Low dose naltrexone

[suzielouwhoo]

low dose naltrexone

hello everyone,

i am a new user of the site and am looking for some advice when it comes to low dose naltrexone. i have suffered with crohn's now for over 20 years and at the advice of my gp have decided to give ldn a try. he prescribed 5mg a day and i suffered form headaches right from the get go but i hoped that they would pass. then the headaches got worse and i felt nauseous all the time. i have been having some pain again even though i have been almost free of that since getting a temporary colostomy three and a half years ago. i don't think he is as familiar with some of the side effects of this drug and when i went to see him the other day he gave me a prescription for 3mg. the last two days or so have been a bit better but i have been getting sick to my stomach quite a lot. (my crohn's is not very typical as i have started with gastro/duodenal crohn's when i was a teenager)
does anyone out there have any experience similar to this? did your side effects go away eventually? thanks for your time.
susan

 

[My Butt Hurts]

Hey SLW - LOVE your user name!
I can't help with your questions, as I have not used ldn. If you do a search on here, you will find several threads about it. I believe KatieSue, Kev, and D Bergy have used ldn along with several others.
Welcome to the forum, glad you found us!
MBH

edit -
These threads have the word 'naltrexone' SOMEwhere within them.
http://www.crohnsforum.com/search.php?searchid=314467

And these threads are all tagged with 'naltrexone'.
(Possibly more relevant than the above ones.)
http://www.crohnsforum.com/tags/index.php/low-dose-naltrexone/
http://www.crohnsforum.com/tags/index.php/naltrexone/

 

[ameslouise]

Hi Susan -

Yes, there is a lot of info in the Treatments section of this forum. From what I have read, 5 mg seems like a high dose - I think you are supposed to work up to the max dose of 4.5 or something like that. You will find all that info on those threads in the treatment section.

Good luck and welcome to the Forum!

- Amy

 

[Crohns08]

Hi Susan,

I had used LDN for awhile. From my understanding they're supposed to give you a week of 3 mg to get you used to it and then work you up to 4.5 mg. The only side effects I ever encountered were sleep disturbances. Maybe if you worked up to it, it would help?

 

[RobK]

Hi Suzilouwhoo,

I've been on LDN for almost a year. The recommended dose is 4.5mg and you want to make sure who ever is compounding it is doing so correctly. Make sure it has the appropriate fillers and is not a time released version.

Besides the websites www.lowdosenaltrexone.org and www.ldnscience.org I got a lot of info from www.skipspharmacy.com (you can even email Skip...he usually responds within a day or so)

My best advise is patience...it starts to work very slowly. Had a few set backs at first but then I noticed suttle improvements after each week. Had some side effects at first but that went away to now I have none.

Best part is I have not had anything even close to a flare up and it is the only medication I take.

I would recommend in conjunction eating a low carb diet. I currently follow Specific Carb Diet.

Good Luck!
RobK

 

[Guest]

hi Suzi.. yeah i would echo what people have already mentioned here.. i think the 5mg dose was too high to start you off with, and according to the clinical trials, higher than it need be for Crohn's treatement..

i was on it last year and i'm about to start again. i chose to start off very low and work my way up to 4.5mg over the course of many weeks. i had hardly any side effects.


in addition to the links above, there is also the LDN Research Trust.

 

[Astra]

Hi Susan
and welcome

I don't know anything about LDN but there are lots on here who do.
I was just wondering, when you said GP, do you mean a general practitioner or a gastroenterologist? In my experience, GPs are not very familiar with some drugs and their side effects, just my opinion, not generalising.
good luck
xxx

 

[phillycrohns]

Hi Suzi:

I am currently taking Naltrexone and am taking 4.5 mgs. From all the research I have done, 5mgs is definitely too high a dose. Here is a great site that talks about dosing and side effects. It also has a calculation (based on your weight) to figure out your optimal dose:

Here is an exerpt: "Although the optimal dosage of LDN for the average adult (presumed to weigh 150 pounds) is considered to be 4.5 mg, some patients do better (i.e., have fewer side effects and a better over all response) on a lower dose, particularly if they weigh significantly less than 150 lbs. To compute one's theoretical "ideal" dose in mg based on Clark's pharmaceutical dosage rule, multiply your weight in pounds by a factor of .03 (the same formula also works in computing the dosage for children and pets). If liver functionality has been compromised, however, a dose lower than the computed dose may be necessary, and it can only be determined by trial and error."

The site is: http://www.webspawner.com/users/sideeffectsofldn/index.html

Not sure what your weight it, but if it is low and your liver functionality is compromised, then you may be on too high a dose and that would explain your side effects.

Good luck and let me know if you have any questions.

Chris

 

[Kev]

Hi Suzie.. Welcome to the Forum.. I've been on LDN for over two years now and am doing great. I agree with everything everyone else has said, and you need to be sure that the pharmacy is compounding it correctly, not using lactose (in case your'e sensitive to it like I am), not using time release Naltrexone as the base, and that you watch the shelf life (don't use anything older than 3 months). Here's the other catches... don't use it while taking any immuno suppressors, and try to take it only/always just before bedtime. (the only side effect of the drug I had.... I take 4.5mg.... was sleep disruption due to vivid dreams... sadly, those have faded). The other catch is that LDN will seem to take forever to work... AND you might get worse before it starts to kick in... that is the biggest risk. I've heard of people starting off as low as 1.5 or 3.0 mg, but the trial was based on 4.5 mg, and I think the lower doses are more likely some doctor playing cover their ass. Thing of it is IF you go with the lower dose, AND it doesn't work (at that dosage) WHAT do you do next. If these side effects (if they are side effects, and not signs of your disease flaring.. which is to be expected if you go the LDN route... oops. crossed topics again... OK, if they are side effects, AND you simply can't bear them for 8 - 12 weeks, then try the lower dose.. but give it longer to work. I'd be suspicious that what you are experiencing is possibly a combo of too high a dose (5.0 vs 4.5 mg), perhaps compounded with lactose instead of another binder agent... and some flaring as your body adjusts to being off of all the regular crohns drugs. LDN will let your body fight crohns on its own if you let it. OK, that's my two scents worth. Get a lower dose of LDN, ensure it is compounded correctly, and give it a try. If it works for you it will change your life.

 

[suzielouwhoo]

thanks everyone for your responses!!!
i am feeling almost 100 times better than when i posted. i am eating again and am not nauseous all the time. YAY! i just went to see a new gastroenterologist and was pleasantly surprised with the amt of time he took with me and that he seemed more than willing to give the ldn a try. my last specialist rushed me out of his office in a minute flat at every visit no matter what. so this is a nice change.
it was my general practioner who suggested the ldn. he is a regular md but is very open to more natural treatments and is a yoga teacher like me. will let you all know how it goes but i am very excited with the new treatment. perhaps my tempoary colostomy can be reversed sooner rather than later.
have a great day everybody! namaste

 

[Nancy Lee]

Hi Suzie!

Just a quick hello for now
and a belated welcome to the site!!

Hugs~Nancy