LDN...Did it work for you?

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dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 1/1/2009 1:14 PM (GMT -7)   
Hi: I know this topic has been discussed on this board, but I just recently heard of LDN. I am right now debating b/n Methotrexate and Remicade (Humira isn't working) and in sort of a bad state. If you have tried LDN, can you please let me know what you think and what your results have been with it. I am getting desperate.

Also, I am also still not sure why it is so hard to get doctors to prescribe it... is it because it is not FDA approved for Crohns?
Thanks for your help.
39 years old female, Dx'd 2000 Crohn's Colitis in entire colon
Allergic to Asacol/Pentasa/6MP/Immuran and many others (too many to remember)
Past meds: Cipro, Pred
Current meds: Humira (...and waiting for it to work)


Miss3
Regular Member


Date Joined Sep 2008
Total Posts : 97
   Posted 1/1/2009 6:58 PM (GMT -7)   
LDN can be prescribed as an "off label" use for crohn's, perfectly legal. Just as in the case where they sometimes prescibe antidepressants for pain relief. The only way I heard about LDN was because there's a local study being done at the moment where I am and my sister in law saved an article for me about it. Anyway, there's a lot of information at the website

http://www.lowdosenaltrexone.org/index.htm

You can sign up for the yahoo group from that link and post whatever questions you have and search through the archives.
You can print the info out from the website and take it to your next appointment if you feel it is something you would like to try.
Just like any drug, it does not work for everyone and some people experience side effects. Someone at the yahoo group has a list of prescribing doctors and you can request a list of those in your area.
Two thirds of people with crohn's and colitis claim to go into total remission so I'm hoping that I'm included in that lucky two thirds.
So far I have been at full dose for about six weeks. My crohn's/colitis is also in my entire colon, lots of bleeding issues. I have also recently started a daily probiotic, digestive enzymes, omega 3, and an all natural supplement called intestinal bowel soother. I am not sure if it's a combination of everything or if the ldn is starting to work for me but this past week has been amazingly better for me, surprisingly since I've been stuffing my face with a lot of "junk" over the holidays. I also have much worse issues with my cycle and am not near that yet this month so we'll see how that goes this time around.
The pharmacist said most crohnies notice the greatest improvemet sixty to seventy days and I'm not quite there yet.
I can tell you this for sure. I have been sleeping much better, except for a few dreams at the beginning, and I feel tremendously well on ldn. Of course, I was feeling so bad for quite some time and the sides from the remicade really made me feel like crap, maybe I'm just feeling normal now lol. No, really, I have more energy, probably due to better rest.

Take care,

Miss


 
LDN


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/1/2009 7:12 PM (GMT -7)   
I too have been sleeping like a baby since starting my LDN. There's mixed opinions on the best way to start the LDN, but I jumped in at 4.5mg (max dose), and have not noticed any detrimental side effects. When I began the LDN, I was also strictly adhering to a gluten free diet. about two weeks into the LDN, I felt like a MILLION dollars. I mean - my energy was back, my motivation was back... so I got stupid and thought that maybe I didn't need to mess with the gluten free nonsense. A month back on bread and pasta has proven otherwise. I have gone gluten-free again in the hopes that my diet combined with the LDN will bring me back to balance. I really did notice an improvement with the LDN right out of the gate though. It definitely helps me. I was even down to ONE bm a day. Hopefully I'll get there again soon!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 1/2/2009 7:45 AM (GMT -7)   

My experience with LDN was a disaster. I don't know if it was the LDN that caused it or coming of Imuran. Now I am trying like heck to get back to where I was before I started it two years ago.

There were two trials on it at Penn State. The first showed some promise but I have never heard the results of the second which was a better test.

However, no more "Off Labels" for me. Read my bio.

Dave D


Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again. Started Remicade every 4 weeks plus 20mg of Prednisone per day. Six months and seven infusions later, good eye is back to 20/14. Bad eye is 20/70. Had cataract surgery on June 05 on bad eye. Eye returned to a correctable visionary level of 20/50. 11/08 had reaction to Remicade; trying to keep going with Imuran and Pred. Need corrective eye surgery and fitted for prism lense to correct that eye from turning out.  Life looks fairly good (literally) today.
Married with 4 grandkids.


yori
Regular Member


Date Joined Jan 2006
Total Posts : 56
   Posted 1/2/2009 12:58 PM (GMT -7)   
I started LDN in february of 07 so it has almost been 2 years. I purchased from an online pharmacy and mixed it up myself by taking 50 mg naltrexone tablets quartering them and mixing with 12.5 mg water. I take aprox. 4.5 mgs every evening around 10 pm. I had moderate to severe crohn's. I gradually weaned myself off Imuran before starting ldn. I still have symptoms occasionally when I don't watch my diet. I try to eat healthy and stay away from processed food and gluten containing foods which seem to cause me trouble. I was not getting good results from imuran so I figured why should I keep taking it. I was on imuran for 2 years and still had symptoms. I discontinued it agaist the advice of my GI. He wanted me to start remicade along with the imuran. I guess I am a bit of a rebel and want to take my health in my own hands. I have had experience with too many incompetant drs. LDN certainly does help with my mood. I have a much brighter outlook on life. I know stress was also a big trigger for me. In summary it hasn't been a cure all for me but a tool for feeling better. I think it has helped me and I am not so worried about the side effects of imuran or remicade. Everyones medical situation and risk tolerance is different though. The best we can do is to become as well informed as possible before making these decisions. If your in a bad flare I don't think LDN would bring you out. I think it is more of a maintainance drug. If things would take a turn for the worse I would not hesitate to contact my GI again and would follow his previous advice.

Miss3
Regular Member


Date Joined Sep 2008
Total Posts : 97
   Posted 1/4/2009 8:55 AM (GMT -7)   
I agree Yori, I don't think LDN would bring you out of a bad flare, more for maintenance. I did talk to someone in the last study though that seemed to be in quite a flare when she started and swears it fixed all her problems. The second study is still going on at Penn State Hershey. The first study showed two-thirds go into total remission. I'm not sure when the second one will be done but we probably won't hear any results for quite some time. LDN is definately worth trying especially if you're running out of other options.
 
Take care,
 
Miss
 
LDN


atxcrohns
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/4/2009 1:54 PM (GMT -7)   

Hello all-  I am new to the group, but saw this post on LDN.  I joined in interest in what other Crohn's patients are currently using for treatment, because we found something in LDN and diet that really works.  My 14 year old son has severe Crohn's. We have been out of the mainstream for a while now, seeking better treatments because my son was refractory to every treatment to some degree, including Remicade, Imuran, anti MAP antibiotic therapy and all of the big guns.  In 2005, he was sent home from the hospital in a wheelchair (because of a severe fistula) and we were told Crohn's would make him weak and sick for the rest of his life and we had to learn to accept it.  Prednisone worked, but that, of course, is not a longterm option.  The doctors started getting stingy about giving out the prednisone prescriptions, even though that seemed to be his only lifeline.  He had severe, fistulizing Crohn's Disease with symptoms starting mildly when he was about 6 years old (bleeding and incontinence) and then later diagnosed.  He had long, frequent hospitalizations. Doctors were ready to do a colostomy. His growth was stunted and his bottom was like swiss cheese with all of the holes from fistulas, abscesses and fissures.

His only med is now LDN and he's also on a diet with no fermented foods.  No yeast, fungus (most additives are fermented in manufacturing, including corn syrup and vitamins [even the ones that say 'yeast-free' on the label]) or foods he has been sensitive to like tomatoes, potatoes, tea other than herbal or white tea, which is not fermented, and chocolate.

On LDN and the diet, He's had slow and steady weight gain and has now been growing out of his clothes after years at the same size. The past few days, I actually forgot that he he was ever sick! Zero symptoms. Active and healthy and happy. His fistulas are 90-95% healed and still slowly improving.

He takes 4mg LDN daily from Skip's Pharmacy with sucrose as the filler and he has also used the 50mg Revia pills dissolved in water with the same good results.  We follow the diet fanatically, because he gets a flare otherwise, although the LDN has made the flares from dietary slips less intense over time. 

My son, like many Crohn's sufferers, has an immunological response to yeast (like most, he is positive for ASCA), so it is very beneficial to keep it out of the diet.  Even though the doctors didn't seem to think it would work to avoid yeast (because yeast is "everywhere and cannot be avoided"), it has worked great.  We spent years figuring out the diet, then recently read The Yeast Connection as an afterthought and the diet listed there is pretty much the same, except our son still eats sugar and we have fine tuned it to his needs.  The only supplement we have found that is not derived from yeast is coral calcium, so he takes that along with eating very nutritious foods.  We used to think probiotics worked, but they never got him 'well' and we eventually noticed he was sensitive to them.  Also, he eats broccoli sprouts sprouted at home, although the Yeast Connection says to stay away from sprouts.  We just rinse them well and the nutritional value can't be beat.  We are big on foods that are high in nutrients.  One of the hardest things is staying away from vitamin enriched foods, especially flour and packaged foods, but we have found great brands of unenriched flour and pasta for cooking and baking.  Also, condiments are difficult because he can have almost no commercially prepared condiments (mostly because of vinegar), but the ones we make at home are great. Those vitamins used to 'enrich' our foods are cheaply made from yeast.

For my son, LDN and diet had to go hand in hand. One does not work without the other, but together they are truly a miracle.



Post Edited (atxcrohns) : 1/4/2009 7:37:14 PM (GMT-7)


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 1/4/2009 4:31 PM (GMT -7)   

My Crohns was like this: Partial obstructions during the last year prior LDN. Diarrhea and bleeding. Abdominal pain every single day. Cramps in the abdominal area, vomiting and fever during the partial obstructions. Muscle cramps in feet, legs, hands, face, fingers, waist, pelvic and abdomen. A crazy electrolyte balance. Anemic and Fatique. My GI told me he was almost 100 % sure my symptoms was due to a stricture and wanted to give me a surgery. It turned out he was wrong. My intestines was narrowed due to an inflammation. LDN got rid of it. And my narrowing was gone. I could eat whatever again without vomiting and getting partial obstructions. All tests prior LDN showed I had severe Crohns activity. The same tests now tells the opposite. No Xrohns activity.

LDN helped me with my pain from the first day, helped me with my diarrhea after some weeks,- and I haven't had ONE partial obstruction since I started using it 1++ year. Today I had a wok loaded with vegetables, chicken and hot spices. Fresh, uncooked onion, crispy vegetables and garlic. I even had a lot of brocolli. Couldn't tolerate ANY of this earlier.

You need to combine LDN with a better nutrition. I don't use any particular diet, I just don't overdo any of the bad stuff. Avoiding to overload my system with sugar, coffee/alcohol and cakes. I eat a little home made bread with reduced yeast. But I know that many LDN users may need to avoid yeast or gluten. It seems that Crohnies may be a bit sensitive to these. I also avoid eating too much carbs. I make all my food from fresh meat, fish and vegetables.

You can order LDN at alldaychemist.(com?) and you need a rx from your GP. I make my own by mixing 50 ml of water and a 50 mg Revia pill. In a baby bottle. I use a syringe to get it up. I store my LDN in the fridge. I pay 160 dollars a year for it. I take it every night after 10 pm. Started with 3 mg and increased the dose to 4.5 mg. All side effects dissapears within 10 days. 25 % gets side effects. The most usual side effect is insomnia and vivid dreams. Use some sleeping pills or melatonin. It will anyway stop during the first week. Read more about side effects at www.ldninfo.org. Don't use narcotic pain meds while on LDN. The pain meds will be blocked and you may feel withdrawal symptoms. Contact the folks on the suggested groups to get more advice. Vivid dreams they could be funny or nightmareish...but this also gets away short after the first week on ldn. /Good luck!

Ohh, and LDN is not FDA approved. It has been rx'd to other patients groups (50 mg and more) for 30-40 years. LDN is the same medicine but in a much lower dose. It is compounded so that we can use it in 3 mg - 4.5 mg pills. Then the name is Low dose Naltrexone. The original name is Naltrexone or Revia. It's not illegal to get a rx on this from your doctor. But most doctors have never heard of it. You need to be armed to your teeth with good information to bring with you. A lot of doctors says no, when you arrive the office without ANY information to tell them you want to try LDN. Don't do that. Give your doctor the possibility to know what he's dealing with. If not, they will only look at you as if you've grown two heads.

Post Edited (BeeSting) : 1/4/2009 4:38:14 PM (GMT-7)


Miss3
Regular Member


Date Joined Sep 2008
Total Posts : 97
   Posted 1/4/2009 4:45 PM (GMT -7)   

I did have a few dreams at first, nothing nightmarish though, maybe the one where I was prego again lol. We have three children and I'm done so that was not a pleasant dream. Anyway, one in particular I remember I was just reading in a bookstore, which I love to relax and read when I get a chance so that was a really nice dream for me. :) Other than that I really don't remember any dreams and haven't for quite some time.

 

Miss

 


 
LDN


dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 1/4/2009 7:16 PM (GMT -7)   
Thanks everyone for your thoughtful responses. I really appreciate. It sounds like LDN is a mixed bag and it depends on the person, which is pretty much to be expected. I just emailed my doctor about it who basically said he doesn't want to prescribe me LDN because there aren't enough studies to prove its success. He knows about it and I did expect that as his response. I go to a top GI in the Boston area and he's very fact/research-oriented. Unfortunately I like him, and would like to stay with him.

He wants me to go on Remicade rather than LDN. (I've had bad responses to ALL Crohn's meds, including asacol, pentasa, 6MP, and Humira... they literally make me worse... with Asacol and 6MP putting me in the hospital.) So, the thought of Remicade does not excite me.

To be honest, I've been flaring on and off for almost 4 years (8-10 bm's/day), after the birth of my daughter. It is not fun, and very tiring. And it's tiring trying to decide which medication to try next. Now I am not sure what to do.... I guess it's down to finding a doc who will prescribe me LDN (maybe with Pred to get me out of my never-ending flare) or trying Remicade. Ugh!
39 years old female, Dx'd 2000 Crohn's Colitis in entire colon
Allergic to Asacol/Pentasa/6MP/Immuran and many others (too many to remember)
Past meds: Cipro, Pred
Current meds: Humira (...and waiting for it to work)


atxcrohns
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/4/2009 8:27 PM (GMT -7)   

In response to patientspider above, my son also did gluten-free along with yeast free, then after he was on LDN for a while, he was able to start gluten again.  We waited about 6 months until we added wheat back to his diet.  He still cannot tolerate yeast at all.  So there is hope for getting the gluten back after you're feeling better for a while.  When you do, Hodgson Mill naturally white, unbleached, unenriched flour is awesome.   We tried several other whole wheat natural flours that didn't taste very good.  Starting with something homemade where you can control the ingredients, like a flour tortilla (with just flour, sea salt and warm water for the dough), is a good way to avoid other potential allergens like yeast.  We found that another safe recipe is the biscuit recipe on the can of Clabber Girl baking powder.  I substitute half and half containing just cream and milk (about 1/2 half and half and 1/2 water) for regular whole milk because it is hard to find whole milk without vitamin D3 added, which is derived from yeast.

In the mean time, I'm not sure how many people here on gluten-free diet may already have this recipe, but I found it online and it chases away the Crohn's/gluten-free blues (and the cravings for gluten).  We still use this for our pancakes, because we got used to these and like them better than the ones with wheat flour:

1 cup rice flour (Bob's Red Mill is best)
1 tbs. sugar
2 tsp. baking powder
1/2 tsp. salt
1 cup milk or rice milk (we use half and half and water like mentioned above)
1 egg, lightly beaten
2 tsp. oil

Mix all ingredients.  Cook on griddle as usual pancakes.  The pancakes will be thin.  Use pure maple syrup or homemade fruit syrup with just sugar and fruit.  Also good as a sandwich with eggs and homemade sausage:) 

 

 

 


 

 


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 1/5/2009 5:17 AM (GMT -7)   
atxcrohns, thank you for your recipes! Good to learn new ones.

When I started using LDN there was no other options for me due to medicines. I had just been through a surgery for kidney cancer, and my GI, one of my country's best, told me that I needed to avoid ALL kind of treatment (medicines) that could press my immune system down, he was afraid that my cancer could return if down pressed.
 
So therefore he wouldn't give me Remicade or any other Crohns medicine. He asked me to try to stay away from all food that could make me worse, and he told me that he wanted to give me a surgery asap, and that this hopefully could bring me in a long remission. He also informed me that it could be a shot in the dark, since Crohns could return within short time after the surgery, but we had to hope for the best. I would not be ready for medicines at all and have to avoid those as many years as possible.

I, like many others found out about LDN by a coincidence. I did it by reading in a MS site.
LDN is special in this way: it's balancing the immune system instead of suppressing it. It gives us three times more endorphines (results from an MS trial). Endorphines is strengthening our immune system to stay protected against all kind of diseases, I haven't had a cold since I started LDN. And I used to have those 2 - 3 times a year. There are trials done on LDN, but untill next year we'll only have different pilots to support our experience. I have read a lot of LDN and Crohns anecdotes, and it's surprising how many that is doing well on LDN.
 
My GI got a bit upset when I told him about this medicine that I have found on the internet. He wouldn't think me to be one that would be deluded on something I've found on the net. And a one pill cure all???!!!! Forget it! I told him more, and showed him the Penn State trials led by GI professor Dr. Jill Smith. My GI searched the net and told me at a later visit, when he heard that I still was symptom free, that he think this is interesting, and he would tell his colleagues about this in a meeting later. He also told me that he would do exactly the same choise as I did. Good to have such a GI -supporting me 100 %.

Post Edited (BeeSting) : 1/5/2009 5:24:53 AM (GMT-7)


Petes
Regular Member


Date Joined May 2004
Total Posts : 93
   Posted 1/5/2009 6:42 AM (GMT -7)   
I take 4.5 mg of LDN at bedtime.  This is the  only med I take except for Nexium.   I also take fish oil, borage oil, Vit D, Florastor, bosewellia.  Doc wants me to go gluten free but am having trouble following.  I feel a lot better.  More energy, less muscle pain, stomach more settled.  Methotrexate and humira did nothing except make me sick.  LDN to me seems like a no brainer to try and should be the first line of therapy.  It is very benign.  If it doesn't work, then bring the big guns in.  Oh, I forgot I also take minocyclene at a small dose to help my joint pain.

BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 1/5/2009 7:01 AM (GMT -7)   
May be LDN will be one of the first line therapies when phase 2 or 3's results are here? Some of us don't have any guts to get more damaged, so we've started using this almost homeopathic weak pill before the results are ready. It's a no brainer, yes, it has to be the safest medicine to take, because there is no known long term side effects. Remember the medicine has been used by human beings for 30 - 40 years, there is no known long term side effects.

The only side effects some of the users get is sleep disturbances/dreams the first 10 days. That is a no brainer. And who doesn't want 3 fold MORE BALANCED immune system, which also follows taking LDN! (I am not getting paid to tell this, I am only a enthusiastic guy, experienced the best that could happened to me)...and I so want to share. And the medicine costs at it's lowest price 150 dollars a year...Now THAT is a no brainer! You'll get rid of feeling low and having no energy. That is sure a no brainer too.

LauryLu
Regular Member


Date Joined Dec 2008
Total Posts : 75
   Posted 1/5/2009 9:34 AM (GMT -7)   
I have just started Humira. Is it ok to try LDN and be on Humira at the same time??
Age: 26 Female
Diagnosed at 6 with Crohn's
Bal-resection at 15
Plenty trials of steriods, anti-biotics, Asacol, Pentasa, Immuran, Remicade.

Admitted for severe flare 12/2008
Avoided surgery once again - 1 ft diseased, narrowed lower intenstine found
treated with high does steriod/antibiotics - currently weaning off Prednisone

started Humira 12/14/08


Miss3
Regular Member


Date Joined Sep 2008
Total Posts : 97
   Posted 1/5/2009 2:05 PM (GMT -7)   

Isn't Humira an immunosuppressant? I'm pretty sure LDN and Humira would work against one another.

 

Miss


 
LDN


Ricci
New Member


Date Joined May 2008
Total Posts : 9
   Posted 10/29/2009 6:23 AM (GMT -7)   
I started LDN about a month ago, and have gone from 1 to 3.5. Now, I seem to have more issues with my UC and wondered if I should back down the dosage (more looseness) or if this is just temporary. I am just fearful of creating a flow blown flare, which I have not had for years. Has anyone else experienced this?

Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 10/29/2009 6:35 AM (GMT -7)   
I tried LDN for 60 days. No significant improvement.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 10/29/2009 8:58 AM (GMT -7)   
dietcoke said...
...I go to a top GI in the Boston area and he's very fact/research-oriented. Unfortunately I like him, and would like to stay with him.

He wants me to go on Remicade rather than LDN. (I've had bad responses to ALL Crohn's meds, including asacol, pentasa, 6MP, and Humira... they literally make me worse... with Asacol and 6MP putting me in the hospital.) So, the thought of Remicade does not excite me.
I am also in the Boston area!  I am still waiting to hear back from my GI about LDN (emailed her yesterday.)  If I were in your shoes, I would insist on the LDN BEFORE the Remicade.  I mean, it doesn't even sound like Humira is working that well and doctors / researchers have said that LDN has very few side effects ... sounds like your doctor is maybe being a little bit too conservative :-)  My personal plan is to combine LDN with the SCD (which I am already doing) and get rid of Entocort.  By the way, have you tried Entocort -- it's sort of like a asfer version of Prednisone?
34 Year Old Male
Crohn's Disease for 12 Years
Current Medications: 9mg entocort (budesonide)
100% SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries
 


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 10/29/2009 5:36 PM (GMT -7)   
Don't use any immunosupressors or biologics, exept for prednisone in doses from 10 mg and down, or entocort from 3 mg and down. Prednisone and entocort does not suppress the immune system when at those lower doses. Asacol is ok to use with LDN and could be used as long as you want. Pred as a maintanance dose could also be used at a long time span.

LDN is as I wrote earlier increasing the endorphins. Actually they have found LDN to increase the endorpine level up to 300 %. LDN is balancing the immune system so that the immune system is doing the job it was ment to do; killing the bad guys (pathogens and bacterias) instead of attacking the Self. (The inside of the intestinal walls).

LDN needs more than 3 months to get all the endorphins, betaenkephalins and opiate growth factor back on track. 60 days to try LDN is a bit too short. I now have learned that it's wise to avoid certain food to help LDN in some cases. (I didn't have to change my diet, though). I often find people using the SCD diet, or a gluten free diet or a yeast free diet in combination with LDN. A lot of parents do this for their kids with great results. To learn more, you may want to go to one of the many yahoo groups, there are groups for those with IBD using LDN, btw
have you seen this video?
http://www.youtube.com/watch?v=CVpjsDK0LPA

he is a TV dr. and the UKs answer of Dr.Oz and very popular.

I have used LDN for more than 2 years, I have had a few flares, but they never last as long as before, just 10 - 14 days. I was told to use pred in low doses, so I used from 10 mg and down during the flares, they subsided and was nothing compared to earlier. Both flares have been due to a stressful period of time. LDN was of great help during these flares, I am quite sure that because of LDN my flares was way shorter lasting than before.
 
carnival huxter:
entocort is a steriod as prednisone. When you use 10 mg of pred its app. the same as 3 mg of entocort.


Thanks to atxcrohns for telling us about the yeast experience, I have learned that many Crohnies can't have yeast or fermented food. /Bee

Post Edited (BeeSting) : 10/29/2009 6:39:59 PM (GMT-6)


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 10/29/2009 8:23 PM (GMT -7)   
LauryLu said...
I have just started Humira. Is it ok to try LDN and be on Humira at the same time??

I read somewhere that they should never be mixed.  You have to stop the anti-TNF several weeks (months?) before ramping up on the LDN.
34 Year Old Male
Crohn's Disease for 12 Years
Current Medications: 9mg entocort (budesonide)
100% SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries
 


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 10/29/2009 8:27 PM (GMT -7)   
BeeSting said...
entocort is a steriod as prednisone. When you use 10 mg of pred its app. the same as 3 mg of entocort.
Bee -- My experience has been different from this.  10 mg of prednisone was much harder on me that 3, 6, or 9mg of entocort.  My doctor (and own personal research) also told me that Entocort was safer than pred when used for longer periods of time.  They are both horrible medications to be on -- especially long term -- but in my case have been a "necessary evil" so to speak while I am waiting for the SCD to kick in.  Hopefully my doc will OK the LDN ... she is usually pretty cool about stuff like that.
34 Year Old Male
Crohn's Disease for 12 Years
Current Medications: 9mg entocort (budesonide)
100% SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries
 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 10/29/2009 8:38 PM (GMT -7)   

My daughter has been on 4.5 LDN, mixed with one pill Entocort (3mg), for several months - the first week, some fatigue, lack of appetite, gas. But then it settled down.

The labs show that LDN has reduced her sed rate from 8 to 2. CRP is low, too. Also, no side effects.

So for the last five weeks she has been slowly tapering off Entocort by taking it every other day - we are waiting for labs to tell us if the sed rate and CRP continue to be low. Also, whether there are any hidden side effects.

We should find out tomorrow. If they look good, she goes completely off Entocort (the last time she tried to do this, she ended up in a hospital in 2006).

She is also on a strict diet - almost identical to SCD, except she does choose to eat potatoes and rice.

Her health and general immune system appear to be great. No symptoms even before she took the LDN, because the diet and Entocort controlled the Crohn's. Right now it is looking good for her to go off steroids for the first time in years. 

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