Some questions about Entocourt

[crohniekid]

R has recently been prescribed Entocourt to help him get into remission. He's on 9mg for 3wks, then 6mg for 3wks, then 3mg for 3wks. So I've been reading the Entocourt/Prednisone threads but have a couple of questions:
1) how long before you started to see results?
2) if Entocourt failed how long before you and your GI decided to throw in the towel?
3) do kids get more/less side effects or is it a bit of Russian roulette?

Thanks for your responses...I always think of a billion questions AFTER I leave the GI's office! :ybatty:

 

[Paxxy]

R has recently been prescribed Entocourt to help him get into remission. He's on 9mg for 3wks, then 6mg for 3wks, then 3mg for 3wks. So I've been reading the Entocourt/Prednisone threads but have a couple of questions:
1) how long before you started to see results?
2) if Entocourt failed how long before you and your GI decided to throw in the towel?
3) do kids get more/less side effects or is it a bit of Russian roulette?

Thanks for your responses...I always think of a billion questions AFTER I leave the GI's office! :ybatty:

I went on that when first diagnosed. It took 3 weeks for the crohns symptoms to stop. Unfortunately they came back when I got to 3mgs. Now I'm 3 weeks into pred.

 

[Farmwife]

Grace was on Pred at the age of 4. She took 20mg a day and then tapered. Total of 4 months
Now she's on low dose pred at the age of 5. She started at 5mg. and now is 2.5mg with no dead line set.

1- It worked great the first time. With in a day or two I saw improvements. At her current low dose I don't see much difference.
2-That will depend on symptoms and labs.
3- Russian Roulette


:hug:

 

[Maya142]

M has been on both Entocort and Prednisone.
With Entocort (Started at 9mg, tapered over 3 months or so)
1) how long before you started to see results? --- About a week
2) if Entocourt failed how long before you and your GI decided to throw in the towel? --It worked!!
3) do kids get more/less side effects or is it a bit of Russian roulette? --- No side effects with Entocort, my daughter says it's her favorite drug because it helps quickly and no side effects!

With Pred, it helped within 2 days, but she had lots of side effects -- increased appetite (which is a good things for her!), mood swings, "moon face," nausea etc.

 

[Patricia56]

I'm not a doctor and can only speak from my experience (my son was on Entocort at one time) and what I've seen others report but some kind of results should be seen fairly quickly - within a week. Of course if the child is very sick it is likely to take a while for a full response but some improvement in symptoms should happen before then.

Deciding when to throw in the towel is why you have a pediatric GI. They have studied for up to 12 years and been in practice however long and they are the expert. Unless you feel unhappy with your GI (in which case I strongly encourage a 2nd or 3rd opinion) then I would generally follow their advice on that question. What I would expect is if there has been some improvement but not as much as hoped then the 9mg dosing would be continued for a little longer to see if that helps. If there has been no improvement then I would expect to come off the med on a taper. But I am not a doc and that is a very good question to put on your list for every time you consider starting a new med.

Entocort is less likely to induce obvious side effects the way prednisone does but it can and does in a small number of children. It is a powerful topical steroid and they think about 12-20% is absorbed into the body. So those sensitive to it will react. Research has shown that it causes the same growth delays as prednisone despite the reductions in other side effects.

 

[Patricia56]

It's a good idea to write down your questions and observations ahead of time and take them with you to appointments with a copy for the doctor.

This memory aid may help you when considering changing treatments:

B - what are the Benefits
R - what are the Risks
A - what are the Alternatives
N - what happens if we do Nothing
D - Decide

 

[crohniekid]

I guess I should've maybe given some background! I suspected that the EEN wasn't doing it for R so my husband and I discussed the possibility of prednisone or remicade as those were the two other drugs mentioned to us by the GI after R's scopes as alternative treatments to the EEN. We agreed that we'd do what the GI suggested (who we really like so far).
So when he brought Entocort into the mix I was taken a little off guard (had a whole list of questions about Prednisone).
I asked how long before you start to see relief? He said about 4-5 days. But on the Entocort/Prednisone threads many of the people don't start to see results for months...so I was wondering if maybe kids were different. We also only have a short prescription so I was wondering if after 3 wks if there are little/no results if we would looking at a different treatment or a longer dose of steroids??? I never thought to ask this at the office because everything I read about prednisone talks about its almost immediate results....
And sometimes I just get sidetracked or am somewhat scared to ask the GI in front of R because I'm trying to make it seem like this time it's going to work and not show my doubts/concerns. It's a little easier here where he is not listening to everything. Do any of you ask your children to leave during appointments?

 

[DustyKat]

We have not used Entocort here so will speak personally from the Prednisone side of things.

1) how long before you started to see results?

Prednisone, as a rule, is very fast acting, as in some people seeing results with 24 hours. Although many people report that second and subsequent doses take longer to kick in. Entocort is primarily a topical steroid, it acts directly on the bowel, so generally speaking takes a little longer to see the results. I think the GI is about right in his estimation. That said, it should not take either of these meds months to work.

2) if Entocourt failed how long before you and your GI decided to throw in the towel?

The guideline we were given with Pred and Imuran was…if there weren’t good objective and clinical markers at 6 weeks then he would move to Humira. As it was we didn’t get even close. Complications set in at 3 weeks and surgery became our only option.

3) do kids get more/less side effects or is it a bit of Russian roulette?

Entocort should not give you the same level of side effects as Prednisone does. Prednisone is systemic and Entocort topical but you will still get some systemic overflow from Entocort. Entocort can potentially lead to the Pred type side effects if used for extended periods of time.
It certainly can be a game of Russian roulette, again not so much with Entocort as it is with Prednisone. I do think with Pred though that it is more the exception than the rule that you don’t get the common side effects. The only time my son got the Pred side effects was when he was in hospital on IV steroids.

My children were older when diagnosed so they have always stayed for the entirety of the consult. Having said that I have liaised with the doctor outside of appointment times and discussed any concerns or tests I wanted raised at the appointment. Again, with older children it has been opposite and I give them the opportunity to speak with the doctor alone.

Dusty. xxx

 

[Tesscorm]

No experience with steroids but I understand about asking questions in front of your son, for the same reasons you mentioned.

My son was also older when diagnosed, so I was more in Dusty's situation and, after asking all my questions, sometimes offered to leave so he and/or GI could discuss issues in private.

But, when possible, I would try to ask pro/con questions so my son wouldn't see my fixation on the 'omg, what if it doesn't work'! :lol: So, rather than asking only 'what will we do if it doesn't work?', I would first ask questions assuming it did work, ie 'what happens next after it works'... and then ask 'but what if it doesn't'. As my son is older, I also wanted to begin preparing him to eventually manage his own care so... this may not be as much of an issue for you yet but, following the apptmt, I would explain that it wasn't that I expected the treatment to not work but that I simply wanted to know what Plan B would be, if necessary... Eventually your son will see your questions as 'normal' - when we go to apptmts now, my son usually asks 'mom, I don't want to take too long, do you have a lot of questions again? How can you always have questions?' :lol:

 

[MamaHenn]

Our situation is a bit different b/c my son is not having the "normal" symptoms (no D, pain, etc.). His only symptoms are poor weight gain and occasional bloating. Within about 3 days of starting entocort his appetite improved and he is eating better. Thankfully he hasn't experienced any negative side effects (knock wood). He has been on entocort 9 mg for just about a month now. Sorry I can't be of more help.