Give up on LDN?

[Nims22]

How do you know when to give up on LDN? I'm just starting my 3rd month. I began at 4.5mg. Aside from not sleeping the first night, I've had zero bad side effects. I started flaring before I started taking it and I'm still very sick. I feel almost worse than ever lately. I don't have candida. I've had zero relief. I actually haven't had 24 hours of feeling ok since before I began taking it. I wanted it to work so badly... I'm willing to take it for however long it may take because it hasn't inconvenienced me in any way.. But when can you know for sure it isn't working for you?

Also should mention I get it from Irmat Pharmacy because I live in NYC. It's supposed to be one of the most reliable.

 

[nogutsnoglory]

Well you don't have to stop it if you have faith in it but I'd augment with a tested drug to get you in to remission.

 

[Nims22]

I was on prednisone for a week to try to get the flare under control and then switched to Uceris (I have crohns mostly in my large intestine) because the prednisone worked great, but raised my BP dangerously high. I don't know if I'm going to have to eventually switch to something more aggressive like Humira. I've never had remission, but I had a mix of good and bad days... Sometimes a few good days in a row... But I'm almost as bad as I was prior to being diagnosed.

 

[nogutsnoglory]

If uceris doesn't work maybe apriso can help? You can also try one of the biologics for strongest effect.

 

[SnoozE]

maybe try 3mg?

 

[HelenMelb]

So you have just started your 3rd month? Most of the LDN studies suggest 12 weeks as a minimum before you see results. We have used LDN for Crohn's and it was probably at the 4 month mark that we saw small improvements, which then continued over the next 6 months. Currently it has been almost a year and still doing well, thankfully. Wishing you good results soon.

 

[Nims22]

Thanks -- I'm going to keep using it... I'll give it at least 6 months. I'm also on Pentasa and Uceris right now.

 

[amber_griffin]

Have you tried Diet Changes in conjunction with the LDN? My husband to have found that combination extremly helpful. He's completely gluten free and eats as little processed food as possible.

 

[Robrich]

For LDN to work you need to avoid certain drugs esp immune suppressing ones. Pred and budesonide have immune suppressing properties in larger amounts. LDN says max 10 mg pred or 3mg budesonide. Biologics and thiopurines are definitely out
Here's a partial list
Because LDN stimulates the immune system and many of the drugs routinely used by the NHS in the treatment of MS [and other autoimmune conditions] further suppress the immune system, LDN cannot be used in company with steroids, beta interferon, methotrexate, azathioprine or mitozantrone or any other immune suppressant drug. If there is any doubt, please submit [to your doctor] a full list of the drugs you are presently taking so that their compatibility may be assessed.

https://sites.google.com/site/dudleyslowdosenaltrexonesites/home/drugs-to-avoid-on-ldn

It is also advised that diet be used to help the process, SCD or similar is recommended. You could even go elemental
If you want LDN or any other therapy alternative or mainstream you need to give it all the help you can. It seems rarely does anything work in isolation but mostly in conjunction with other healthy activities.
Good luck

 

[David]

How long have you been on the Pentasa? Did your symptoms improve or get worse when you began taking it?

Also, have you been checked for c.dff?