5ASA/Mesalamine Club

[DustyKat]

This is a place to provide information for other parents about you and your child's experiences with 5ASA/Mesalamine, in all its forms...oral, suppositories, enema,

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 5ASA/Mesalamine 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 5ASA/Mesalamine?

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

3. Where is your child's inflammation located? Small intestine, large intestine, or both?

4. Was your child on only mesalamine or were they prescribed other medication at the same time? If others, which?

5. What dose and regime of 5ASA/Mesalamine was prescribed?

6. Has the dose been changed over time and why?

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

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

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

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

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

12. Did 5ASA/Mesalamine work for your child and how long was it prescribed for (how long has your child been on it)?

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

14. How many times has your child flared while on mesalamine?

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

16. 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?

17. How often are bloods drawn?

18. How is the cost of the medication covered?

19. Any other tips or information?


Bold Numbers: New or rephrased questions (last edited 27/12/12)


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 5ASA article located here in the wiki. Also the 5ASA/Mesalamine Forum located here.

Thanks,
Dusty

 

[Dexky]

1. Why was your child prescribed 5ASA/Mesalamine?
---EJ was prescribed Asacol when first dxed with crohns in Dec. 09. It seems a fairly common first med.
2. What dose and regime was prescribed?
---Originally 2400mg/day divided into 3 doses taken daily with meals.
3. Has the dose been changed over time and why?
---When he was on 6mp and achieved clinical remission(per bloods) he was taken off Asacol(cold turkey). Bleeding soon commenced. We went back to 1600mg/day with food and have been afraid to try removing it since.
4. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
---None
5. Is there a preference for brand or generic preparations?
---EJ has only used Asacol.
6. Are there any preparations that need to be made to make the tablet easier to take?
---They can be difficult for small children I would imagine but the Asacol pills must NOT be crushed because they are coated to target specific areas.
7. Is there a time of day that is preferable?
---With meals.
8. Can you still administer tablets if you are unwell or have an infection?
---Yes
9. Did 5ASA/Mesalamine work for your child and how long was it prescribed for?
---Initially, it stopped all EJ's outer symptoms. It worked again when we stopped and restarted it. He has remained on 1600mg divided by 2 daily.
10. If it didn't work or treatment has been discontinued why is that?

11. How is the treatment monitored for success (i.e. what tests and how often)?
---bloods every 3 months though the main consideration is not Asacol but Humira's efficacy.
12. 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?
---see above
13. How often are bloods drawn?
---every 3 months
14. How is the cost of the medication covered?
---my insurance covers 100% prescription costs
15. Any other tips or information?

 

[Devynnsmom]

1. Why was your child prescribed 5ASA/Mesalamine? Devynn was prescribed PENTASA ASA when she was *unoficially* diagnosed with crohn's in Dec 2009 (8 years old), after having pain and symptoms since she was approx 18 mos old.

2. What dose and regime was prescribed? Originally 1000 mg daily, divided into 2 doses. Am and PM

3. Has the dose been changed over time and why? Dosage was upped twice, one extra pill added each time. Until she was on 2 in AM and 2 in PM

4. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with. No, nothing at all

5. Is there a preference for brand or generic preparations? I don't know. She had the pills that separate in water. We put them on a spoon with a drop of water, and then dipped it in apple sauce so she could swallow.

6. Are there any preparations that need to be made to make the tablet easier to take? We put them on a spoon with a drop of water, and then dipped it in apple sauce so she could swallow.

7. Is there a time of day that is preferable? We did 2 in AM after breakfast, 2 in PM before bed.

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

9. Did 5ASA/Mesalamine work for your child and how long was it prescribed for? It worked for a while. She was on it from Dec 2009- Mar 2012

10. If it didn't work or treatment has been discontinued why is that? In Mar 2012 she was on max dosage and still having symptoms, she had another upper and lower scope in Jan 2012 and they changed her diagnosis to an official Ulcerative Colitis and changed meds.

11. How is the treatment monitored for success (i.e. what tests and how often)? She would see the GI every 2 mos or so, blood was drawn, upper and lower scopes were repeated in Jan 2012

12. 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? pain and symptoms

13. How often are bloods drawn? Every 2 mos unless she was unwell in between.

14. How is the cost of the medication covered? It was covered 100% with my medical insurance.

15. Any other tips or information?

 

[lindbergh]

Hello, I am a 19 year old female in my sophomore year of college and I take Asacol/Mesalamine and I will try my best to answer your questions!
#1) I was prescribed Asacol because I was diagnosed with Crohn's disease this July, 2012.
#2)I take 3 pills, 3 times a day, each pill is 400 mg
#3) Yes, I started out at 6 pills a day (400 mg pills) and they then increased me to 12 a day but my body reacted poorly to 12 so they dropped me down to 9 pills a day and that has been working wonderfully for me for the past 4-6 months.
#4) I have not had any reactions to this medication. It has been a walk in the park!
#5) I started taking name brand Asacol but just 2 weeks ago I switched to Mesalamine (which is the generic of Asacol) because Mesalamine is MUCH cheaper than the brand name. At this time the generic is unavailable in the United States, so I buy my medicine through a Canadian Pharmacy.
#6) It says to take with water, however, I have taken mine with Coca Cola and I like I said it has been working wonderfully for me! So you can really take it with whatever you want. I also usually take my pills at the time of my meals just to remind myself to take them.
#7) Breakfast, lunch and dinner- Easiest to remember that way!
#8) Yes, I have had a sinus infection and I was able to take my medicine. But I would still talk to your doctor.
#9) It is working! I've been on it for almost 6 months!
#10) N/A
#11) Doctors visits, and blood tests/ other tests
#12) Frequent bathroom visits, blood in stools, my blood tests not improving or getting worse, me not feeling well are things they look for in determining if it is working or not.
#13) Every time I go to the doctor. So like every 2-3 months.
#14) My insurance covers it only after a $1000 deductible then 80/20 after that, but we don't hit the deductible by going through the Canadian Pharmacy so either way we end up paying for the medicine.
#15) Stay on it/don't give up, it does take a little while to kick in and if you can't afford the medicine look into the Canadian Pharmacy!!!
I hope this helps!!!
Sincerely,
Keri

 

[izzi'smom]

1. Why was your child prescribed 5ASA/Mesalamine?
Upon diagnosis of Crohns colitis

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

3. Where is your child's inflammation located? Small intestine, large intestine, or both?
Large intestine
4. Was your child on only mesalamine or were they prescribed other medication at the same time? If others, which?
Concurrently with Prednisilone
5. What dose and regime of 5ASA/Mesalamine was prescribed?
pentasa 500mg 2x/day
6. Has the dose been changed over time and why?
Was increased, decreased, stopped-no change in symptoms-increased to see if it would help, temporarily discontinued as a se can be worsening of symptoms
7. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
No

8. Is there a preference for brand or generic preparations?
NO
9. Are there any preparations that need to be made to make the tablet easier to take?
We dumped the granules in applesauce
10. Is there a time of day that is preferable?
no
11. Can you still administer tablets if you are unwell or have an infection?
yes
12. Did 5ASA/Mesalamine work for your child and how long was it prescribed for (how long has your child been on it)?
We were on Pentasa for 5 months. It didn't help at all.
13. If it didn't work or treatment has been discontinued why is that?
It didn't work. We were trying to use a 5asa to wean off prednisilone but were unsuccessful
14. How many times has your child flared while on mesalamine?
I would say 4 times in 5 months.
15 How is the treatment monitored for success (i.e. what tests and how often)?
Our GI does very little testing. We monitor by symptoms.
16. 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?
We monitor symptoms.
17. How often are bloods drawn?
rarely
18. How is the cost of the medication covered?
insurance
19. Any other tips or information?

 

[Savannah's mom]

1. Why was your child prescribed 5ASA/Mesalamine? IBD-both Crohn's and Ulcerative Colits

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

3. Where is your child's inflammation located? Small intestine, large intestine, or both? Savannah's scopes showed inflammation from her throat to her bottom 75 out of 100 biopsies had inflammation (they weren't able to finish her colonoscopy because of severe spasms)

4. Was your child on only mesalamine or were they prescribed other medication at the same time? If others, which? started with only Pentasa but added Entocort and other meds later.

5. What dose and regime of 5ASA/Mesalamine was prescribed? takes 2 250mg capsules 3 times a day

6. Has the dose been changed over time and why? no, she has been on the same does since August 2011

7. Did your child have any adverse/allergic reactions? no
If so what were they and how was it dealt with.

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

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

10. Is there a time of day that is preferable? no, just every 8 hours

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

12. Did 5ASA/Mesalamine work for your child and how long was it prescribed for (how long has your child been on it)? yes with Entocort and she has taken it for the last 17 months.

13. If it didn't work or treatment has been discontinued why is that? n/a

14. How many times has your child flared while on mesalamine? several small flairs no hospital stays

15 How is the treatment monitored for success (i.e. what tests and how often)? blood work, over all health weight ect. every 4 - 6 months

16. 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? returning symptoms bad blood results. So far all is good

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

18. How is the cost of the medication covered? insurance

19. Any other tips or information? take the meds as described and talk to your doctor!

 

[ChampsMom]

1. Why was your child prescribed 5ASA/Mesalamine? Alex was prescribed Pentasa in 2010 when he was first diagnosed with Crohn’s Disease

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

3. Where is your child's inflammation located? Small intestine, large intestine, or both? Initial scopes shows ulcers throughout his esophagus, stomach and small intestines (as well as in his mouth) and mild inflammation in his colon at the terminal ileum.

4. Was your child on only mesalamine or were they prescribed other medication at the same time? If others, which? Initially on prednisone in conjunction with the Pentasa and prevasaid. Slowly weaned off the pred.

5. What dose and regime of 5ASA/Mesalamine was prescribed? Initially (first year) he was on 1500 mgs/day (2 tabs in the morning, 1 in the evening).

6. Has the dose been changed over time and why? After the first year when he was clinically doing well, but his inflammation markers were “a hair high of normal,” the doctor wanted to change his meds to 6mp and/or try EEN – I requested to try a higher dose of Pentasa given his numbers were not *bad* and he appeared well. Our GI concurred and increased his dose to 3500 mgs/day (2000 mgs in the morning and 1500 mgs/in the evening).

7. Did your child have any adverse/allergic reactions? No.

8. Is there a preference for brand or generic preparations? He has done great on Pentasa. We tried Lialda for a very brief period (about 20 days) however found that within a week he was more tired, got a bad headache and had some cramping (he hadn’t had a cramp in almost 2 years – we switched right back to Pentasa and everything is back to “normal”.

9. Are there any preparations that need to be made to make the tablet easier to take? Nope. He’s just picky on drinks – he drinks A LOT of G2 (Gatorade 2).

10. Is there a time of day that is preferable? Per doctor’s instruction he splits the dose 3500 mgs = 2000/1500 (am/pm).

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

12. Did 5ASA/Mesalamine work for your child and how long was it prescribed for (how long has your child been on it)? Yes! We are 3 years since diagnoses, now age 16. He had lost over 20 lbs. (I think it was 27 lbs) by the time we had a diagnoses & he was a small child to start. He weighs about 135 now and stands 5’10” and is still growing. Has a great appetite, eats a modified diet, takes nutritional supplements and vitamin D.

13. If it didn't work or treatment has been discontinued why is that? n/a

14. How many times has your child flared while on mesalamine? None, thus far (Thank God...)

15 How is the treatment monitored for success (i.e. what tests and how often)? First 18 months he was monitored every 3 months (blood work, height, weight, “hands on exam” (rectal check, abdominal check, mouth check, etc…). Since then, every 6 months – same process. Also bone density scan in the first year, supposed to repeat in 3 years.

16. 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? Inflammation markers, protein levels – being out of whack. How his BMs are, if he’s cramping, how he is feeling. Possible re-scoping in a year or so pending how he is doing.

17. How often are bloods drawn? Initially every 3 months. Now every 6 months.

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

19. Any other tips or information? Do your research. Realize what works for one child will not work for another… But don’t try to cover a mosquito bite with a cast. Stronger medicines may be necessary for your child, however don’t be afraid to ask can Pentasa, Lialda or another 5ASA work for my child in conjunction with an initial dose of prednisone or with EN. But when it is time, be ready and knowledgeable about the other meds you might need to use. And I recommend pray about it (I realize that is a personal statement, however, every kid is personal to someone…) God bless!

 

[Jennifer]

I'm thinking that this should be shared in here: http://www.crohnsforum.com/showthread.php?t=50253

 

[DustyKat]

Sorry, only I have only just seen this Crabby.

Shared how? Linked?

Dusty.

 

[Jennifer]

I believe I meant to link it in that thread to help people gain more information about Mesalamine. I thought this thread would take off more than it did yet 6 responses is better than none.

 

[DanceMom]

1. Why was your child prescribed 5ASA/Mesalamine? A was prescribed Pentasa at her initial diagnosis.

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

3. Where is your child's inflammation located? Small intestine, large intestine, or both? both

4. Was your child on only mesalamine or were they prescribed other medication at the same time? If others, which? Initially she was only prescribed Pentasa. It wasn't enough so Prednisone was added, then 6-mp.

5. What dose and regime of 5ASA/Mesalamine was prescribed? She takes 1000mg twice a day.

6. Has the dose been changed over time and why? No, same dose.

7. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with. No, definitely no reactions and I don't believe she's had any side effects either.

8. Is there a preference for brand or generic preparations? I don't believe it comes in generic form. I wish it did because it is her most expensive medicine at this time!

9. Are there any preparations that need to be made to make the tablet easier to take? They are rather large pills but she has no problem swallowing them.

10. Is there a time of day that is preferable? She takes them with breakfast and dinner.

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

12. Did 5ASA/Mesalamine work for your child and how long was it prescribed for (how long has your child been on it)? It wasn't enough on its own but she takes it in combination with other meds.

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

14. How many times has your child flared while on mesalamine? We are currently working through a flare. We had about 6 good weeks with no symptoms so hoping to get back to that place.

15 How is the treatment monitored for success (i.e. what tests and how often)? She has labs done every few weeks and we keep in close contact with GI to report any symptoms.

16. 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? GI relies heavily on the reporting of symptoms.

17. How often are bloods drawn? Every few weeks right now due to the 6-mp.

18. How is the cost of the medication covered? We have a $35 co-pay for the prescription.

19. Any other tips or information? I think Pentasa is a good place to start for some kids. It can be helpful and has very little risk of side effects or reactions.

 

[DustyKat]

The answers relate to Matt only. Sarah has never been prescribed 5ASA's.

1. Why was your child prescribed 5ASA/Mesalamine?
We have a new GI that has different views to the previous GI. The new GI believes, supported by studies, that Pentasa is beneficial in maintaining remission following ileocaecal resection. The advantage is only small but he felt that in view of the severity of Matt's presentation after diagnosis then any advantage he can gain is worth it.

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

3. Where is your child's inflammation located? Small intestine, large intestine, or both?
Ileum (small bowel).

4. Was your child on only mesalamine or were they prescribed other medication at the same time? If others, which?
Imuran, plus various supplements.

5. What dose and regime of 5ASA/Mesalamine was prescribed?
Pentasa 500mg tablet twice daily.

6. Has the dose been changed over time and why?
Not long commenced and no changes have been made.

7. Did your child have any adverse/allergic reactions? If so what were they and how was it dealt with.
No.

8. Is there a preference for brand or generic preparations?
The GI indication on the prescription that it was to be brand only.

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

10. Is there a time of day that is preferable?
No, he has one at breakfast and one at bedtime.

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

12. Did 5ASA/Mesalamine work for your child and how long was it prescribed for (how long has your child been on it)?
I dont know if it is making a difference and he is already in remission. I assume it will be a long term medication.

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

14. How many times has your child flared while on mesalamine?
Nil.

15. How is the treatment monitored for success (i.e. what tests and how often)?
It isn't as such but Matt already has bloods done every two months due to Imuran.

16. 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.

17. How often are bloods drawn?
Every two months but not related to Pentasa.

18. How is the cost of the medication covered?
It is subsidised on the PBS. One script costs $36.10 and is for 100 tablets.

19. Any other tips or information?
The tablets are quite big so not an issue for my son as he is 20 but it does state in the literature that you can dissolve the tablets.

Dusty.

 

[upsetmom]

1. Why was your child prescribed 5ASA/Mesalamine?
Crohn's symptoms weren't controlled with sulfasalazine or salofalk.

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

3. Where is your child's inflammation located? Small intestine, large intestine, or both?
Large

4.Was your child on only mesalamine or were they prescribed other medication at the same time? If others, which?
Imuran was added because the Pentasa alone wasn't enough.

5. What dose and regime of 5ASA/Mesalamine was prescribed?
2500mg

6. Has the dose been changed over time and why?
No

7. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
No

8. Is there a preference for brand or generic preparations?
Brand l don't we had a choice

9. Are there any preparations that need to be made to make the tablet easier to take?
No preparation but they are huge tablets and she complains every time she takes them, they either crumble or get stuck in her throat.

10. Is there a time of day that is preferable?
1500mg in the morning and 1000mg in the afternoon

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

12. Did 5ASA/Mesalamine work for your child and how long was it prescribed for (how long has your child been on it)?
Alone she still had symptoms so Imuran was added. Has been on Pentasa for about a year

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


14. How many times has your child flared while on mesalamine?
Was flaring every few weeks on Pentasa alone.

15 How is the treatment monitored for success (i.e. what tests and how often)?
Blood tests every 3 months

16. 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?
Symptoms and blood tests

17. How often are bloods drawn?
3 months

18. How is the cost of the medication covered?
I only pay $5.90 for a month with my health care card.

19. Any other tips or information?
My daughter didn't think it was doing much so she decided to stop the Pentasa once she started Imuran but within 2 weeks she was sick again.

 

[Mehita]

1. Why was your child prescribed 5ASA/Mesalamine?
-as his initial maintenance med for inflammation

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

3. Where is your child's inflammation located? Small intestine, large intestine, or both?
-both

4. Was your child on only mesalamine or were they prescribed other medication at the same time? If others, which?
-mostly Pentasa only, though he also had several rounds of prednisone

5. What dose and regime of 5ASA/Mesalamine was prescribed?
-at first 750mg/day, then upped to 1000 mg/day

6. Has the dose been changed over time and why?
-continued to have flare ups

7. Did your child have any adverse/allergic reactions?
-no
If so what were they and how was it dealt with.

8. Is there a preference for brand or generic preparations?
-there is no generic available

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

10. Is there a time of day that is preferable?
-don't know, but he took the Pentasa with dinner

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

12. Did 5ASA/Mesalamine work for your child and how long was it prescribed for (how long has your child been on it)?
-no, it didn't work and he was on it for about a year.

13. If it didn't work or treatment has been discontinued why is that?
-he had a stricture and eventually had a small bowel resection, post-surgery treatment was Pentasa until another flare up, then switched to Azathioprine.

14. How many times has your child flared while on mesalamine?
-at least two? maybe three?

15 How is the treatment monitored for success (i.e. what tests and how often)?
-i don't think it was?

16. 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?
-us showing up in the ER!

17. How often are bloods drawn?
-almost monthly because his symptoms kept recurring

18. How is the cost of the medication covered?
-by insurance after out of pocket is met. Prior to out of pocket it was $400/month!

19. Any other tips or information?