a long time to get to that point, and usually i have time to cool down and reset my fuse. prednisone just removes the fuse entirely. While on pred after diagnosis, i became FURIOUS that my parents used the lightswitch in the hallway in such a way to make it so that "On" was down and "Off" was up. I was absolutely seething all day. When I was on pred again before my surgery in '12 I ended up shouting at my mom because I was annoyed with something else entirely. I don't even remember what it was. Once I realized what was happening, I explained, but I couldn't stop shouting because I was still so angry so she just let me shout myself out. Such a good mom.


Anyway, i feel ya. Anything that messes with the way my brain works... the CORE of who I am as a person, is scary as hell to me.
Posted 4/4/2014 8:54 PM (GMT 0)
To be fair, it doesn't take a lot to make me absolutely seething >_>.

It's weird, though. I do have anger issues, which you think Pred would make miles worse, but it never did. I had only good things from being on 40mg and I seriously would have stayed on 40mg Pred for the rest of my life if I could have done. It made me more energetic and outgoing and gave me more confidence; I miss that.

But it's a dangerous drug, it really is. I dodged a bullet with any long-term physical side-effects (the worst I got was osteopenia), but I became physically dependent on it in the end. I was relapsing months and then weeks/days after stopping the Pred; finally, I was feeling pretty ill at <20mg and ended up going back up to 40mg for a few weeks until surgery. (The surgeon told me there was no point trying to wean off, as I'd be given steroids during surgery anyway.)

The withdrawal symptoms after stopping them for the final time after surgery were also bad and lasted weeks, if not months.
Posted 4/5/2014 12:08 PM (GMT 0)
NCOT
I did not know that long term side effects for Entocort are the same as pred. I am very surprised.
I was on entocort for a couple of years. Entocort is very expensive in the states but is positioned as way safer than pred. Something about "does not effect the entire body, just the small bowel". Pred is almost free and Entocort is over $1,000 per month.
Can you point to studies or other information that can give the true picture of entocort. I think it would help folks as they make the decision one vs the other.
Thanks
Dave
Posted 4/5/2014 1:54 PM (GMT 0)
Wow Habs, that sucks. When I was on Entocort (I can't remember how long, but probably no more than six months), I don't remember any side effects, but then again, I don't think it helped me at all. Prednisone certainly helps, but I get a lot of the side effects.

I completely understand your frustration with the cotton brain. I feel like I'm constantly trying to get out of a brain fog and can't concentrate on work and have a hard time remembering things or listening to people/remembering what they say. I assume it's because of the Lyrica and Gabapentin, but the last time I weaned off the Gabapentin (in February) to try to help these side effects, my chest pain came back immediately, so it's a lose-lose situation.
Posted 4/5/2014 4:45 PM (GMT 0)

dfdavedf said...
NCOT
I did not know that long term side effects for Entocort are the same as pred. I am very surprised.
I was on entocort for a couple of years. Entocort is very expensive in the states but is positioned as way safer than pred. Something about "does not effect the entire body, just the small bowel". Pred is almost free and Entocort is over $1,000 per month.
Can you point to studies or other information that can give the true picture of entocort. I think it would help folks as they make the decision one vs the other.
Thanks
Dave

Just to let you know I'm not ignoring this post, but my brain has stopped working. I've found a few things, but nothing which is terribly straightforward: I can't find one single 'true' picture of Entocort. Anecdotally, too, patients have had different experiences with long-term Entocort; even doctors can't seem to agree on it.

Also, most of the studies compare Entocort against a placebo or 5-ASA; I'm really trying to compare it to Pred here. Ideally, I'd like to know how 2 years of 3/6/9mg Entocort stacks up against the equivalent doses of Pred, but such a study simply doesn't exist, so I'm going to have do a certain amount of interpretation and extrapolation.

Anyway, I'll post a few links later on. In the meantime, my brain is hurting, so I'm gonna take a break for now.
Posted 4/8/2014 9:41 AM (GMT 0)
OMG, I didn't know that Entocort's long term use had bad side effects.. I've been on it since June last year, so would also love the know more about it and it's side effects
Thanks
✚ New Topic ✚ Reply