LDN (Low Dose Naltrexone) Club

[DustyKat]

This is a place to provide information for other parents about you and your child's experiences with LDN (Low Dose Naltrexone).

***As far as I am aware those using LDN are using tablets only so I will use that as the example. Please let me know if that is not the case and I will change the format of the questions.

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 LDN 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 LDN?

2. Did you have difficulty finding a doctor to prescribe LDN?

3. Did you have difficulty finding a compounding pharmacy?

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

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

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

7. What dose and regime of LDN was prescribed?

8. Was the dose related to the weight of your child? If so what was your child's weight?

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

10. What should people look out for in regard to fillers?

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

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

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

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

15. Did LDN work for your child and how long was it prescribed for (how long has your child been on it)?

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

17. How many times has your child flared while on LDN?

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

19. 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?

20. How often are bloods drawn?

21. How is the cost of the medication covered?

22. Any other tips or information?

Bold Numbers: New or rephrased questions (last edited 21/08/13)

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 LDN article located here in the wiki. Also the LDN Forum located here.

Thanks,
Dusty

 

[Jmrogers4]

1. Why was your child prescribed LDN? GI pulls teenage boys off Imuran if possible and puts on methotrexate, MTX was not an option for us as he had a reaction to it and he was fairly stable in regards to disease activity so no reason to move to biologic. GI had just read pediatric study and had a couple of other patients who wanted to start as well

2. Did you have difficulty finding a doctor to prescribe LDN? No, we were lucky in that it came at the GI's suggestion

3. Did you have difficulty finding a compounding pharmacy? No, We use a local pharmacy but gave them instructions on how it needed to be compounded. Quick Release and we used sucrose filler

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

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

6. Was your child on only LDN or were they on or prescribed other medication at the same time? If others, which? Only LDN but he was supposed to continue the Imuran for the first 3 months of LDN (Communication error with GI)

7. What dose and regime of LDN was prescribed? 4.5 mg/day but we take at bedtime (9:00pm) every night

8. Has the dose been changed over time and why? No, weighed 75lbs at start and started on adult dosage

9. What should people look out for in regard to fillers? Calcium carbonate is said to interfere with absorption so should not be used. Fillers can be lactose, avicel or if there are allergy issues sucrose

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

11. Are there any preparations that need to be made to make the tablet easier to take?
We have not found any. Ours comes in a very small capsule so it is quite easy to swallow

12. Is there a time of day that is preferable? He takes every night at 9:00pm

13. Can you still administer tablets if you are unwell or have an infection? Yes, He just recently had cellulitis and C-Diff and continued to take LDN

14. Did LDN work for your child and how long was it prescribed for (how long has your child been on it)? Yes, but it took quite some time to work, He started July 1, 2012 so just over a year at this point

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

16. How many times has your child flared while on LDN? We have had some very minor issues a few days of increased BM's or diarrhea, stomach pains, usually coincides with some other illness

17. How is the treatment monitored for success (i.e. what tests and how often)? Blood test every 3 months to start although we will be 6 months out at this point as last scheduled blood occurred at C-Diff diagnosis so GI wanted to hold off. If this upcoming blood looks good it will be blood tests and Fecal calprotectin every 6 months

18. 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 up, poor growth/weight gain, increase in symptoms or they show up again if they have not been present

19. How often are bloods drawn? 3-6 months

20. How is the cost of the medication covered? It's not but is fairly inexpensive, we pay about $35 per month

21. Any other tips or information? Patience. If I had to do over I would have kept him on Imuran for the first 3 months as he experienced a fairly significant flare for the first 2 months, after that it was slow improvement until about month 6-7. We also did Paleo/SCD during the first 2.5 months and then gluten free for the next 3 months

 

[Farmwife]

1. Why was your child prescribed LDN?
Colitis and joint pains.
2. Did you have difficulty finding a doctor to prescribe LDN?
NO.
3. Did you have difficulty finding a compounding pharmacy?
No.
4. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?
Colitis (Crohn's most likely)
5. Where is your child's inflammation located? Small intestine, large intestine, or both?
Both.
6. Was your child on only LDN or were they on or prescribed other medication at the same time? If others, which?
Just LDN at this time.
7. What dose and regime of LDN was prescribed?
Her dose was based on weight, so she takes 1.5mg and is to be taken before bed.
8. Has the dose been changed over time and why?
No
9. What should people look out for in regard to fillers?

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

11. Are there any preparations that need to be made to make the tablet easier to take?
No
12. Is there a time of day that is preferable?
Before bed
13. Can you still administer tablets if you are unwell or have an infection?
Yes
14. Did LDN work for your child and how long was it prescribed for (how long has your child been on it)?
3 months and has worked good.
15. If it didn't work or treatment has been discontinued why is that?
N/A
16. How many times has your child flared while on LDN?
1 mini flare at the beginning of taking this drug.
17. How is the treatment monitored for success (i.e. what tests and how often)?
Blood test to check for normal CRP and SED. Stool test to check for no inflammation. Scopes showing improvements. She does this every 3 months.
18. 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 in the blood, stool, and or scope. If she flared.
19. How often are bloods drawn?
Every 3 months
20. How is the cost of the medication covered?
Out of pocket. Only 13 US dollars.
21. Any other tips or information?

 

[Malgrave]

Thanks a lot for this!
It would be also interesting to know the weight of the child (in relation to the dose)...

 

[Jmrogers4]

Added his weight under question has dosage changed. But for others dosage in the pediatric study by Jill Smith was based on 0.1 mg per kg.

 

[Farmwife]

Yeah that^^^

 

[DustyKat]

Weight question added.

Thanks Malgrave.

 

[Lindseyw4]

Bumping this group! Would like to know more!

 

[Farmwife]

Wow, it's been so long since LDN days.

It didn't work for my Grace.
Matter of fact while on it she got more autoimmune issues.
Perhaps just a coincidence but it still makes me wonder.

 

[TK83]

Sorry would it be possible to add a question for the persons country. I live in the U.K. and it is my understanding that it is difficult to get this prescribed for Crohn's as it is not licences for Crohn's treatment in the U.K. I would be really interested to hear if anyone has had any success in getting it prescribed in the U.K.

 

[Jmrogers4]

Check out the LDN threads, might be able to find more info on UK there. If I remember there were a few that lived in the UK that were on it but it has been quite a few years since my son was on it.
http://www.crohnsforum.com/forumdisplay.php?f=32