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10-26-2011, 10:36 PM   #1
samilou
 
Join Date: Jul 2011
3 weeks on LDN !

After a year and a half of hospital and failed meds. our GI was recommending J-pouch surgery for our 11yr old daughter. With alot of info from this site and research we finally talked our GI into LDN. With 3 weeks of treatment her BM have gone from 12 to 3 and her first blood test came back good with Sed rate going from 80s to 11 and our GI was almost speechless when she called and even upped the prescription for 2 more mos. without us even asking. We still have a long way to go but hopefully this is something that works for her and will keep posting on her progress.Currently on 3mg LDN, Hollistics, no dairy,gluten,or wheat.
10-27-2011, 02:18 PM   #2
xJillx
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Wow! What an improvement in 3 weeks. I hope things continue to go in that direction.

Please, please, please keep us posted!
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Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
10-27-2011, 04:06 PM   #3
D Bergy
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When it works, it is one of the best treatments available.

I am especially happy that a child has been saved from suffering using a very safe treatment.

Dan
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Nothing I post here is to be construed as medical advice. I am not a doctor or health professional.
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11-04-2011, 04:28 PM   #4
samilou
 
Join Date: Jul 2011
Just finished the 5th week of LDN and a visit with our GI and everything still going good and getting better! Down to 2 bm a day and lots of energy and being able to enjoy things again. GI said no blood test or visits for a month, still taking it one day at a time.
11-04-2011, 04:52 PM   #5
kiny
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Good for you Sami. Does she dream normally.
11-04-2011, 06:48 PM   #6
samilou
 
Join Date: Jul 2011
Just a couple of funny dreams the first week and a couple of sleepless nites but other than that all good. Atleast we know the LDN is in her system.
11-24-2011, 12:39 PM   #7
samilou
 
Join Date: Jul 2011
Just an update, 8th week on LDN and the roller coaster ride has begun! Trying to finish up the Pred. weening and the blood and D have started again
mostly in the morn. and alot better in the aft. drives us crazy.GI upped the LDN because of her weight gain the past months of being on pred. she was at 3mg butmoved up to 3.75 bleeding seemed to worsen on the move up. Hard to not be dissapointed but we knew going in there would be bumps in the road after the pred. weening and waiting for LDN to hopefully take over.Happy Holidays to everyone!
11-25-2011, 07:50 PM   #8
xJillx
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Thanks for the update. I hope the roller coaster ride ends soon, and the LDN starts kicking in very soon. Crossing my fingers!
11-25-2011, 08:05 PM   #9
LittleChloe
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I just thought I should let you know that this is now Chloe's 5th week on LDN and she is doing pretty good. However last week we finished weaning off the pred and she did have a mini flare with body aches, D and even a temperture. We did ensure shakes for a few days, she rested and we really watched her. In a few days she felt better and went back to school and it never turned into anything more. As you know we are very new to this but it seems to be a difficult turn to make when they go off predinisone. Hopefully everything will round a corner for Sami soon. Please keep posting!
11-25-2011, 08:36 PM   #10
D Bergy
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I have a question regarding the dosage of Prednisone that Chloe was at when she started taking LDN.

I am currently tapering off Prednisone, and taking Lialda. I plan on going back on LDN, dumping the Lialda, but do not know at what point I should do it. I am at 15 mg Prednisone presently.

What dosage of Prednisone was Chloe at when she started the LDN?

Thank you.

Dan
11-25-2011, 11:49 PM   #11
LittleChloe
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Chloe started out on 40 mg pred and tapered down over the course of six weeks. By the time she got started on LDN she was down to 10 mg pred. a day. We started LDN at 1.5 and built up to 4.5 which she is taking now. I had read that LDN works best when you aren't taking immunosuppressant drugs and that prednisone is not considered immunosuppressant when its 10 mg or less. Her GI DID want her to get started on LDN while she was still tapering prednisone. So far so good. Best wishes to you Dan
11-26-2011, 12:00 PM   #12
D Bergy
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Thank you for the information.

I will wait until I am down to 10 mg of Prednisone before starting back up on the LDN.

I hope Chloe does well on the LDN, and please keep us posted on her progress.

Dan
11-26-2011, 03:21 PM   #13
samilou
 
Join Date: Jul 2011
Glad to here Chloe got over the fever, Sami will be at 10mg of pred. tomorrow and hopefully seeing some better days ahead.
11-26-2011, 03:57 PM   #14
D Bergy
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I hope Sami stabilizes soon. LDN rarely works in a straight line, especially when you first use it. Dosages sometimes need to be customised for the individual. Prednisone has so many strange effects by itself, I sometimes wonder if it is helping or harming me. At times it seems to be doing both.

It is good to see people posting their LDN results, as this is an important part of learning about a treatment that is under utilized, especially for children. Your experiences may help someone else in the future. In fact, I am sure it will.

Dan
11-28-2011, 03:03 PM   #15
xJillx
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Prednisone has so many strange effects by itself, I sometimes wonder if it is helping or harming me. At times it seems to be doing both.
How long have you been on Lialda? I took it for about a year, but I have recently stopped as per my GI (long story). To be honest, I think Lialda was causing many of my issues. I still have GI issues for sure, but ever since stopping Lialda, I have had much more normal bathroom habits.
11-28-2011, 05:35 PM   #16
D Bergy
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I have been on Lialda all Summer and am still on it. I do not know how much it helps now, but I did skip a dose when I was in a lot of pain, and I noticed it right away. I suspect it also causes some intestinal upset when I take it, but it goes away.

I split the dose as it seems too much to take all at once. I plan on stopping using it once I get off of the Prednisone. That way I can see how much it is doing, or if it is causing me other problems.

The nurse practicioner wants me to stay on it for life, but I will use LDN instead since it worked for me before, and it treats the problem more so than the symptoms.

Getting my vitamin D level up over 50 is another important part of my treatment. I do not know if it will have any impact on the disease directly, but it certainly will not hurt any. Low D is suspected in so many diseases, it is cheap insurance to keep an eye on it.

I use various treatments, many alternative in nature. Between them all, I think I will do just fine. I have been treating my wife, and myself, for a while now, and I get better at it, as I get more familiar with the nature of the diseases we have.

Dan
12-07-2011, 12:02 AM   #17
samilou
 
Join Date: Jul 2011
Week 10 on LDN seems to be making slow progress for the better. Sami still has some bleeding but not like the past week, mucous still there, but bm have gone from 8-10 to 4-5. She has had some aches and minor fever but think it's a blend of weening pred. and some inflamation but will know a little more this week with blood results probably will see some elevations from week 2-6 on higher pred. and LDN. We will also be changing from transdermal and split it up with oral one nite and cream the other before going to all oral liquid. Do have a question, should we count the weeks on LDN when she was taking it with 40mg pred. or was that cancelling it out and start counting the last 2wks. that she has been at 10mg pred. Skip said to give it atleast 90-120 days and don't know if we should count the first 6-8wks. Keeping are fingers crossed things stabilize and improve.
12-07-2011, 09:37 AM   #18
LittleChloe
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All the research I've done has said that LDN is not nearly as effective when taken with immunosupressants. In fact the one LDN study that did NOT have good results was done in Ohio with MS patients who were still on their immunosuppressant drugs when they started LDN. It certainly seems like LDN has helped Sami even with the prednisone. Still, I would start counting the weeks now because she hasn't been given the chance to receive the full benefits until she got down to 10 mg pred. Wishing you well!
12-08-2011, 01:23 PM   #19
Bustersmom
 
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I've been on LDN for about 8 months. I'm doing much better! I had big trouble with drug side effects. My doctor started me on 4.5 mg of LDN to take at bedtime. It was too high a dose for me. It did some strange things to me after the first 3 months, I was very tired, had a big itchy skin rash on my leg and my D came raging back. I switched to 3 mg. and I've been fine for the last 5 months. Don't give up on this if you get similar side effects. . I could be you need a lower dose. I'm doing great, No D , but It isn't healing my fistulas like i hoped it would. Not yet anyway. Bree
02-07-2012, 11:27 PM   #20
samilou
 
Join Date: Jul 2011
Sorry it's been so long so here's the latest with Sami. She had a hard time with it getting down to 10mg of pred. but after 2 wks. of being there she started to respond well and things were good for a month. She started back to school for the first time this year for a few hours a day and then got strep and a cold on top of that and went into a flare. The bleeding was'nt as bad as pre LDN flares but we were worried cause she was getting fever and nauseau. We took antibiotics and have finally gotten over the strep and cough has finally gone away in the last 2wks. I can't say things are great but we are down to 5mg. pred. and will be trying to get off completely in the next month or so but everyday seems to be a little better than the last. We are past the amount of time that most say to try (close to 5 mos.) but are going to continue for a while since we have seen some good times since starting it. Will try to keep more up to date on progress!
02-08-2012, 01:59 PM   #21
SnowDay
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All the research I've done has said that LDN is not nearly as effective when taken with immunosupressants. In fact the one LDN study that did NOT have good results was done in Ohio with MS patients who were still on their immunosuppressant drugs when they started LDN. It certainly seems like LDN has helped Sami even with the prednisone. Still, I would start counting the weeks now because she hasn't been given the chance to receive the full benefits until she got down to 10 mg pred. Wishing you well!
do you know does that include standard antihistamines? They are kind of an immunosuppressant, right?
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Dx'd w Leaky Gut Syndrome in 08. Had eczema(autoimmune), chronic fatigue, asthma and suspected crohns(booked for an endoscopy).

Been on cyclosporine, currently on vit d3, zinc, probiotic, digestive enzymes, getting iv drips of vit C, B complex, folic acid, niacin and EDTA twice weekly and living on an all poultry diet. WANT CARBS
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