Getting worse on LDN

[nogutsnoglory]

I was doing pretty well for a while on remicade and now I'm having diarrhea again and urgency on LDN. It's only been a month and it's half the standard LDN dose but I'm afraid if this keeps up I'll need to stop.

I know some say you get worse before you get better. How long? I cant keep going like this.

 

[Nym]

This sounds awful. I'm not sure I would have hung on as long as you have. I wanted to try LDN many yrs ago but gp refused.

I'm sure you have read this ...


Because LDN blocks opioid receptors throughout the body for three or four hours, people using medicine that is an opioid agonist, i.e. narcotic medication — such as Ultram (tramadol), morphine, Percocet, Duragesic patch or codeine-containing medication — should not take LDN until such medicine is completely out of one's system. Patients who have become dependant on daily use of narcotic-containing pain medication may require 10 days to 2 weeks of slowly weaning off of such drugs entirely (while first substituting full doses of non-narcotic pain medications) before being able to begin LDN safely.

Those patients who are taking thyroid hormone replacement for a diagnosis of Hashimoto’s thyroiditis with hypothyroidism ought to begin LDN at the lowest range (1.5mg for an adult). Be aware that LDN may lead to a prompt decrease in the autoimmune disorder, which then may require a rapid reduction in the dose of thyroid hormone replacement in order to avoid symptoms of hyperthyroidism.

Full-dose naltrexone (50mg) carries a cautionary warning against its use in those with liver disease. This warning was placed because of adverse liver effects that were found in experiments involving 300mg daily. The 50mg dose does not apparently produce impairment of liver function nor, of course, do the much smaller 3mg and 4.5mg doses.

People who have received organ transplants and who therefore are taking immunosuppressive medication on a permanent basis are cautioned against the use of LDN because it may act to counter the effect of those medications.

http://www.lowdosenaltrexone.org/#Are_there_any_side_effects

Great post here: http://ldn.proboards.com/thread/1935

 

[JDTM]

Hard to say. Some have reported a quick and noticeable difference, but for me, the change was very gradual, and in conjunction with other medication (in my case, Pentasa, which is also pretty low-grade). It's hard for me to make an educated guess also because I don't know how the difference in dose amount affects (or does not affect) the results. I've always been on 4.5mg, and I never "worked my way up" -- some people have done this approach, however. Because LDN isn't standard practice yet, the jury is still out on what the "best practices" are in terms of dosage, as well as how long it should take to reach efficacy. I've heard 3 months, but again, that's anecdotal. Are you still on the Remicade, or was LDN intended as a replacement?

Sorry I can't give you more concrete answers at the moment.

 

[nogutsnoglory]

Thanks, I'm still on Remicade but it seems like LDN may be countering the positive effects I've had on remicade.

 

[JDTM]

Educated guess based on other correspondence on the LDN forum, but I don't think the LDN should really counteract or interfere with anything that the Remi is doing. It seems like LDN and biologics can co-exist peacefully. Not saying you're wrong, of course -- everyone's individual mileage may vary. That said, the thing that makes IBD such a challenge (as I'm sure you know) are all the myriad factors that may or may not be contributing. As an example, I'd like to think that I'm doing well because of the LDN... but it could very well be something else and I'm just blissfully unaware of it.

Keep us posted on how you progress though buddy. Pulling for you!

 

[nogutsnoglory]

Thanks, you are absolutely right it's so individual and there are so many factors. Whatever the reason glad you're doing well.

 

[SupportiveMom]

When my D started with a new med we gave it 6 months if there was no allergic reaction. It was frustrating at about month 4 because you just know you are wasting the next 2 months on such low odds. That said no drug made her feel worse so it was easier to stick with it. If LDN is what is making you worse than you need to remove it. But once a med is tried and stopped it is considered a failed drug and most docs won't try it again. So make sure it is the LDN and not something else like iron or other simpler issues. There isnt an endless supply of IBD meds and you certainly don't want to be where my D is, out of alternatives.

 

[LabRat9]

I would ask your doctor about checking your antibodies for Remicade before making a conclusion that it is the LDN. Remicade worked wonders for me (minus a few side effects) for almost 2 full years. I was scoped yesterday and am back at square one with inflammation, bleeding, and narrowing. I started losing weight and going to the bathroom about 8 times a day starting 2 months ago. I found out I had built antibodies to the Remicade as most people eventually do and am soon to start Humira and possibly LDN. Remicade works differently in everyone and people build antibodies at different rates as well. This can be checked and should be before you count out LDN. I am not saying the LDN is working but I can say from experience that when you build antibodies to remicade it tapers off very quick.