Naltrexone - Doctors says continue other meds?

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CrohnnieMan
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Date Joined Aug 2008
Total Posts : 190
   Posted 11/6/2009 9:38 AM (GMT -7)   
I am currently taking 150mg of Imuran a day. 3 mg of Entrocort 3x a day. 1 Gram of Pentasa 4 x a day.

I told the nurse from what I read online you should not take Imuran or Entocort at the same time. She she that she asked the Doctor twice and was told to continue my current meds and take the Naltrexone at bed time. He gave me a 30 day dose to see how I do.

Can someone help make heads or tails of this? I don't want to take it if it interacts with the other meds or basically does nothing if I am on the others. Thanks everyone...

Post Edited (ChronnieMan) : 11/6/2009 9:46:35 AM (GMT-7)


Writer
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   Posted 11/6/2009 9:55 AM (GMT -7)   
I think your doctor is being appropriately cautious. So far there has only been a single pilot study of naltrexone in Crohn's disease, so we don't know yet whether the results achieved in that study occurred by chance or will be validated by other studies. That means it would be risky to discontinue other treatments because if naltrexone turns out to have no affect on Crohn's, you could find yourself in a severe flare.

CrohnnieMan
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Date Joined Aug 2008
Total Posts : 190
   Posted 11/6/2009 10:10 AM (GMT -7)   
I can appreciate him being cautious because the last thing I want is to be in a flare lol.

From what I have read is they can basically cancel each other out since LDN boosts the immune system while Imuran & entocort lower it. So I shouldn't worry taking it all at the same time?

FYI - He just increased my Imuran from 100 to 150 about a month ago. And added Entocort at the same time.

Writer
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Total Posts : 443
   Posted 11/6/2009 10:21 AM (GMT -7)   
I'm not sure enough about the mechanism of action to be able to say whether they will cancel each other out. It's one of those things I think we won't really know for sure until the current studies are completed. For now, all you can do is try and see. I can see it might be confusing to figure out which is working with the recent addition/increase of other meds.

CrohnnieMan
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Total Posts : 190
   Posted 11/6/2009 10:52 AM (GMT -7)   
Thanks Writer. The pharmacy that is compounding this says it should be ready Monday or Tuesday. Here's to hoping it helps!

BeeSting
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Total Posts : 392
   Posted 11/6/2009 1:45 PM (GMT -7)   
 
 
Naltrexone is in big doses, from 50 mg and up to 250 mg a mediciation used to block the mu receptors for those who are addicted to heroin or alcohol. Low dose naltrexone, LDN, is compounded from naltrexone, and is in a very small dose.
 
Make sure your doctor has written a rx on 3 mg or less, so that you can find a proper dose that suits you the best. Many starts with 3 mg and increases to 4.5 mg.
The results of the phase II trial will be in the pipeline during the next year, as far as I know, and untill then don't mix big doses of entocort or big doses of prednisone with LDN. Small maintanance doses from 10 mg and down with prednisone or from 3 mg and down with entocort is acceptable.
 
Don't either mix any pain medicines containing narcotics with LDN. These pain medicines (made of morphine) is going to the same receptor site as naltrexone, this means that the pain medicine won't work. If you have to use pain meds while on LDN (often the LDN increases the endorphins so much that you don't have to), just use other brands not containing morphine.
 
Other medicines that is suppressing the immune system is not to be taken while on LDN. The reason is that the trial still isn't closed, and we actually don't know if it's possible to mix those modulating or suppressing the immune system with LDN.
 
Still entocort and prednisone in small doses as written above is ok, because when those are at that low dose level, they don't suppress the immune system as they do when more than 10 mg. Asacol is one of the medicines that could be used with LDN
 
LDN is a no brainer, but you have to learn what kind of medicines that is allowed to use with LDN. If you go to a yahoo group, you could find a lot of good advice there. Just take your time and do a good research. And, yes, many doctors don't know LDN, it's an off label medicine. But ABSOLUTELY legal to use./bee

CrohnnieMan
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Date Joined Aug 2008
Total Posts : 190
   Posted 11/6/2009 3:01 PM (GMT -7)   
Ok that does concern me a little since Imuran is an immune suppressant and I am taking 9 mb of entocort a day. I know I have see that yahoo group before and am going to try to locate it again. Does anyone have a link to it?

CrohnnieMan
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Date Joined Aug 2008
Total Posts : 190
   Posted 11/6/2009 3:17 PM (GMT -7)   
Of course I just found this on lowdowsnaltrexone.org-


Can LDN be taken along with any of the standard medications for multiple sclerosis?
It can, and many people with MS do this. However, all of the standard MS drugs, with the probable exception of Copaxone, are immunosuppressant and thus tend to oppose the beneficial immune system upregulation induced by LDN. Therefore, many people with MS try to wean themselves away from these other medications when they find that they are doing well on LDN.


Its for MS, but speaks of immunosuppresant drugs. According to that, I should be able to take the Imuran and wean off if I am doing better with LDN.

Dave D
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Date Joined Aug 2005
Total Posts : 404
   Posted 11/7/2009 4:43 PM (GMT -7)   
I think your Doc's advice is right on. He is taking the position like mine did in thinking it surely can not hurt you. I think my disaster with LDN was more about coming off the Imuran than the LDN itself. All my sucessive Docs seem to saY that strange things sometimes happen when you come off Imuran.

I guess the second trial never came off. Is that true?
Dave D
Grandpa Dave is 70.
IBD since 1977
Perforation and resection 1993
Diagnosed as Ulcerative Colitis 1994
Received J-Pouch 1997
Diagnosed as Chron's 2004
Redo, resection, and remove camera capsule 2005
Unsucessfully tried LDN 2007
Contracted Scleritis of the Eye 2008
Four Grandkids
Older than dirt


CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 11/7/2009 8:45 PM (GMT -7)   
I think the second trial ends July of 2010.

I should start my LDN Monday or Tuesday. I will continue my current meds and hope for the best!

BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 11/8/2009 11:36 AM (GMT -7)   
ChronnieMan, you're right, the second trial, the phase II close in 2010.
To get support you could contact Dr. Skips staff, go to www.skipspharmacy.com to find their email. There is also another pharmacist you could call or write:
http://www.youtube.com/watch?v=51YirTASydo
the pharmacist has made a video about LDN at Youtube. The LDN group at yahoo is: http://groups.yahoo.com/group/LDNandIBD

and finally, if you go to youtube.com and put the words ldn naltrexone in the searchbox you will find a lot of people talking about their experience on LDN, you also find a LOT of doctors talking about LDN. And
you'll find a doctor from UK, his known as a Dr. Oz (USA), he's a famous TV doctor, and he's a great LDN supporter.

At another link here at hw someone mentioned what kind of our kind of med's that is compatible with LDN ...can't remember who wrote it, she had found it at the Penn States page, where the phase II on LDN and Crohns is going..../Bee

njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 11/8/2009 12:19 PM (GMT -7)   
The second clinical trial had an estimated end datre of Oct 2009.
 

CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 11/8/2009 6:25 PM (GMT -7)   
Beesting,

Thanks so much for that youtube video! I am taking in a print out from the LDN website with the recommendations on fillers and not to use the slow-release form when I pick up my prescription. I will ask if they can provide the fillers and if they used the SR. If they used SR, then I will refuse the prescription.

CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 11/9/2009 3:14 PM (GMT -7)   
Just picked my first prescription today and was told they did not use the slow-release formula. They also used Avicel as the filler which is a recommended one according to the LDN website. I will begin my first dose tonight.

Everyone wish me luck!

BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 11/9/2009 4:12 PM (GMT -7)   
Crohnnieman, this is great, I hope that you'll go to the best group at yahoo to get support, you'll find 150 more people trying LDN, some of them are doing great, some other are not so great. The reason could be as simple as yeast, or what kind of food to avoid. Wheat is often one of the bad guys. . . ask them folks there, many of them have know exactly where you are... Anyway, just wanted to wish you the best of luck! :-) /Bee

Post Edited (BeeSting) : 11/10/2009 4:06:40 AM (GMT-7)


CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 11/9/2009 6:18 PM (GMT -7)   
Thanks Bee. I've already made a post and seems my assumptions about the meds are right. I decided yesterday to reduce my Entocort to 6mg /day and back to 100 mg of Imuran a day. My plan is to be at 3 mg of Entorcort by the end of the week and stay on the 100 mg of Imuran. I will ride out and see how everything goes.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 11/9/2009 9:59 PM (GMT -7)   
FYI, at the end of my daughter's first week on LDN she experienced gas, abdominal rumblings, an occasional subnormal temp, reduced appetite, interrupted sleep, and fatigue (for the first time ever, would take naps in the evening).
 
All these symptoms settled down by the second week. 
 
  

CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 11/11/2009 4:45 PM (GMT -7)   
After taking it for the second night I got extremely tired after I got to work this morning. Not the usual I am tired, but so tired I couldn't walk straight for a bit. Hopefully this will pass over the next couple of days.
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