Low Dose Naltrexone

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Sinusallplugged
Regular Member


Date Joined May 2005
Total Posts : 92
   Posted 6/9/2009 2:28 AM (GMT -7)   
For the past two years I have been on Remicade every 6 weeks. Hesitant at first, I had to agree to the toxic drug because I had no alternatives and was in excruciating pain and my life was a wreck. I had to decide between Remicade or surgery or the quality of my life would remain at the low level that it was. The Remicade worked well, and it was as if I didn't have Crohns. But the fear of higher risk for lymphoma and other complications still looms and scares me.

I decided to try LDN (Low Dose Naltrexone) about 2 months ago from another doctor (Not my GI) who I decided to go to on a recommendation from my father. It has been over 8 weeks now since my last infusion and I still feel great. I just thought I should report this in the forum because I know how many of you are suffering and this is a great alternative to at least try from the other toxic drugs out there.

Any questions? Other out there also taking this miracle drug?

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/9/2009 4:32 AM (GMT -7)   
there are a good amount of us who are either trying it out (like me, between weeks 3 and 4) and some long timers (couple of years). I'm happy you are on it. There are 2 posts/discussions here that I know of in the past 2 weeks about it, Im sure others will weigh in and say hi. My question for you would be, when did it seem to start working and how can you tell it's helping? My response has been interesting i can quantify a few things: I was in a low point of a flare when I started it, I had been swollen around my upper abd. for a year, within 10 days the swelling went down about 4 inches. Another week later another inch or so. My weight has stayed stable so I know it's not weight loss, it's actually decreased inflammation which can be seen, so that's cool. I'm recovering from the flare, but that's not specifically measureable. how about you?
strictures, crohn's, adhesions, endo. fighting Pyoderma Gangrenosum.
Trying LDN 4.5mg nightly ~ because I'm allergic to pentasa and 5ASA's I'm taking Boswellia Serrata. SCD yogurt. Olive leaf liquid extract for candida, using silver sulfadiazine (new to me) on Pyoderma . B-12 shots. Juicing veggies!


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 6/9/2009 1:49 PM (GMT -7)   
I have been using LDN for 2 years. The first day after I had the first LDN pill my pain was gone. I used to wake up early in the morning several hours before I intended to, to find I had pain in my tummy. When my cellphone alarm rang I found that I had not been awake with pain. The pain usually went away after 6-7 bathrooms visits, and usually returned after I had dinner to get worse the entire afternoon and untill I was going to sleep. No pain returned.

I too had a swollen upper abdomen, I looked pregnant, and the swelling gave me a press all over the abdominal area. Like I was filled up like a helium balloon :-).....but all this swelling was gone within a couple of days. I was severe anemic. Gradually got normal and am never anemic now. Had obstructions really often, haven't had more than two obstructions in two years, both self resolved, because they were not lasting as long as before. Have had two small flares during my 2 years on LDN, but they have been nothing compared to what it used to be. They were obstruction flares, not swelling, cramps and diarrhea. When I had those flares I used a combo of prednisone (only 10 mg) and LDN. This is the highest dosage that is possible to use with LDN, and also the only medicine that medical staff means is ok to use with LDN. This due to the prednisone is not suppressing the immune system when using from 10 mg and down. (Ref. Phd. dr. Skip at Skipspharmacy.com)

All in all, I don't need other medicines than LDN, I am working full time, and feel really great. Have some days where I feel more tired than usual, I think it's the disease that does this and not the LDN. I haven't had a cold in 2 years, my endorphins are high and stable. I used to get colds if someone sneezed on TV and I was watching. I was always getting long and intense colds.

Two weeks ago I decided to try to use 3 mg. 4 days ago I got my first cold in 2 years. Tonight I am going to increase the dose to where I used to stay, at 4.5 mgs. Hate that I can't breathe through my nose.

Hope my story can inspire more people to consider LDN. It's so worth a try. Just remember: No narcotic pain meds with LDN, the are working on the same receptors and are contraindicated. Not other Crohns meds than lower doses of prednisone.

miraclesivseen
Regular Member


Date Joined May 2007
Total Posts : 169
   Posted 6/9/2009 2:58 PM (GMT -7)   
I began LDN 3 weeks ago.....and I am so happy!
I havn't felt this good in 10 years
I have been hospitalized at least twice a year for the past 10 years.
Tried all the meds...........
Was on all the immune suppressant drugs including Humira.
I was on it 3 months and was dx was breast cancer so hey pulled me off of it, telling me 4 weeks ago...We don't know what to do for you as I stood there looking 10 months PG.
Prednisone was all they could say.....so after researching LDN on the web, I asked y GI for it.....he says WE HAVE NOTHING TO LOOSE.
4.5 mg of LDN at night has changed my life!
I cannot believe how terrible I was, I was always sick, couldn't keep anything in ...including water, as soon as it touched my intestines it was out...NO MORE!
I am having normal BM's I am sleeping like a baby, I wake up with energy.
God, Please let this continue.....Let me and others that are trying this drug & other drugs have great results and may we all have healing .

x0x0x
gretchen

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2831
   Posted 6/9/2009 3:42 PM (GMT -7)   
For those of you who were on heavy hitter IBD drugs and got on LDN.... isn't LDN contra-indicated when you are on immune-suppressing drugs? That is the only reason I haven't tried it- I have been on pred, Remi, and now pred plus Humira, for a while and can't get off them completely. Just curious if any of you got benefits from LDN before getting off the immune-suppressors.
Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
maybe surgery this year soon
 
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2831
   Posted 6/10/2009 9:06 AM (GMT -7)   
Anyone? Buehler?
Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
maybe surgery this year soon
 
 


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 6/10/2009 1:35 PM (GMT -7)   
LDN is a medicine used in small doses to enhance the immune system. Humira and Remicade are working just opposite. As far as I have learned those or other Crohns medications are not to be used at the same time as LDN. There are not any records yet to verify the theories on how LDN actually works, they have found out LDN is increasing the endorphins and betaenkephalins. This helps people with autimmune diseases as MS, Crohns, U.C, Lupus, Reumathoid Arthritis, psoriasis/arthritis and other. Even those with Asthma and allergies can have great benefits from using LDN. Go to youtube and search in their searchbox, type naltrexone and you'll find some very interesting storys about people on LDN. There are also videos where doctors are interviewed.
If you have questions about LDN, and want to know more there are a few things you can do:
Either go to the yahoo group and register to ask the LDN group that have most members. They are a supportive and nice group. As I have written before the group consists of patients from all autoimmune diseases. Or you can email/call Phd. Dr. Skip Lenz, he's a pharmacist and owner of www.skipspharmacy.com. His staff is answering questions about LDN. You can also learn more about LDN here: www.ldninfo.org
It's important that everyone considering LDN understand that the dose is maximum 4.5 mg, and it has to be taken at night. The endorphines is prodused in the early morning, and LDN blocks the endorphine production (influences the same receptor site) and the body is triggered to believe there is no more endorphines, and hence produces much more. The immune system will then work as it was ment to do before we got sick in the first place. These are still theories, the immune system will probably be one big exciting scientificial field the coming years. Read this page to learn more and to find more links about LDN.

http://jeffreydach.com/2009/04/13/low-dose-naltrexone-ldn-2-jeffrey-dach-md.aspx

 

Finally; don't start to eat your triggers when you start to feel well on LDN, you never know if it's too soon to experiment ;-)


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2831
   Posted 6/10/2009 2:43 PM (GMT -7)   
Thanks, BeeSting- that is what I understood too. So LDN is out for me, as my colon would basically explode into a bloody pulp if I stopped all the immune suppressors. Certainly a good thing to try though for anyone not on them, before resorting to them.
Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
maybe surgery this year soon
 
 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 6/10/2009 8:41 PM (GMT -7)   
LDN can be used by patients who are already on Entocort.

Sinusallplugged
Regular Member


Date Joined May 2005
Total Posts : 92
   Posted 6/11/2009 1:53 AM (GMT -7)   
I don't know. I started LDN about a week after one of my Remicade infusions. Didn't seem to interfere at all. I know the LDN is working now because usually I start getting flare ups 6 weeks after an infusion and it has been well over 8 weeks with no sign of any problems. Just tonight I had a nice solid stool with no stomach pain what so ever. Life is good...

BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 6/11/2009 12:12 PM (GMT -7)   
Probiotic, as long as you're on Humira and/or higher doses of prednisone, you have to avoid LDN. Keep a close watch on the trials going on at Penn State, when Phd. Dr. Jill Smith is concluding her phase 2 trial we will know more about if it's possible to mix those medications. The phase 2 trial will be concluded within a year from now. njmom, yes you're able to use Entocort and LDN, as long as the dose of Entocort is similar to 10 mg of prednisone. That is around 2.4 mg or maybe 3.0 mg of Entocort. I am sure some people are using higher doses than 10 mg of prednisone with LDN, but I am not sure which of the medications that is doing the good job at that point.
All the doctors active in spreading the word about LDN is careful when suggesting the use of immune suppressors / modulators with LDN due to the fact that there is no FDA approval telling us that it's safe to do this mixing.

LDN alone is safe, it's FDA approved in MUCH bigger doses as naltrexone and is approved to be used in big doses as up to 300 mg. (around 100 times stronger than what I am using right now). I use 3 mg, it's almost a homeopathic size on the pill. It has been used by humans for 30 years, and has side effects lesser than an aspirin. It's just an off label prescription, as humira has been for the Crohns patients. (Actually 50 % of the prescripted meds in the US are so called "off label") cool

Sinusallplugged
Regular Member


Date Joined May 2005
Total Posts : 92
   Posted 6/18/2009 12:46 AM (GMT -7)   
I wonder what my MD will say when I tell him I'm taking LDN now and I want off the Remicade. When I brought it up 6 months ago he wasn't enthusiastic at all...
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