4 months of LDN but not sure it's working

[megawatt]

Hi All
I'm looking for a bit of advice really as I know there's more experience on this board with LDN and Crohn's than anywhere else.
My wife has had crohn's for the last 8 years - mainly managed through 5-10 mg of prednisolone as she's had reactions with most of the usual drugs, Aza, 6mp, Remicade etc.
Anyway, as she started having some small flares at the beginning of the year her GI wanted her to go on Humira - we resisted and asked instead for LDN. Luckily for us another of his patients had recently started using LDN and was doing quite well so he agreed.
So my wife started at 1mg about 4 months ago slowly building up. She couldn't take it at night as it caused too many sleep issues so takes it in the morning instead. When she started things were looking good as typically she'll have 4-5 bm's a day - this reduced down to 3-4 and seemed a bit more formed. We were hopeful.
At 3 mg of LDN she had a colonoscopy which showed mild to moderate inflammation throughout the colon and now the ileum and small bowel - previously all her colonoscopies showed inflammation only in the large bowel so this was disappointing.
She's now at a dose of 4mg of LDN (which she's been on for 10 days) and has recently reduced the pred down to 5mg (that's been about 10 days too) and today she's experiencing D, blood etc.
We're not really sure if this is because she has come down on the pred - or because she's gone up on the LDN. Not convinced if the LDN is actually working or maybe it is as I've heard some people get worse before they get better. She's going to reduce on the LDN back to 3.5 mg again and also step back up to 10 mg on the pred just to try and avert a full flare. I know she's been on LDN for 4 months now but as she's only been building up the dose should we really count this period - like I say she's on been on 3.5 - 4mg for the past few weeks.
Also - could it be that this episode with the D is a good thing as maybe the LDN is now at a level where it's working. Or shall we just pack it in and go for the humira?
She's also been taking high doses of VSL#3/Primal Defense/Colostrum and has eliminated wheat and dairy products from her diet.
Many thanks, Mike

 

[D Bergy]

I don't really think you can get a good assessment of the effectiveness of LDN until it is used without Pred and at a full dose for some time.

I am not sure what you mean by "high doses" of VSL#3 Primal Defense/Colostrum.
VSL is pretty potent at a normal dose. Is the Primal Defense/colostrum one product?

I did very poorly on Primal Defense Probiotic. Something in it gave me the big D whenever I tried to use it.

Dan

 

[megawatt]

Hi Dan - thanks for your reply.

So maybe it's not a good idea to go back up on the Pred?

She's on 3 sachets of VSL#3 a day (I think that works out at approx 1300 billion good bacteria) and 4 x Primal Defense. We thought this might counteract any candida problems and they both seemed to help when first taken.

The Colostrum is a separate product but she's taken this for years - this again has always been quite helpful

 

[D Bergy]

I wouldn't hazzard a guess on whether Pred should be increased or not. I have been hooked on Pred before, and could not get off of it because of increases in pain. Turned out it was a serious infection, but the point is I do not have the training or the info to guess on that one.

I do not know the theory behind using both at the same time, but it is done that way sometimes. They work kind of opposite of each other so how can you tell which is helping or not when both are used at the same time? It would seem to me as a layman that one would counteract the other, but it is possible that different mechanisms are involved.

LDN ramps up the immune system, which allows the body to address infections and hopefully get rid of them when the body could not before. Prednisone and the related versions suppress the immune system, preventing the immune system from responding to the pathogen or pathogens that are causing the problems. They both can alleviate the symptoms by using two distinctly opposite methods.

I just don't think you can know which is working or not, when both are used at the same time. I really do not know which way you should go, but until one or the other is discontinued, you really cannot know either way.

I hope you can get something working, either way. It sounds like the options are getting more limited.

I would take the recommended amount of VSL#3 whatever that is. I would consider not using the Primal Defense product as it contains soil organisms that may or may not be beneficial. I am only going by my experience on that one, but it is the only probiotic that has caused me problems in the past.

Dan