Imuran/Azathioprine/6MP Club

[DustyKat]

This is a place to provide information for other parents about you and your child's experiences with Imuran/Azathioprine/6MP.

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 Imuran/6MP 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 Imuran/6MP?

2.Does your child have Crohn's disease or Ulcerative Colitis?

3. Does your child take any other medications in conjunction with Imuran. If so, which?

4. What dose and regime was prescribed?

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

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

7. Is there a preference for brand or generic tablets?

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

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

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

11. Was TPMT testing done prior to the first dose to help determine optimal dosage and to ensure your child wouldn't have a severe reaction?

12. Is your child's thiopurine metabolite levels (6-TGN and 6-MMP) monitored to make sure the medication is in its therapeutic range? If so, how often?

13. Did Imuran/6MP work for your child and how long was it prescribed for?

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

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?

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 Imuran article located here and the 6MP article located here in the wiki. Also the Imuran/6MP Forum located here.

Thanks,
Dusty

 

[DustyKat]

1. Why was your child prescribed Imuran/6MP?
Sarah: As a maintenance medication following surgery.
Matt: As an initial treatment at diagnosis which then became a maintenance med following surgery.

2. What dose and regime was prescribed?
Sarah: 50mg daily.
Matt: 50mg daily.

3. Has the dose been changed over time and why?
Sarah: Dose has never changed as she has stayed in remission. TPMT Tests were not available when she was diagnosed.
Matt: Dose upped to 100mg based on his weight and normal TPMT test.

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

5. Is there a preference for brand or generic tablets?
They both prefer the brand Imuran over the generic Azathioprine due to the finish on the tablets. The generic has a powdery finish which they don't like. (This is an interesting read)

6. Are there any preparations that need to be made to make the tablet easier to take?
No issues with taking tablets here but my children are older.

7. Is there a time of day that is preferable?
My children have had no issues with time of day.

8. Can you still administer tablets if you are unwell or have an infection?
Sarah: This has not been put to the test.
Matt: Continued to take Imuran with 2 abscesses and whilst on long term antibiotics.

9. Did Imuran/6MP work for your child and how long was it prescribed for?
Sarah: Has been taking it for 6 years as a maintenance medication following surgery. Has been in remission since the surgery so I assume it is working??
Matt: Has been taking it for 2 years and has been in remission since surgery 18 months ago. So again I assume it is working??

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

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

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?

13. How often are bloods drawn?
11,12,13:
Neither have had any further testing since surgery except for regular blood tests. Bloods are drawn every 2 months for both of them and the results of these coupled with physical symptoms, how they look and how they present (including baseline observations such as weight, height and abdominal palpation) is what used as a way determining their status.
Both have had episodes of abdominal/back pain since surgery was performed and imaging was performed for each them that returned normal results.

14. How is the cost of the medication covered?
It is covered under the PBS in Australia.

15. Any other tips or information?
Ensure when commencing this medication that blood work, including Liver Function Tests, is carried out weekly for the first 4 weeks. If everything remains normal it can then go out to fortnightly followed by monthly, two monthly and then 3 monthly. My personal preference is 2 monthly and believe that 6 monthly is too long.

Dusty.

 

[Catherine]

1. Why was your child prescribed Imuran/6MP?
At dx as although she level of disease was not great enough to move straight to imuran it was prescribed as the inflammation had already became chronic.
She also had severe anaemia, weigh loss and pain.

2. What dose and regime was prescribed?
50mg

3. Has the dose been changed over time and why?
Dose has been increase twice due weight gain. Now 100mg. Now 125mg
Increase due to very low level to 150mg

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

5. Is there a preference for brand or generic tablets?
Imuran

6. Are there any preparations that need to be made to make the tablet easier to take?
Needs to be taking with food

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

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

9. Did Imuran/6MP work for your child and how long was it prescribed for?
She level of inflammation are much reduced but she has developed a small fistula in the small bowel

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)?
Blood test and faecal calprotectin, repeat MRI

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?
Changes in blood tests and faecal calprotectin

13. How often are bloods drawn?
Once a week for the first 5weeks and now done every 2-3months

14. How is the cost of the medication covered?
PBS $37 per 100 50mg tablets, she now has a health care card and cost is $6

15. Any other tips or information?

 

[Dexky]

1. Why was your child prescribed Imuran/6MP?
---6mp was the first "big" px after crohns was dx
2.Does your child have Crohn's disease or Ulcerative Colitis?
---crohns
3. Does your child take any other medications in conjunction with Imuran. If so, which?
---Asacol
4. What dose and regime was prescribed?
---50mg/day taken at bedtime
5. Has the dose been changed over time and why?
---was discontinued
6. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
---none
7. Is there a preference for brand or generic tablets?
---no
8. Are there any preparations that need to be made to make the tablet easier to take?
---no
9. Is there a time of day that is preferable?
---we gave it right before bed because we were told it could cause headaches. EJ never complained of any problems with it.
10. Can you still administer tablets if you are unwell or have an infection?
---was never an issue but we were not told otherwise
11. Was TPMT testing done prior to the first dose to help determine optimal dosage and to ensure your child wouldn't have a severe reaction?
---yes
12. Is your child's thiopurine metabolite levels (6-TGN and 6-MMP) monitored to make sure the medication is in its therapeutic range? If so, how often?
---it was. At first monthly, then 3 monthly.
13. Did Imuran/6MP work for your child and how long was it prescribed for?
---It worked well in conjunction with Asacol for about a year but failed to maintain remission.
14. If it didn't work or treatment has been discontinued why is that?
---^^^was discontinued to try Humira.
15. How is the treatment monitored for success (i.e. what tests and how often)?
---bloodwork, fecal calprotectein(when there were blood problems), and annual scopes
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?
---bloodworks went south, fcp showed occult blood in stool, colon was inflamed on repeat scope
17. How often are bloods drawn?
---3 monthly while things were going well
18. How is the cost of the medication covered?
---insurance paid 100%
19. Any other tips or information?

 

[Crohn's Mom]

1. Why was your child prescribed Imuran/6MP?
~prescribed 6mp at dx for initial treatment along with prednisone; took for 1 year + then discontinued
~recently prescribed Imuran to be in combination therapy along with Cimzia
2.Does your child have Crohn's disease or Ulcerative Colitis?
~Crohn's
3. Does your child take any other medications in conjunction with Imuran. If so, which?
~Cimzia (also currently on Entocort taper to give Imuran time to work)
4. What dose and regime was prescribed?
~125 mg
5. Has the dose been changed over time and why?
~125 is the initial dose, and from what I understand the full dose for her weight
6. Did your child have any adverse/allergic reactions?
~no
If so what were they and how was it dealt with.

7. Is there a preference for brand or generic tablets?
~no
8. Are there any preparations that need to be made to make the tablet easier to take?
~it seems to be easier to take during meal times to avoid nausea
9. Is there a time of day that is preferable?
~she has found taking it in the evening before bed is easier to avoid extreme fatigue during the day.
10. Can you still administer tablets if you are unwell or have an infection?
~as far as we know, yes
11. Was TPMT testing done prior to the first dose to help determine optimal dosage and to ensure your child wouldn't have a severe reaction?
~yes
12. Is your child's thiopurine metabolite levels (6-TGN and 6-MMP) monitored to make sure the medication is in its therapeutic range? If so, how often?
~not that I'm aware of
13. Did Imuran/6MP work for your child and how long was it prescribed for?
~6mp did not work alone, took it for one year +
~Imuran has just been started approx. 2 weeks ago
14. If it didn't work or treatment has been discontinued why is that?
~symptoms became more severe while on 6mp; she also developed abscesses and fistulas ~ 6mp was discontinued after surgery and Cimzia started.
~ Imuran + Cimzia is still to be determined
15. How is the treatment monitored for success (i.e. what tests and how often)?
~ monthly blood draws will be done; also she will have a colonoscopy and upper endoscopy in approx. 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?
~I assume they will look at her liver enzymes on the blood draws to make sure they are not raising.

17. How often are bloods drawn?
~initially she will have a blood draw every 2 weeks for 6 weeks, then it will be once monthly.

18. How is the cost of the medication covered?
~ we have a small co-pay for this medication through our private insurance
19. Any other tips or information?
~if your child is taking this during the day time and experiences too much fatigue, i would recommend taking it in the evening.
~ also, since my daughter takes 125 mg, and the pills come as 50 mg tablets, she is required to cut the pills in half. However, we were told that if we weren't comfortable with cutting them, than it would be ok to take 100 mg one day than 150 the next and alternate this way. The problem I see here tho is that it is IMPERATIVE that you remember which day you took which mg, and make sure you are following it exactly. We choose to cut the pills in half.

 

[Catherine]

Have you looked into the 25mg pill. They come in both 25mg and 50mg in Australia. Interestly the cost the same.

 

[Crohn's Mom]

thanks Catherine, but I think it would be a big hassle with the insurance :shifty:

She's ok with cutting them, I was just putting that out there in case someone else isn't. Or now that you mention it, maybe they can get both mg pills as well

 

[Jenn]

1. Why was your child prescribed Imuran/6MP?

first prescribed 6MP thinking his Crohns was mild, had some success, switched to Remicade after fistula developed, started again to boost Humira

2.Does your child have Crohn's disease or Ulcerative Colitis?

Crohn's

3. Does your child take any other medications in conjunction with Imuran. If so, which?

Right now, Humira + 6MP

4. What dose and regime was prescribed?

25mg (half a 50mg tablet) once/day

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

Not at all yet, would based on weight increase

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

none

7. Is there a preference for brand or generic tablets?

I don't really know, we use generic - mercaptopurine

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

He couldn't swallow pills, so I crushed them and mixed with a little ice cream. Heard milk products can reduce effectiveness, so then mixed with a little applesauce. I wear a medical mask and gloves when cutting/crushing them. He can now swallow them which makes things lots of easier, but I still have to halve the pills myself.

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

Not that I know of, but I give it to him before bed.

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

Yes

11. Was TPMT testing done prior to the first dose to help determine optimal dosage and to ensure your child wouldn't have a severe reaction?

No. We did test for tuberculosis exposure though

12. Is your child's thiopurine metabolite levels (6-TGN and 6-MMP) monitored to make sure the medication is in its therapeutic range? If so, how often?

yes, at first every other week, now it's once/month

13. Did Imuran/6MP work for your child and how long was it prescribed for?

It helped - good SED, energy,, but not enough on its own (never added prednisone or anything at the beginning). It seems to be helping boost his Humira

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

When a new fistula developed, we determined it wasn't effective enough and went to Remicade

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

bloodwork once/month

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?

poor bloodwork, more complications

17. How often are bloods drawn?

once/month

18. How is the cost of the medication covered?

Insurance with copay

19. Any other tips or information?

wear gloves and a mask when cutting or crushing it. Caution while handling it.

 

[Ands]

This is a list of questions for those parent's that have travelled the Imuran/6MP path and hopefully by answering them newbies to the treatment will have many, if not all, of their questions answered.

11 year old son on 6-MP since 20 December 2012

1. Why was your child prescribed Imuran/6MP?
Continuous Low level inflammation after stopping azathioprine due to reaction.

2.Does your child have Crohn's disease or Ulcerative Colitis?
Crohn's

3. Does your child take any other medications in conjunction with Imuran. If so, which?
Only Sennoside

4. What dose and regime was prescribed?
50mg

5. Has the dose been changed over time and why?
Still on initial dose

6. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
So far so good, although last three days he has been super tired.

7. Is there a preference for brand or generic tablets?
No

8. Are there any preparations that need to be made to make the tablet easier to take?
No he can swallow them whole.

9. Is there a time of day that is preferable?
After doing research he takes just before going to sleep on empty tummy.

10. Can you still administer tablets if you are unwell or have an infection?
????? Don't know yet.

11. Was TPMT testing done prior to the first dose to help determine optimal dosage and to ensure your child wouldn't have a severe reaction?
Yes and all was ok.

12. Is your child's thiopurine metabolite levels (6-TGN and 6-MMP) monitored to make sure the medication is in its therapeutic range? If so, how often?
Not sure?

13. Did Imuran/6MP work for your child and how long was it prescribed for?
Still very early days.

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

15. How is the treatment monitored for success (i.e. what tests and how often)?
He's having blood tests weekly ATM. Not heard any results yet though.

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?
Not sure yet.

17. How often are bloods drawn?
Weekly for a month, and then monthly I think.

18. How is the cost of the medication covered?
NHS thankfully.

19. Any other tips or information?

This is still very new so not a lot to add ATM. Also with the Xmas Break he's been chilled at home so will be interesting to see what happens when he starts using more energy.

Xxxxx

 

[Crohn's Mom]

Side effects of Imuran/Aza ?

I'm trying to decipher if some of Gab's recent symptoms are due to the Imuran, or due to Crohn's. She is currently on Cimzia and Entocort as well, but Imuran is the only new med, so I don't believe the new symptoms are due to the later two, but I could be wrong.
Please help if you can with any opinions

*Extreme fatigue (even after switching to taking Imuran 125mg before bed)
*Excessive sweating throughout the whole day (previously only in the evenings or while sleeping)
*Increased joint pain
*Oily hair

 

[Ands]

We've been wondering the same for the past week. Fatigue been really bad, he's sleeping for 10/11 hours a night and still feeling tired and feeling quite sick.

I emailed IBD nurse this afternoon asking her opinion. I'll let you know.

Ands x

 

[Crohn's Mom]

Thanks Ands!

 

[Crohn's Mom]

Doctor doesn't think it's the Imuran, but we're waiting on test results here.

Ands have you heard back yet ?

 

[Ands]

I think we've turned a slight corner. The sickness feeling has mostly gone, so the only issue we have is tiredness but we are coming to the conclusion this is just how it is. He is coping with school so as long he is in bed to get his 10 hours sleep he is OK. I can't say this is what we want for him forever but fingers crossed a few more months and 6MP will be fully doing its job. His tummy cramps also seem to have settled so we are hopeful it is beginning to make a difference.

Xxxx

 

[Mehita]

1. Why was your child prescribed Imuran/6MP?
-He was prescribed Azathiorine after a bad flare and horrible scopes.

2.Does your child have Crohn's disease or Ulcerative Colitis?
-Crohn's Disease

3. Does your child take any other medications in conjunction with Imuran. If so, which?
-Currently taking prednisone, omeprazole, and vitamins.

4. What dose and regime was prescribed?
-Because he has an intermediate TPMT phenotype, he was presribed at 1mg/kg, so he's on an alternating dose of 25mg one day and 50mg the next.

5. Has the dose been changed over time and why?
-It hasn't changed, but I really think it needs too.

6. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
-No serious reactions though he has complained of a random joint pain that lasts 3-25 minutes and then goes away. Ankles, knees, wrists.

7. Is there a preference for brand or generic tablets?
-I'm not sure what we're getting... generic? One pharmacy gave us pills that crumbled when split. Our current pharmacy is giving us another brand that splits better.

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

9. Is there a time of day that is preferable?
-We heard nausea can be a problem, so he takes it at night before bed.

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

11. Was TPMT testing done prior to the first dose to help determine optimal dosage and to ensure your child wouldn't have a severe reaction?
-Yes

12. Is your child's thiopurine metabolite levels (6-TGN and 6-MMP) monitored to make sure the medication is in its therapeutic range? If so, how often?
-It was taken once and we were told it will not be done again unless the GI feels the dose isn't working or his dosage is changed.

13. Did Imuran/6MP work for your child and how long was it prescribed for?
-I don't think it's working. He continues to flare and seems to be getting worse.
-Update: after 6 months, he flared and developed an abscess and fistula. Levels were in therapeutic range tho, so GI said we needed to move to Remicade.

14. If it didn't work or treatment has been discontinued why is that?
-Yet to be determined
-Update: See #13

15. How is the treatment monitored for success (i.e. what tests and how often)?
-Lab work. CBC, liver tests.

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?
-More than two flares or worsening symptoms.

17. How often are bloods drawn?
-Labs every 3 months, though we've never made it that long w/o a new symptom.

18. How is the cost of the medication covered?
-Insurance. After out of pocket it's been $10/mo.

19. Any other tips or information?

 

[upsetmom]

1. Why was your child prescribed Imuran/6MP?
Because Pentasa alone wasn't working.

2.Does your child have Crohn's disease or Ulcerative Colitis?
Crohn's

3.Does your child take any other medications in conjunction with Imuran. If so, which?
Pentasa

4. What dose and regime was prescribed?
125mg

5. Has the dose been changed over time and why?
Yes started on a lower dose and worked our way to 125mg


6. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
At first a lot of nausea, vomiting and fatigue. We gave her anti nausea tablets that helped.

7. Is there a preference for brand or generic tablets?
No

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

9. Is there a time of day that is preferable?
After dinner

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

11. Was TPMT testing done prior to the first dose to help determine optimal dosage and to ensure your child wouldn't have a severe reaction?
No

12.Is your child's thiopurine metabolite levels (6-TGN and 6-MMP) monitored to make sure the medication is in its therapeutic range? If so, how often?
Yes every 3 months

13. Did Imuran/6MP work for your child and how long was it prescribed for?
It controlling symptoms most of the time.
Her ERS and CRP haven't changed much.

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


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

17. How often are bloods drawn?
3 months

18. How is the cost of the medication covered?
Healthcare card..$5.90

19. Any other tips or information?

 

[CDJ]

1. Why was your child prescribed Imuran/6MP?

Because of his tests fro crohns

2.Does your child have Crohn's disease or Ulcerative Colitis?

Crohns

3. Does your child take any other medications in conjunction with Imuran. If so, which?

pentasa 3000mg
Omeprazole 40mg
Buscopan 20 mg


4. What dose and regime was prescribed?

100 mg

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

Was stopped after a year due to extreme needle phobia, and mantained with just Pentasa. But due to a severe flare up earlier this year [ and finally conquered the needle phobia ] now back on it.

6. Did your child have any adverse/allergic reactions?

no
If so what were they and how was it dealt with.

7. Is there a preference for brand or generic tablets?

Brand

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

no

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

takes them in the morning

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

Yes

11. Was TPMT testing done prior to the first dose to help determine optimal dosage and to ensure your child wouldn't have a severe reaction?

No

12. Is your child's thiopurine metabolite levels (6-TGN and 6-MMP) monitored to make sure the medication is in its therapeutic range? If so, how often?


13. Did Imuran/6MP work for your child and how long was it prescribed for?

working so far

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

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

Blood tests, weekly, then 2/ 3 weekly. Now just starting monthly blood tests
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?
monthly
18. How is the cost of the medication covered?

we have no costs for this in the UK, it is covered under the NHS

19. Any other tips or information?