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staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/28/2010 1:49 PM (GMT -7)   
I started 1.5mg of LDN 2 weeks ago and have just gotten approval to move on up to 3mg tonight. I was wondering how long it takes people to see results. I was on Humira and Immuran and had to quit them due to a severe case of shingles the end of May 2010. So, my CD has kicked in. I know that everyone is different just wanted to have an idea of other peoples response to this med.
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,

Post Edited (staci100) : 6/28/2010 4:25:51 PM (GMT-6)


cupcakespinkgal
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Date Joined Jun 2010
Total Posts : 1277
   Posted 6/28/2010 3:23 PM (GMT -7)   
I am starting LDN on Friday so I can't say yet from personal experience, but I have read varying opinions on this. I really research stuff before I try anything and I have read some people see results pretty quickly after being on a dose of 4.5 mg other say it takes a few months to see progress. I have a friend who is taking LDN for UC and she said it took a couple months for her. After 2 months she almost gave up because she was seeing no difference and then she felt great. She has been on it now for 4 months and is doing great, said she doesn't have any symptoms and hasn't felt this good in 10 years!
Diagnosed with Crohn's in 1998, father has UC we were diagnosed at the same age.

Currently on 15 mg Prednisone, 4g Sulfasalzine, VSL#3, B complex, Calcium, Magnesium, D3 and Passion Flower. Previously on Remicade, just stopped Humira after 9 months, wasn't working.

No surgeries so far.


staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/28/2010 3:29 PM (GMT -7)   
Thanks. I also research heavily before taking meds and didn't like what I read about Humira. My GI has no idea that I am on LDN. He actually lied to me when I inquired about it. Anyway, I found someone else and the side effects are so minimal that I just had to try it before I went back on Humira. I had to be hospitalized b/c the shingles were so severe due to the immunosuppressants. I am excited but I guess I want what everyone wants.....results overnight!!! Hahah!!
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,


cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1277
   Posted 6/28/2010 4:03 PM (GMT -7)   
I am not a fan of Humira either. I started it in September last year, I had 2 pretty big flares while on it, my doctor kept saying to give it more time he thought it was helping. Well this Spring I got a Fungal skin infection and from my research I think it was from the Humira, finally getting it to clear up. I have been off the Humira now for 4 weeks. My friend with UC is who recommended I try the LDN because my doctor was wanting me to go back to Remicade and I really want to try something else before that.

My GI doctor acted like he new nothing about it, I even showed him the study in Hershey, PA and he said he didn't see how it would work and wouldn't prescribe it! We shall see, I am really hoping I am right and he is wrong on this one. After all, I was back on 40mg of Prednisone while on Humira, I stopped the Humira and between supplements, diet, and sulfasalazine have myself down to 15 mg of Prednisone and feeling great, all without his help!
Diagnosed with Crohn's in 1998, father has UC we were diagnosed at the same age.

Currently on 15 mg Prednisone, 4g Sulfasalzine, VSL#3, B complex, Calcium, Magnesium, D3 and Passion Flower. Previously on Remicade, just stopped Humira after 9 months, wasn't working.

No surgeries so far.


staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/28/2010 4:23 PM (GMT -7)   
Well, I have to tell you what my GI said about LDN. He told me that it was only for Heroin addicts that had destroyed their intestines! I had always had faith in him but wow.....did he take me for an idiot or what!!! I took all my research to someone else who is a little different type of medical practice and they researched it themselves and went to some conferences and finally called me and let me know they were now prescribing it. They called about 4 months before I went off of Humira so I figured no time like now to try it.
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 6/28/2010 6:55 PM (GMT -7)   
LDN stands for low dose naltrexone. It's true that naltrexone was used to treat heroin addicts - but that is in a much higher dose.
 
The GI was right about the historical use of naltrexone, but not about today's use of the lower dose of naltrexone to treat Crohn's - looks like he hasn't been keeping up on the latest research.  

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 6/28/2010 7:06 PM (GMT -7)   
For heroin addicts that had destroyed their intestines? That's a new one! The full dose is used to keep them from getting a high.

I've heard LDN can take anywhere from a few days to 9 months to work at it's full potential. I haven't taken it in the last week because I'm having an endoscope tomorrow. I've had a terrible time getting to sleep the whole time. I can't wait to restart it!
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/28/2010 8:54 PM (GMT -7)   
I know it was used to treat heroin addicts but not b/c they have damaged their intestines..... Thanks for the info on the time frame. I can only hope and pray that I will respond in the shorter period. Good luck on your endoscope!
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,


dms40
Regular Member


Date Joined Oct 2009
Total Posts : 37
   Posted 6/28/2010 10:43 PM (GMT -7)   
Staci, 2 things to remember with LDN, make sure you get it compounded without Lactose, and ask for quick release Naltrexone.  I thought I had set this up with the pharmacy when I first got the prescription last August, but then found out that it hadn't been entered into the computer and my son's next LDN was compounded with Lactose, this was in Dec/Jan, he had a blood test at the beginning of Feb and his CRP had gone back up to 36, he was experiencing signs of heading into a flare (blood, D, nausea, urgency etc)  it took until may for the CRP to come back down again.  I now mention EVERY time that it needs to be lactose free and QR, they say, oh yes it's on his file, but I still mention it.  
So for him LDN and HBOT = 4 weeks to respond (CRP went from 48 down to 3 - based on blood test), LDN alone = 4 months to respond (based on how he's feeling, and blood work done in May.)   Next blood test in August - so we'll see where he's at then.

comedybob
Regular Member


Date Joined Jan 2010
Total Posts : 241
   Posted 6/29/2010 6:01 AM (GMT -7)   
I too have been researching LDN. We have the go ahead from our Alt.Med Dr., and the collegeof Physicians and Surgeaons in Alberta has approved the off label use. Yay. Anyway, one thing I took notice of is that on LDN you have to be off of immunosuppresents, because of the opposing effects.
bob b
13 year old son diagnosed at 9,
one month of pred at beginning 
2 years of immuran ineffective
SCD seemed to help(less pain gained 8 pounds in three months)
considering Remicade


staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/29/2010 6:53 AM (GMT -7)   
dms40
I just called the pharmacy and yes it does have lactose in it as a filler. She told me some huge name that she can replace it with that is plant based.....wonder if that is okay? Also, she said that it was not extended release so does that mean that it is quick release?? Thanks so much for this info....it is really nice to have this as an aid as I try all of this.
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,


dms40
Regular Member


Date Joined Oct 2009
Total Posts : 37
   Posted 6/29/2010 8:28 AM (GMT -7)   
comedybob, is this for your son?  When I researched LDN it was definitely recommended that you be off immunosuppressants, having said that, I know a couple of people that were on Imuran and then weaned off of it while taking LDN and it seemed to work out okay for them.  Two other things I've heard is that you should not be on pred for longer than a week while taking LDN (can't quite remember the reason why right now), also that you should address yeast in the body.  We did this by using a natural product called Candacin by Seroyal, this is a fabulous product - I also suffer from the odd yeast problem - Candacin stops it in it tracks like nothing I've tried in the past, just remember to take a probiotic 2 hours away from the yeast product.
I don't know if you've been reading the other thread that Staci100 and I have been chatting on Hyperbaric Oxygen therapy, but if you're at all interested in HBOT and you're in Alberta,  if you can get a Dr. to prescribe HBOT I believe it's covered by Alberta medical insurance.  Just something else for you to think about.
 
Staci100 a plant based filler should be fine - if you have more questions try to call Skip's pharmacy, they seem to be the experts in the states on LDN for Crohn's /MS etc.   I know Avricel and Acidophilus are 2 recommended ones.  Yes, not extended means quick release.  Your very welcome for the info - glad someone else can benefit from the hours of research I've done:)
 

staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/29/2010 9:52 AM (GMT -7)   
I have been checking out Skips. Will call them when I get back
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,


comedybob
Regular Member


Date Joined Jan 2010
Total Posts : 241
   Posted 6/29/2010 10:37 AM (GMT -7)   
It is for my boy, and he has been med free for 21/2 years, so we are okay with it. at this time, we will fill the prescription only as a cautionary. he has been doing well with diet(up 9 pounds since January).
dms40 said...
comedybob, is this for your son?  When I researched LDN it was definitely recommended that you be off immunosuppressants, having said that, I know a couple of people that were on Imuran and then weaned off of it while taking LDN and it seemed to work out okay for them.  Two other things I've heard is that you should not be on pred for longer than a week while taking LDN (can't quite remember the reason why right now), also that you should address yeast in the body.  We did this by using a natural product called Candacin by Seroyal, this is a fabulous product - I also suffer from the odd yeast problem - Candacin stops it in it tracks like nothing I've tried in the past, just remember to take a probiotic 2 hours away from the yeast product.
I don't know if you've been reading the other thread that Staci100 and I have been chatting on Hyperbaric Oxygen therapy, but if you're at all interested in HBOT and you're in Alberta,  if you can get a Dr. to prescribe HBOT I believe it's covered by Alberta medical insurance.  Just something else for you to think about.
 
Staci100 a plant based filler should be fine - if you have more questions try to call Skip's pharmacy, they seem to be the experts in the states on LDN for Crohn's /MS etc.   I know Avricel and Acidophilus are 2 recommended ones.  Yes, not extended means quick release.  Your very welcome for the info - glad someone else can benefit from the hours of research I've done:)
 

bob b
13 year old son diagnosed at 9,
one month of pred at beginning 
2 years of immuran ineffective
SCD seemed to help(less pain gained 8 pounds in three months)
considering Remicade


staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/30/2010 3:47 PM (GMT -7)   
I went up to 3.5 mg and everything is fine so far.....not sleeping great but getting plenty of sleep anyway.
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,


cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1277
   Posted 6/30/2010 5:03 PM (GMT -7)   
staci100 have you been tested for Candida? Even if you have mild Candida I have heard LDN works better and people see better results if they get Candida under control. Just a thought!
Diagnosed with Crohn's in 1998, father has UC we were diagnosed at the same age.

Currently on 15 mg Prednisone, 4g Sulfasalzine, VSL#3, B complex, Calcium, Magnesium, D3 and Passion Flower. Previously on Remicade, just stopped Humira after 9 months, wasn't working.

No surgeries so far.


staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/30/2010 7:59 PM (GMT -7)   
The dr. I went to this week is going to test me for that. I did the at home test that is not a positive thing and it told me that I have candida. I told him about it. I feel sure that I do.
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 7/1/2010 1:59 AM (GMT -7)   
Hi,
I have used LDN for 3 years by now. Some of my symptoms dissapeared within a short time, and some gradually. I had a few mild side effects, slept like a log, but woke up the first week during the night feeling full of energy and ready for a new day, also had some vivid dreams, they were most funny dreams, but a few scary ones, too. I was used to have obstructions a couple of times each month, but haven't had one for a long time.

It's of great importance that you increase your dose to the optimal 4.5 mg within short time, you don't need to do as people with Multiple Sclerosis, they do a slow start due to spasm problems. Phd. dr. Jill Smith, the dr. responsible for the phase II trial at the University of Penn State, always started her patients at the max dose immediately. Now, doses are individual due to LDN. Most people is ok with 4.5mg. You could also feel better staying at 3.0 mg or less, but a few of us is feeling best at doses more than 4.5 mg. (recommended up to 6.0 m/day) Take LDN after 10 pm and before 2.am. Most people is ok with this. A few of us is feeling better if the medicine is taken in the mornings. But we have been told that the safest time to take it is in the evenings, due to the immune systems endorphine production. A few people have extended side effects like being sleep deprived for a longer time than the normal first week where we find all the side effects, then you may try to take LDN in the morning. So only if LDN is giving you big trouble sleeping. Falling asleep is of great importance, and taking Melatonin may help you during the first week.

LDN is not giving hard side effects, if any, but if you get side effects they are minor; vivid dreams (25 %), getting problems falling asleep, just a few %, some are getting (increased) diarrhea, this is often due to LDN waking up an underlying candidiasis, and as soon as it's treated, we're all right with LDN.

In some cases LDN needs you to change your diet either dramatically or just a few adjustments. The least thing you should do is to use fish oil (double dose), a good probiotic, and reduce all coffein use. You need to avoid keeping your body being over acidified. The change in diet does not need to be overly dramatic, just avoid too much sugar and reduce the use of yeast and wheat. You could read a little on how to balance the diet on alkaline nutrition.

Personally I didn't have to change my diet, I am feeling great on LDN, but I have tried to avoid gluten for a long time, and it seems that I am better off without gluten.

Dr. Skips Pharmacy have a well educated staff who knows a lot about LDN. You could always call them if you have a question or two, as far as I know they are terrific in advicing people.

Due to medicine with LDN: it's correct, don't use humira, remicade or any other immune suppressors while on LDN. Neither use pain pills containing narcotics. There is a lot of over the counter pain meds without, and you're better of using these. If you're trying to combine a narcotic pain killer you will get no pain relief. Naltrexone is using the same receptor as this medicine, so if you've taken LDN, the receptor is occupied and will be for another 24 hours, no pain med will work.

If you need to use prednisone, I have learned that taking 10 mg of this medicine a day (or less) is ok. Prednisone is not supressing the immune system when the dose is as low as 10 mg and less. Don't hesitate to use Asacol. This group of medicine is ok to use with LDN. Use it as long as you want, and taper it if you want when you feel the time is right.

Personally I have used a low dose of prednisone, from 10 mg and down with LDN a few times during 3 years due to flares, and the result has been fantastic; the flare has stopped within a week, and I have used 2 more weeks to taper down the pred. Tip: increase the dose of fishoil (containing omega 3 and vitamin D, if not, change it to one that does). There is a yahoo group with 300 listmembers, all using or concidering to use LDN, the groups name is LDN and IBD, search for it at yahoo.

In this group we have some parents giving LDN to their kids, with great success./Bee

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1277
   Posted 7/1/2010 3:49 AM (GMT -7)   
I was taking Fish Oil for awhile and stopped. But I don't think mine had vitamin D in it. Why is it important to have those 2 in the same supplement?
Diagnosed with Crohn's in 1998, father has UC we were diagnosed at the same age.

Currently on 15 mg Prednisone, 4g Sulfasalzine, VSL#3, B complex, Calcium, Magnesium, D3 and Passion Flower. Previously on Remicade, just stopped Humira after 9 months, wasn't working.

No surgeries so far.


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 7/1/2010 6:49 PM (GMT -7)   
I'm glad a bunch of other people are starting LDN too. I just started taking it 3 days ago. My sleep is getting less disturbed as the days go bye but I'm noticing no real changes in the GI symptoms yet. I do feel more tired than usual during the day though. I hope this doesn't persist.
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade from 6/09 to 4/10
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/1/2010 8:08 PM (GMT -7)   
My daughter was really tired when she first started LDN. As soon as she came home from work, would take a nap...but after about a week or two this symptom vanished.

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/1/2010 9:56 PM (GMT -7)   
BeeSting, what over the counter pain meds are recommended? This is my one fear about LDN, needing pain meds but not having anything I can take.

jp, when I tried taking LDN at the full dose (4.5 mg) I was horribly tired all day. Someone recommended I lower it to 3 mg, and the fatigue went away. There's a formula that says your dosage of LDN should be your body weight x .03. For me, that equals 3 mg.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 7/1/2010 11:32 PM (GMT -7)   
Cupcacespinkgal:
You don't have to use fishoil containing vitamin D, you could buy them separately. It's just that buying fishoil containing it will give you more bucks for the bang. Check out what kind of vit D you're actually needing, there are a few types. (but the correct one is within the fish oil). Krill oil is the best choice, imho, because Krill oil (red capsules) is containing a lot of asthaxantin, which is a powerful antioxidant, which is cruicial for us.

njmom:
Well, I know all about being really tired when on LDN, I was in a deep need of sleep the first months after starting LDN, for me it's just hard to find out if it was a reaction to a kidney surgery (renal cancer) I had a couple of months prior to LDN, or if it actually was LDN that made me that tired, or maybe both.....

jpnutritionfirst:
It's one of the normal reactions, sleep when you're tired, if you're able to, this will often last for just a few weeks. The immune system is adjusting, and our body reacts in different ways. Side effects like tiredness, vivid dreams and other is known to stop after 7 - 10 days. In a while you're expected to get increased energy. Don't overdo it, you need time to get used to getting your good old energy

Spookyhurst:
I am not familiar with any pain meds that is sold in any other country than my own, but ask for pain meds without narcotics and that is not doing any harm to the stomach or intestinal walls, there should be quite a few brands, just tell your pharmacist that you're having Crohns and that you're reacting to acetyl-acids.

Oh, and: don't overdo the fact that you will be able to eat food that you earlier had to avoid, I know that many on LDN get too eager to have terrific meals with all the earlier triggers. Don't! ;-)
Bee

Post Edited (BeeSting) : 7/2/2010 12:39:12 AM (GMT-6)


staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 7/2/2010 6:11 AM (GMT -7)   
BeeSting

I have never had pain from CD until now. I feel pretty sure I have candida. Do I need to be checked, need a prescription, or are over the counter meds effective. I've got to get this ball rolling!!
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 7/2/2010 9:23 AM (GMT -7)   
when will i be able to experiment with eating my forbidden foods? in a few months?
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade from 6/09 to 4/10
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc

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