Prednisone/Entocort

[DustyKat]

This is a place to provide information for other parents about you and your child's experiences with Prednisone/Entocort.

It is also an area to ask questions and please bear in mind that there is no such thing as a dumb question. If you haven't found an answer to what you are seeking then there is every likelihood that it has never been asked and therefore you won't be alone in wanting to know, so ask away!

This is a list of questions for those parent's that have travelled the Prednisone/Entocort path and hopefully by answering them newbies to the treatment will have many, if not all, of their questions answered.

1. Why was your child prescribed Prednisone/Entocort?

2. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?

3. Was your child on only Prednisone/Entocort or were they prescribed other medication at the same time? If others, which?

4. What dose and regime/taper was prescribed?

5. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.

6. Is there a preference for brand or generic preparations?

7. Are there any preparations that need to be made to make the tablet easier to take?

8. Is there a time of day that is preferable?

9. Can you still administer tablets if you are unwell or have an infection?

10. Did Prednisone/Entocort work for your child?

11. If it didn't work or treatment has been discontinued why is that?

12. How is the treatment monitored for success (i.e. what tests and how often)?

13. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?

14. How often are bloods drawn?

15. How is the cost of the medication covered?

16. How many courses of Prednisone/Entocort have been taken since diagnosis?

17. Any other tips or information?


Bold Numbers: New or rephrased questions (last edited 30/12/12)


Thank you to those that are able to contribute to gathering of this information and if you think of any other questions that would be useful please let me know and I will add them.

For those wishing additional information please have a look at the Prednisone article located here in the wiki. Plus the Entocort article located here. Also the Prednisone/Entocort Forum located here.

Thanks,
Dusty

 

[Catherine]

1. Why was your child prescribed Prednisone/Entocort?
At dx for severe weigh loss and severe pain

2. What dose and regime/taper was prescribed?
30mg per day, reducing by 5mg per week

3. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
Nil

4. Is there a preference for brand or generic preparations?
No

5. Are there any preparations that need to be made to make the tablet easier to take?
Likes to take with cordial due to taste

6. Is there a time of day that is preferable?
Morning

7. Can you still administer tablets if you are unwell or have an infection?
Yes

8. Did Prednisone/Entocort work for your child?
The first course she was in bearable pain after 3 days and back at school after 5 days

9. If it didn't work or treatment has been discontinued why is that?


10. How is the treatment monitored for success (i.e. what tests and how often)?
Short treatment only

11. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?
N/a

12. How often are bloods drawn?
As per aza schedule which was taking at same time.

13. How is the cost of the medication covered?
On PBS, $5 approx for 60 5mg tablets

14. How many courses of Prednisone/Entocort have been taken since diagnosis?
2 courses

15. Any other tips or information?

 

[izzi'smom]

1. Why was your child prescribed Prednisone/Entocort?
Upon initial dx of Crohns along with Pentasa

2. What dose and regime/taper was prescribed?
15mg twice a day. We tapered by 5 mg/week, but Izz was steroid dependant and tapering increased symptoms over time.

3. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
No
4. Is there a preference for brand or generic preparations?
No
5. Are there any preparations that need to be made to make the tablet easier to take?
We got orapred in a liquid suspension
6. Is there a time of day that is preferable?
no
7. Can you still administer tablets if you are unwell or have an infection?
yes
8. Did Prednisone/Entocort work for your child?
Initially, but efficiacy work off eventually
9. If it didn't work or treatment has been discontinued why is that?
Eventually didn't help at all; went to Remicade
10. How is the treatment monitored for success (i.e. what tests and how often)?
Symptoms. We rarely got bloodwork while on Pred unless symptoms changed drastically

11. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?
none
12. How often are bloods drawn?
rarely
13. How is the cost of the medication covered?
insurance less copay
14. How many courses of Prednisone/Entocort have been taken since diagnosis?

15. Any other tips or information?
We experienced some rough side effects, huge water retention and mood swings while on pred.

 

[DustyKat]

Sarah has never taken steroids as her diagnosis was made during emergency surgery. This is Matt's experience:

1. Why was your child prescribed Prednisone/Entocort?
Prescribed at diagnosis along with Imuran and Flagyl.

2. What dose and regime/taper was prescribed?
40mg for 3 weeks and then taper 5mg every week. This initial regime did extend a bit due to hospitalisations and the administration of IV steroids.

3. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
Nil.

4. Is there a preference for brand or generic preparations?
No preference.

5. Are there any preparations that need to be made to make the tablet easier to take?
Not for us.

6. Is there a time of day that is preferable?
Morning, due to the tablets potential to cause sleeplessness.

7. Can you still administer tablets if you are unwell or have an infection?
Yes.

8. Did Prednisone/Entocort work for your child?
I personally don't believe it had the maximum effect. I do believe it helped stabilise him but no more than that.

9. If it didn't work or treatment has been discontinued why is that?
N/A

10. How is the treatment monitored for success (i.e. what tests and how often)?
Blood tests, specifically inflammatory makers.

11. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?
Blood tests, physical symptoms.

12. How often are bloods drawn?
They were being drawn weekly at the time but that would have had more to do with Imuran than anything.

13. How is the cost of the medication covered?
Covered by the PBS but comes in much cheaper than the cost of a full script.

14. How many courses of Prednisone/Entocort have been taken since diagnosis?
One. He did suffer complications 3 weeks after diagnosis that required two hospitalisations and 3 courses of IV Hydrocortisone, each course was 5 days. It was only on his third course of IV steroids that he developed any of the usual side effects that are associated with steroids and his was an increased appetite and slight moon face. He did not experience any side effects on oral Pred.

15. Any other tips or information?
Definitely a medication to be taken in the early morning.

 

[Savannah's mom]

Entocort EC 3mg (Budesonide) x3 in the am

I edited this because I thought it maybe helpful to know Savannah is 10 symptoms started when she was 4-5 started seeing a GI April of 2011

1. Why was your child prescribed Prednisone/Entocort? Initially she was prescribed Entocort because Pentasa was not decreasing her symptoms so 30 days after starting the Pentasa her doctor started EN 3mg x3 every morning (started Sept 2011)

2. Is your child diagnosed with Crohn's disease or Ulcerative Colitis? IBD is being treated for both Crohn's and Ulcerative Colitis

3. Was your child on only Prednisone/Entocort or were they prescribed other medication at the same time? If others, which? Savannah is on several meds see the signature for the full list

4. What dose and regime/taper was prescribed? None, said maybe this summer after school is out he will try to taper her off some meds doesn't think during school is a good idea

5. Did your child have any adverse/allergic reactions? n/a
If so what were they and how was it dealt with.

6. Is there a preference for brand or generic preparations? no

7. Are there any preparations that need to be made to make the tablet easier to take? no

8. Is there a time of day that is preferable? 30minutes before breakfast

9. Can you still administer tablets if you are unwell or have an infection? yes

10. Did Prednisone/Entocort work for your child? OH YES!! life changing drug.. been so happy for the first time in many years having a some what healthy active child!!

11. If it didn't work or treatment has been discontinued why is that? ....

12. How is the treatment monitored for success (i.e. what tests and how often)? no actually test have been preformed since starting her meds but in just a year and a half she went from 3% in weight to normal she went from 50lbs to 89 and looks beautiful now!! healthy she used to be skin and bones no color she simply looks healthy now!


13. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction? Thanking God no real issues since starting EN

14. How often are bloods drawn? every 4-6 months

15. How is the cost of the medication covered? Insurance

16. How many courses of Prednisone/Entocort have been taken since diagnosis? Savannah has been on Entocort since Sept 2011, no changes

17. Any other tips or information? nope