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LDN (low dose naltrexone) - it works!

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InSoFla
Veteran Member
Joined : Jan 2011
Posts : 4691
Posted 2/10/2012 7:45 PM (GMT -6)

Transdermal LDN (low dose naltrexone) put me in remission - Bottom line is it works!

For those of you considering LDN, or for those of you not familiar with LDN, I wanted to share my story:

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

Here's my story on LDN: I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10 (on scale of 1-10, 10 being the worst).

When I spoke with the compounding pharmacist, she mentioned that I may not be absorbing the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me a lot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too.

 

The THIRD day after I started the transdermal LDN, my bleeding went from a 10 to a 3. FOUR days after that ( full week on LDN), my bleeding STOPPED completely, after more than 1 1/2 years of continuous bleeding. Bottom line is it works!

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL. They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you. You can reach them at: 800-553-7429 www.skipspharmacy.com

Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org

www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org


and if you want to find what other patients have experienced when used LDN, choose UC, Or breast cancer, or Crohns Disease at:
www.ldndatabase.com

Hope this helps. And I hope to those of you on the fence about trying LDN, give yourselves a chance...

Please let me know how it works out for you.

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sherbear46
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Posts : 3316
Posted 2/10/2012 8:03 PM (GMT -6)
Thanks InSoFla for the information that I'm sure many on the forum will find usefull. I myself think that if at some point the meds I am on now fail me that I want to try LDN. In fact I may ask my GI about it at my appt later this month just to see what she has to say since you said most don't think its the standard of care. Who knows she may surprise me. ;)
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Max89
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Joined : Aug 2009
Posts : 152
Posted 2/10/2012 10:46 PM (GMT -6)
Hah, my GI would probably choke me to death if I mentioned LDN to him. He's one of those "LONG LIVE PREDNISONE and get out of my office asap" doctors.
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deltaforce
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Joined : Jun 2010
Posts : 2373
Posted 2/11/2012 7:19 AM (GMT -6)
Thanks for the post.

Just a request, keep the font size to default. It really puts stress on the eyes. (Instead the signature could be smaller :))
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@LoLil
Regular Member
Joined : Jul 2011
Posts : 117
Posted 2/11/2012 8:16 AM (GMT -6)
When you say the LDN put you in remission, how much did it reduce your BMs? I'm still trying to figure out how to know what remission is. Do you continue with your other prescribed medicines? And will you still follow diets or start introducing stuff you avoided before?
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ItsAlwaysSomething
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Joined : Oct 2011
Posts : 1419
Posted 2/11/2012 8:43 AM (GMT -6)
Thanks again for the post, InSoFla

With regard to the font...those of us with more "mature" eyes appreciate the larger font and encourage you to continue using it. (no eyestrain here :-))

I, too, have been thinking about the definition of remission.
I guess it would be going back to the same number of BMs that I had prior to the start of the UC symptoms.
It's like trying to determine what's "normal".
I always had more than 1 BM daily depending on what I ate.
Since everyone is different, I don't think a standard number can be established.

I don't know about continuing to take meds if remission is achieved.
I believe I will, at the very least, use probiotics to maintain a healthy gut and LDN to try to prevent the development of cancer cells.
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Christine1946
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Joined : Aug 2008
Posts : 5987
Posted 2/11/2012 1:47 PM (GMT -6)
     That's wonderful news!!!!  Hope you continue to feel well.  My GI doctor never mentioned LDN to me.  Guess he wouldn't be making any money off it.  I have come to realize, unfortunately kinda late, that if it didn't put a buck in his pocket, he wasn't interested in suggesting it to me mad .  He completely poo pooed fecal transplantation and any type of probiotic.  I did take a probiotic (Powerdolphilus) but it didn't help.

     Well, now he isn't making any money off me because I have no colon.  He was NOT a happy camper when I told him I was having the operation...too bad for him.  My hubby had a colonoscopy yesterday (his colon is beautiful tongue ) but he went to a different GI doctor than the one I used to go to.

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GidHike
Regular Member
Joined : Jun 2011
Posts : 128
Posted 2/11/2012 5:23 PM (GMT -6)
Can this be safely taken for the rest of your life instead or in addition to regular UC meds or is this the kind of 'extreme' drug like prednisone and Humira?
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ItsAlwaysSomething
Veteran Member
Joined : Oct 2011
Posts : 1419
Posted 2/11/2012 5:42 PM (GMT -6)
GidHike
If you are really interested in information regarding LDN, you should look at some of the websites in InSoFla's post (beginning of thread).

There is no comparison between LDN that has been found to have minimal side effects and a drug like prednisone that has potentially terrible side effects.
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notsosicklygirl
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Joined : Dec 2008
Posts : 17854
Posted 2/11/2012 6:14 PM (GMT -6)
I am definitely going to try LDN next time I experience symptoms of UC. I just have to find a way to get in to see a doctor who will prescribe it and wont charge me an arm and a leg for the consultation.

Thanks for keeping people aware of LDN as an option InSoFl.
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InSoFla
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Joined : Jan 2011
Posts : 4691
Posted 2/11/2012 8:39 PM (GMT -6)
Sheri, yes, I hope you'll keep LDN in your back pocket, if you ever need it (hopefully you won't). :-)

Max89 - the bottom line is you have to do what's right for you, and if you feel LDN is right, then too bad for your doctor (sorry to be so blunt).

deltaforce - sorry about the font size, when I have alot of info to post, I try to use 8 point font so it won't take so much space, didn't realize it would be a problem, next time will post in larger font. Now, as to my signature, I have no idea how to make that smaller font?

@LoLil - Welcome to the forum!
When you say the LDN put you in remission, how much did it reduce your BMs? I'm still trying to figure out how to know what remission is. Do you continue with your other prescribed medicines? And will you still follow diets or start introducing stuff you avoided before?

Before going on SCD diet and doing my supplements, etc... besides the major bleeding, I used to have probably 10-15 BMs a day, lots of urgency, cramping, D, pain - heck, some days I couldn't even leave the house. After I went on SCD and slippery elm powder, etc... my BMs went down to probably around 4-5 a day BUT still bleeding, lots of it. After I started the LDN, as I mentioned the bleeding stopped entirely, and no more cramping, urgency, no pain, no D, and I now probably go about 1-2 times daily. I'm still on a strict diet (modified Paleo - no dairy, no wheat, no gluten, no HFCS, lots of grass-fed animal products, salads and veggies, some fruits and nuts), still on all my supplements, probiotics, and LDN, but am NOT on any prescribed meds ( although 5asa did not agree with me, I used to tolerate the canasa suppositories, although it didn't do much). As far as diet, I've found out it's key to keeping the inflammation down. Do I cheat? Yes, occasionally, if I do I make sure to take my slippery elm powder + probiotics, both before and after the "cheat". But long term, I KNOW I have to stay on this diet.



 

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InSoFla
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Posts : 4691
Posted 2/11/2012 8:52 PM (GMT -6)
ItsAlwaysSomething,

You're right, remission looks a little different for each of us.

I don't know about continuing to take meds if remission is achieved.
I believe I will, at the very least, use probiotics to maintain a healthy gut and LDN to try to prevent the development of cancer cells.

Besides the Paleo diet, my intent is to stay on the supplements, especially the slippery elm powder + probiotics, and definitely LDN, so I agree with you there. I read somewhere (can't find it, sorry :() that everyone should be on LDN, because all it can do is help with your immune system.

Christine1946,

I am so sorry your crappy doctor was just interested in $$$, unfortunately greed is pretty rampant. But actually, it's not just greed, it's the mistaken notion that they (doctors) know everything better than we do. It's too bad you never had a chance to be given alternatives.

GidHike,

Although some people stop LDN once they achieve remission, I have no intention of stopping. This is nothing like the extreme biologics, 6mp, humira, remicade, or even prednisone - which have tons of  side effects and dangerous ones too. LDN has almost no  side effects at all. It's been around since the 1980's helping many with cancer, UC, Crohns, MS, Parkingsons, and a multitude of other diseases as well.

notsosicklygirl, Glad you're keeping LDN in your back pocket.

ByeByeUC, Yes, I believe it has been used for RA. I know it's been used successfully for MS, Parkingsons, and other autoimmune diseases. You can check out the data at the www.ldndatabase.com website.

2011MLBchampions - I totally agree with you.


 


 


 




 

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Lodi
Veteran Member
Joined : May 2012
Posts : 686
Posted 5/3/2012 4:38 PM (GMT -6)
Hey all you informative people!

I'm so glad I found this forum, there is a ton of info here! I'm researching LDN for myself and really interested in trying it. That and FT.

I'm really confused about all things UC as I've just been diagnosed late Feb. (I had bloody diarrhea every day for 9 months prior). My GI put me on Mesalamine and my symptoms improved soon after. It's possible the flare may have been subsiding on it's own said the Dr. (I thought that was very humble)

I'm taking Mutaflor, attempting to do the GAPS diet but I'm not having a good time with intro. Now I've developed really bad heartburn with my bone broths. Not too sure what to about that though I suspect my gut flora has something to do with this. I had another short lived flare when I started my period.

Anyways, back to LDN, I found a local compounding pharmacist who has made it and I know my GI has prescribed it to someone who was about have their colon removed but it didn't sound to me like he knew anything about it (I luckily overheard him discussing this with the pharmacist). I'm hoping when I ask about it for me, he will be open to it. Do I want to 'work' on getting better gut flora before I try LDN? At the same time? If there are other threads about LDN how do I find them please.

I'm not finding a lot of info on LDN and UC though I see a lot with Crohn's. I've looked through much the provided websites at the top of the thread.

I hope THIS question isn't silly and that someone will answer it for me. How do 'they' know if the disease is Crohns or UC? My colonoscopy showed disease all through my colon but the angry red only part way. I also had biopsies, but if they didn't look at the rest of my GI tract, how do they know it's UC?
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IamCurious
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Posts : 3655
Posted 5/3/2012 5:03 PM (GMT -6)
I hope THIS question isn't silly and that someone will answer it for me. How do 'they' know if the disease is Crohns or UC? My colonoscopy showed disease all through my colon but the angry red only part way. I also had biopsies, but if they didn't look at the rest of my GI tract, how do they know it's UC?

My GI wasn't sure if I had CD or UC but IMO I don't think he cared. Biopsies indicated UC but I developed an abscess which is more often Crohn's. When I asked him he said not to worry, "the treatment is the same for both". But at the time it DID matter to me especially if there is a possibility of surgery, fistulas, or abscesses in the future.

I dropped him as my GI and I now consult with a doctor who does little more than write my prescriptions for VSL#3DS and regular blood work. I am now on my own and that is exactly where I want to be.
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InSoFla
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Joined : Jan 2011
Posts : 4691
Posted 5/3/2012 6:33 PM (GMT -6)
Lodi,

Welcome to the forum.

I'm so glad you've found us.

I'm hoping when I ask about it for me, he will be open to it. Do I want to 'work' on getting better gut flora before I try LDN? At the same time? If there are other threads about LDN how do I find them please.

Yes, I hope he'll prescribe it for you as well. You may want to show him the Dr. Jill Smith studies from Penn State, and don't be shy - be insistent if you have to.

I don't think having better gut flora is a requirement for LDN, however it certainly wouldn't hurt, regardless of whether you get on LDN or not.

There are other things you could do as well: diet modification, certain supplements which will help with colonic repair. For more info on these things and the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

As far as LDN threads, you can do a search under my name, InSoFla - and you'll probably find quite a few with informational links as well.

Let me know how else I can be of help to you.



 

 

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imagardener2
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Joined : Jan 2010
Posts : 5896
Posted 5/3/2012 6:44 PM (GMT -6)
I hope THIS question isn't silly and that someone will answer it for me. How do 'they' know if the disease is Crohns or UC? My colonoscopy showed disease all through my colon but the angry red only part way. I also had biopsies, but if they didn't look at the rest of my GI tract, how do they know it's UC?

Biopsy is the way your doctor determined that you had UC not Crohn's. If the biopsy wasn't definitive then more exploration would need to be done, some people's type of IBD is more difficult to determine. I know that Crohn's goes deeper into the tissue than UC does.

I'm not clear about BabeinTWoods doctor saying that UC and Crohns are treated the same. I know some of the meds are the same but I thought treatment was different but I'm not a CD expert my any means.

If you have more questions why not make a new post on the subject you want to explore?
BTW welcome to the forum.
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trojen
Regular Member
Joined : Oct 2011
Posts : 288
Posted 5/4/2012 7:24 AM (GMT -6)
If LDN revs up the immune system, does this then contradict immunesuppresant thearapy? I remember reading somewhere that "autoimmune" could mean an overactive or underactive immune system that is stuck out of sync.
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IamCurious
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Joined : Jan 2010
Posts : 3655
Posted 5/4/2012 7:37 AM (GMT -6)
LDN is supposedly an immune system modulator much like vitamin D. So it modulates, that is enhances or tones down the immune system as needed, whatever is necessary to get the job done.

Ask your doctor but I believe LDN, like vitamin D, can usually be taken with other meds without contraindications.

Post Edited (BabeintheWoods) : 5/4/2012 8:14:39 AM (GMT-6)

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i_love_coffee
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Posts : 637
Posted 5/4/2012 7:57 AM (GMT -6)

thanks for posting this insofla:

I really want to try LDN. 

I have a list of prescribing doctors from crystal, but none are near me.  I called Skips and they said there is a dr in phila. (not far) and someone that does phone consults in NY (i'm in south jersey)

I have my gi appt June 1, I guess i will ask her first  ask my regular gi dr then maybe try to get the rx from somewhere else.

should i bring in anything to my gi dr, any studies? the one from Penn state?

Has anyone done a phone consult? what is the cost?

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seasons21
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Posts : 633
Posted 5/4/2012 8:32 AM (GMT -6)
i love coffee

I almost did the consult but was lucky enough to find 2 docs in the meantime that were willing to prescribe. I would google a DO not an MD to see if they have ever used it before. I found one that did, went in for an appt and he gave me the Rx. A DO is more open to things like that. You can also look for integrative docs in your area. The mainstream ones are not comfortable so try those routes. I had to drive 2 hours the first time to the DO. Then I happened to find an integrative MD that uses it for kids with Autism and she was completely fine giving it to me. She is now my primary doctor. The consult would work, it's just expensive.
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i_love_coffee
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Posted 5/4/2012 9:07 AM (GMT -6)

seasons21, thanks for your reply.  Money is an issue so i will try to find someone within my insurance network.  My primary dr is an integrated dr, they do biopuncture (?) i think its called and prescribe homeopathic medicine.  Since I am never sick except uc, i think ive been to them one time in like 3 years.

but maybe going to them for the rx is worth a shot.

so what did you do, call around and ask first, "will you prescribe ldn? " or did you just go in and ask?  Did you bring any studies? Did they know how to write the rx?  and most importantly did it help your uc?

thanks@!

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seasons21
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Posted 5/4/2012 9:23 AM (GMT -6)
I googled DOs (doctor osteopathy) and called a few. I asked them if they have ever worked with LDN and gave them my diagnosis and story. I asked weather or not they'd be open to me coming in for an appointment but wanted to know pretty much ahead of time if they were willing to give it to me before I went in. I found a DO that specialized in pain management who was open and I saw him.

If you have an integrative MD that can write an Rx they may be willing to do it. My homeopath/naturopath do not write Rxs so they wanted me to try it but couldn't give me the Rx.

I would bring the studies but try and find someone who will talk to you for 5 minutes over the phone so you can get a feel if they are open. You don't want to waste your time or money. I also had to drive 2 hours the first time.

As far as helping me with the UC..not really that I can tell. However when I first got it I was on Prednisone (1st round this year) and I waited. I heard it doesn't help at high doses of Pred and I was nervous about it too. So when I tapered off the Pred and was sx free for maybe a month I decided to take it because I started to have some minor sx again. I took it for like 2 months and didn't see any difference. Ended up on Prednisone again and tapering now. Wondering if this time when I get lower on the Pred will it work better?? I've also played with dose and type a bit. My integrative doc wants me to stay on it but is also saying that it would be ok to go on 6mp to get my inflammation under control. She says the LDN work differently than the 6mp. She'd like me to get off the 6mp in a matter of maybe 3 years. I forget have you done 6mp or Imuran? I'm such a chicken I'm carrying around the bottle today and haven't started it yet. I just want the LDN to work!!

Some like InSoFla have had great success. You can call Skip at Skip's pharmacy with any questions, he is willing to talk. However he is not a doctor and you have to keep that in mind.

I think it's worth a try! Best to you.
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i_love_coffee
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Posts : 637
Posted 5/4/2012 10:38 AM (GMT -6)

thanks seasons this is great information.

I have never done imuran or 6mp. so far I have just used pred, lialda, entocort, rowasa, hydrocort enemas and now proctofoam.

My gi was considering imuran for me based on my symptoms (4 year pancolitis flare that is slowwwwwwwly improving) but after my colonoscopy in feb where there was just a 4 inch isolated patch of moderate inflammation in my rectosigmoid, she wasnted to try and treat it rectally.  i had already been on rowasa so she switched it up to hydrocort enemas, no luck, then i got involved in a study for budesonide foam and got booted out (long story, i posted it a few weeks ago). now i am trying proctafoam and getting worse.

if i were you i would take the imuran, i think its seems to help those that use it.... 

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Lodi
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Joined : May 2012
Posts : 686
Posted 5/4/2012 2:08 PM (GMT -6)
Thanks for the quick replies and the welcome.

Insofla, I really got a lot out of the link you put for me. I'm going to really have to do some exploring here. Nothing like getting your information from the folks in the trenches! The GI app was terrific!

As far as my biopsy, I didn't get any impression from the doctor that there was any question for the UC diagnosis, I just wondered how they know without actually checking your whole GI tract.

It feels like I have a ton of questions so I'll try to post new topics for those in time, all this exploring, digging and reading is time consuming...I can't let this be my excuse for not putting myself to bed at a reasonable time.
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InSoFla
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Joined : Jan 2011
Posts : 4691
Posted 5/4/2012 4:04 PM (GMT -6)
i_love_coffee,

I would suggest you show your doc the Dr. Jill Smith studies from Penn State and tell him you really want to try LDN.

If you don't get anywhere with your regular GI or PCP, then you'll have to find someone who will prescribe it for you - and Skip's can help with that.

Let me know how else I can help you.

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