A couple of LDN questions.... and observations.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/2/2009 5:32 PM (GMT -7)   
Hey, I'm hoping for a little feedback on LDN, I started 2 weeks ago. Had an immediate huge increase in energy and additionally I had a lot of swelling in my tummy from some large bowel loops that are stuck together, and the swelling has gone down about 75% -- which I thought was impossible, but I'm happy and certianly accepting it's LDN, because it's a huge change also.

I've managed the sleep thing okay, after about 10 days it's settled out, and so that's the cool parts, along with a lot of pain relief.

so here's my question: I'm a C type crohn's. I think this is making me more constipated - or something because besides the C aspect, I've also had a continuation (not a causing by ldn) of stricture issues so I've really had to step back on the food. Did anyone else have any C side effects? If you did did they go away?

Also, I'd love to keep this thread for any other wisdom about ldn from the crowd, because I've looked elsewhere on the internet and there does not seem to be a real home for chronies using ldn, and I'd sure appreciate some crowd wisdom as I move thru this.

thanks~!
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
just started on LDN cream (working!) ~ allergic to pentasa and 5ASA's. I'm taking Boswellia Serrata (works!) Just came off Xifaxan. Making 24 hour yogurt (FUN!) Using Olive leaf liquid extract for candida, using silver sulfadiazine (new to me) on PG.


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/2/2009 5:36 PM (GMT -7)   
oh -- to clarify - and contrary to my sig, I'm taking LDN caps, not the cream, that cream didn't work out well for me.
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
just started on LDN cream (working!) ~ allergic to pentasa and 5ASA's. I'm taking Boswellia Serrata (works!) Just came off Xifaxan. Making 24 hour yogurt (FUN!) Using Olive leaf liquid extract for candida, using silver sulfadiazine (new to me) on PG.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 6/2/2009 5:56 PM (GMT -7)   
janicea, have you joined the yahoo group for LDN users? There are crohnies there...

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/2/2009 6:03 PM (GMT -7)   
I've looked at it... it's a little too much for me to wade thru, but if no one weighs in here, I'll try there.
I just read something on the ldn site that says that excessive endorphon release can cause constipation at least in the MS'ers for a few weeks... I'm keeping my fingers crossed and I'm expecting it to stay bad for awhile instead of improve, hopfully it'll clear up. thanks Emom!
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
just started on LDN cream (working!) ~ allergic to pentasa and 5ASA's. I'm taking Boswellia Serrata (works!) Just came off Xifaxan. Making 24 hour yogurt (FUN!) Using Olive leaf liquid extract for candida, using silver sulfadiazine (new to me) on PG.


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 6/2/2009 7:28 PM (GMT -7)   
My GI wont let me take LDN, how did you get a prescription?
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/2/2009 9:14 PM (GMT -7)   
Both my GP & my GI are cool with it. Mostly b/c it's a "won't do any harm" kind of thing. My GP also does detox, so he actually was cooler with it than my GI, because he uses it in larger doses and actually has experience with it -- but this was simply a coincidence.

My GI is actually slightly annoying actually said my small success so far was placebo effect.

On the LDN yahoo board they have a list of docs available who will actually prescribe over the phone for a consult fee. Maybe you could check into that if no one you are seeing is willing to support you??

I think the only downside for me, besides the getting used to the side effect sleepwise, was having the nagging sense that I wish i could pop a vicodin without planning (gotta be off the ldn for a day or so first) and of course, the reason I posted in the first place -- C.

:)
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
just started on LDN cream (working!) ~ allergic to pentasa and 5ASA's. I'm taking Boswellia Serrata (works!) Just came off Xifaxan. Making 24 hour yogurt (FUN!) Using Olive leaf liquid extract for candida, using silver sulfadiazine (new to me) on PG.


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 6/2/2009 9:26 PM (GMT -7)   
What is the side effect sleepwise? Insomnia or the reverse?

55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Lap assisted sigmoidoscopy done May 11/2009


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/2/2009 9:38 PM (GMT -7)   
It's a strange sorrt of insomnia. it's goes away though.
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
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 PG. B-12 shots. Juicing veggies!


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 6/2/2009 10:22 PM (GMT -7)   
I have gone through 7 doctors already here in Canada and none of them will prescribe it to me. They seem scared to? Im at the last stage. Remicade and if that doesnt work surgery. :( I have a friend who has had crohns for 30 yrs in the US and has been on LDN for 15 months now and her quality of life has improved immensley. She has had one flare up which was so minimal that they just upped the dose for a little while and she is doing great now. She went from 15 to 20 BMs a day down to no more than 3 a day. She says that it feels great to go fishing and doing all these outdoor things with out any worries. It makes me so jeaulous lol. I want to be her.

The G.I. i see now thinks that it is more dangerous than humira or remicade. :( Its very frustrating. I hope it goes great for you and good luck.
Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/3/2009 6:18 AM (GMT -7)   
here is a link that might help you sort out ldn sources. I'm not sayin it's going to keep you from surgery, but it might help make you in the best shape for surgery. Your GI sounds difficult! Maybe you could try the phone consult doc and if he can't prescribe in canada you could trycompounding it yourself by the canada pharmacy in the links. Are you on remicade now, or just methotrexate?

http://www.webspawner.com/users/howtoobtainldn/index.html
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
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 PG. B-12 shots. Juicing veggies!


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 6/3/2009 9:34 AM (GMT -7)   
I am using LDN. I am also C now, and I am buying boxes of prunes and drink more water than usual to get rid of the C. It works. Nice to find more people interested in trying LDN. Have used it now for 2 years. Used to have obstructions regularly, and had just a little help from prednisone. LDN helped with the pain immediately, and the D dissapeared within 2 weeks. Most Crohnies get gradually better. I think it's worth to give it a try for those of you who consider it, because if you're not using pain meds containing narcotics it will be easier for you to try LDN. Remember you can't mix those. LDN and pain meds containing narcotics are CONTRAINDICATED. The yahoogroup that EMOM is writing about holds a list of all pain meds containing narcotics.
this is important: LDN helps 85 % getting better compared to the facts from a pilot trial done by Prof. dr. Jill Smith at Penn States. LDN bring 67 % in remission. GRADUALLY. this is also important: LDN is not to be used with immune modulators or suppressors.

To find a doctor: Contact the yahoo group who hold a list of doctors in the US and the UK. Or: go to your local pharmacy, ask which docs are prescribing LDN. Then call to make an appointment. Educate yourself, do researches and why not read even this:
http://jeffreydach.com/2009/04/13/low-dose-naltrexone-ldn-2-jeffrey-dach-md.aspx

The sleep problems: is a side effect and 20 % of those who use LDN get it. It lasts during the first week and you may wake up around 2 in the morning feeling wide awake - may be tossing and turning for half an hour before you sleep again. Some get it like this: it's not easy to fall asleep in the evening, some of those who get this problem the first week take melatonin to prevent insomnia. Remember: this is only a problem for the first week untill the body has adjusted. Other get's vivid dreams the first week. They are often vivid but not nightmareish.

MOST important: you have to take LDN in the evening after 9.pm. and before you go to sleep. The doctors prescribes Revia and send the rx to a compounding pharmacy, one of those are: www.skipspharmacy.com where your doctor or you can call to get information about LDN.
 
Cronicallyill: I was heading a surgery prior LDN. It's now 2 years ago. All my obstructions and all other symptoms are gone. I am not using anything else than LDN. The yahoo group keep a list of docs in Canada as well.
Here's a Crohnie- blogger who uses LDN;

http://ldnforcrohns.blogspot.com/2009/04/tips-for-those-new-to-low-dose.html

Post Edited (BeeSting) : 6/3/2009 10:45:37 AM (GMT-6)


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/3/2009 12:49 PM (GMT -7)   
BeeSting: thanks -- I was a C type before, and right now, it's keeping me C. I'm praying it lets up a little, but honestly if my obstructions and strictures ease up, like you I can start eating more fiber and maybe this will all balance out. I did read though that a C exacerbation might ease up around week 3 on a MS/LDN board.
I'm just over 2 weeks in.

What's your dose? At 3mg i can sleep, at 4.5 it's tough. Think I should back down? I LOVE the extra energy, love it love it love it. And within 14 days my symptoms are easing as I said in my post. Except C. LOL.
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
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 PG. B-12 shots. Juicing veggies!


littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 6/3/2009 2:23 PM (GMT -7)   
Can I ask? What is LDN Ive never heard of it?
Diagnosed 2005.
 
Current medication  -  infliximab infusions, ranitidine, ferrous sulphate, Vitamin B12 injections, asacol


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 6/3/2009 3:21 PM (GMT -7)   

I am going to ask my GI about LDN at my post surgery follow-up next week to see what he knows about it. I haven't researched it much.  Where do you put it on the scale of Crohn's drugs as far as risk? I already have the problem of not going to sleep, waking up, tossing and turning but don't consider myself fatigued.

Chronicallyill, what province are you from, I'm in Alberta.


55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Lap assisted sigmoidoscopy done May 11/2009


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 6/3/2009 3:59 PM (GMT -7)   
littlemissmuffet said...
Can I ask? What is LDN Ive never heard of it?


Low Dose Naltrexone. Here is a link:

http://www.lowdosenaltrexone.org/

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/4/2009 4:36 AM (GMT -7)   
Bammer, if you want to try it, really read up on it and make sure you're pretty much ready to manage yourself on it because your doctor pretty much knows less than you do. There is a great study as someone mentioned here by Jill Smith at Penn State for Crohn's that was published in 07 i believe in the Journal of Gastroenterology; if you want LDN you need to educate yourself and be armed with your reasons to get the doc to give it to you.

There is loads of patient related data online. So you can start at the link above and peruse all the information. Decide if it's right for you.

Me? I've had a disease like Tuberculosis (Brucellosis) so my ability to take the immunosupressives is not an option -- at least in my head, so the upside potential for LDN is high -- 87% of the patients in the Penn state study (a small population) went into remission.

The downside is trying to find a dose that lets me sleep correctly (and if you have patience this is pretty easy, just slowly work up on the dose -- read the Multiple Sclorosis literature) -- and having my GI ridicule me. Ill be the one laughing at her at my next colonoscopy/endoscopy (hopefully), so I'm cool with that. The greatest downside I suppose is that it is a waste of time and does not work. But that sure beats some of the side effects I've already gone thru. Because of my allergy to pentasa, I'm in the midst of the worst flare in my life. LDN will not ever do that.

The cost is low. It has to be made at a reputable compounding pharmacy, which I luckily have nearby, but there is a great list of places to get it. It costs me 32 bucks a month.

I think the most important thing is to be prepared and desiring to educate yourself. I probably have put 20 hours of reading into this before moving ahead. Others certainly less, but I'm an experienced researcher and wanted to be double plus sure that I was not going to harm myself in any way.

Oh! And if you start to wade around in the LDN community/links you'll find printable packets of stuff to take to your doc....

All the best.
strictures, crohn's, adhesions, endo. fighting Pyoderma G.
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 PG. B-12 shots. Juicing veggies!

Post Edited (janicea) : 6/4/2009 5:40:12 AM (GMT-6)


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 6/5/2009 9:05 AM (GMT -7)   
"...and having my GI ridicule me. Ill be the one laughing at her at my next colonoscopy/endoscopy (hopefully), so I'm cool with that."
 
You go, girl! Good luck!

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 6/5/2009 9:30 AM (GMT -7)   
njmom said...
"...and having my GI ridicule me. Ill be the one laughing at her at my next colonoscopy/endoscopy (hopefully), so I'm cool with that."


You go, girl! Good luck!


Ditto! yeah Keep us posted!

BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 6/5/2009 11:43 AM (GMT -7)   
I echo janiceas statements; go doing the research, the GPs and the GIs probably never heard of Low Dose Naltrexone. People have been using Naltrexone in brands as Revia since the beginning of the 80', that is for 25 years or even longer, but they have used it in doses from 50 mg a day to 300 mg a day. Those people have used it to block their opioid receptors. Even the dosages around 50 - 300 makes no toxic harm for the body, as far as I have been informed at the yahoo group. This group also has doctors and pharmacists and other medical staff as members, all very supportive and with much experience of LDN. Low dose naltrexone is a lower dose of naltrexone ;-), and this dose, often 3.0 mg and up to 4.5 mg is taken every night after 9 pm or 10 pm. I happen to know that some of the LDN users are taking the dose as a morning dose, and they say it's working great even then. The biggest consern have been that the endorphines may be wouldn't react the right way if you take it in the morning. But it seems that this may not be the case. I read that even Prof. dr. Jill Smith let's her participants take the dose also in the morning (sure to find out if it works even then), but traditionally everybody have suggest and still suggest that we take it at night.

Those who first started taking LDN was a group of people with MS. They are only using it at night as far as I know, they claim that it doesn't work at all for them to take it in the morning. You just have to test it.

What's so exciting is that if you have fibromyalgia, MS, lupus, arthritis, psoriasis and a whole LOT of other auto immune diseases, LDN may even help there. If you have asthma, allergies, try it, I know that people with these diseases have been helped too. As all other medicine, you never know which one is going to work for you, we who have Crohns know this for sure, so I am not giving anybody false hope, am I?

I just have to answer Bammer too: I know that there are risks in taking even an aspirin, I also happen to know the risks in taking other Crohns medicines; personally I can't have any of them, I have had cancer, and that disease may return if I use some of the Crohns meds, that is: all that is suppressing the immune system. So for me there is no options. The cancer I had required surgery and almost one kidney less, and statistically it may return. So my GI told me: our options is to do a resection because we can't offer you any medication.

You may find that naltrexone gives some small side effects; falling asleep isn't easy the first week for some (I slept like a log from first night) - and I sleep a good quality sleep, which I never did before. Some people wake up in the middle of the night the first week, and feel a lot of energy (it's the peak of the endorphine production). Some people have vivid dreams during the first week. (Not nightmares, could be funny dreams as well, or neutral dreams, but vivid). 20 % get a side effect like this. To help insomnia; buy some melatonin, that helps.

So LDN was heaven sent for me. I got better from day one, I have only had a few obstructions during two smaller flares these 2 years, during the flares I used prednisone during 14 days the first flare and 3-4 weeks the year after. Prior LDN I often had 2 obstructions every month!! for years). Without getting any medications!
I've found out that to reduce all stress and to avoid sugar, milk and wheat I do much better. And of course: I use the home made SCD yogurt.

Now remember: never narcotic pain meds and naltrexone. Also: the dose is: some is ok with 3.0 mg and some is ok with 4.5 mg. I used 4.5 mg untill this spring, now I've found out that 3 mg suits me well! You have to try yourself. 4.5 mg is the optimal dose though.
The capsule of naltrexone is on 50 mg. Therefore a compounding pharmacy has to make it into small pills
(don't use lactose as a filler though, many of us are lactose intolerant without knowing it).
 
At: http://www.youtube.com/watch?v=FRI5f69N2eo

you will find Dr.Mercola and dr. Berkson discussing LDN. When you're watching this link a lot of other LDN videos is available. Enjoy,

Post Edited (BeeSting) : 6/5/2009 12:51:04 PM (GMT-6)


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/5/2009 1:53 PM (GMT -7)   
BeeSting, thanks for this, the sleeplessness for me is an on-going issue at 4.5, after almost 3 weeks, I'm going to step it down to 3mgs for a bit. I weigh 128, is that about the same as you??

also what kind of pred do you take?
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 6/5/2009 2:23 PM (GMT -7)   
You COULD risk that 3 mg won't work for you. Why not get MELATONIN? This is the best choice when you have trouble falling asleep. Also try to take your LDN at 9. pm, for some nights (if you're taking it much later now), or opposite - try to take it just before you go to bed if your taking it at 9.pm. I have seen people doing this to figure out what time between 9.pm and 1.am that will be most favorable. Melatonin is a medication that is safe to take as far as I know. You can use it just for a week to be back on track. Other people are trying mild sleep aids to get helped with the LDN insomnia. A lot of LDN users don't want to start day time dosing, because they are afraid that it won't have any effects on the endorphine production that is on top in the middle of the morning. Due to the theories that LDN is blocking the opioid receptors for some hours just before the body starts to produce endorphins in the early morning it's best to take the dose at night. The low dose is tricking the body to produce more of the endorphins and betaenkephalins. Trials (LDN use and MS) have actually shown that the endorphins is increased up to a normal level.
Crohnies can start at the optimal dose 4.6 mg straight away if they want to. MS patients starts lower (often at 1.5 mg, and increases to 3.0 and so to 4.5 if that is their best dose) MS patients need to start slow due to tightening feelings in legs and spasms. Some of them get this worsening during some weeks and then it goes away. If they start at a lower dose the mentioned problems won't arrive).


When you've tried Melatonin, eventually a mild sleep aid you may consider a change to day time dosing. Keep 4.5 mg. Leave the experimenting of a lower dose untill your body are stable and LDN has worked for a year or more. I didn't change to 3 mg untill recently. It's harder to continue if you're starting to flare if you go lower in dose. :-) Hope this helps!
 
Oh, and my prednisone is small pills on 5 mg. It's regular prednisone. I've only used them twice, while having small flares. (or maybe the flares got so small because LDN and pred was a perfect combo? Just don't take pred with LDN before your dose is down at 10 mg pred- higher than that the pred is suppressing the immune system and LDN is boosting (parts of it).

Post Edited (BeeSting) : 6/5/2009 3:28:09 PM (GMT-6)


AmberG13
New Member


Date Joined May 2014
Total Posts : 1
   Posted 5/28/2014 1:34 PM (GMT -7)   
I realize this is a old thread, but BeeSting, would you still be around to tell us how you are doing on LDN now? My husband has a similar story to you with the numerous obstructions. Been on LDN for over 6 weeks now...
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 6:32 AM (GMT -7)
There are a total of 2,735,263 posts in 301,287 threads.
View Active Threads


Who's Online
This forum has 151394 registered members. Please welcome our newest member, haggis.
303 Guest(s), 9 Registered Member(s) are currently online.  Details
paul hutchins, at20148, VeryLuckyGirl, Paxton, Stanislav, Huddie, time2reclaim, Brendoni, sam12


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer