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So excited that i'm about to start on LDN.

Location
Ireland
My journey so far, on LDN.

I have just been for my first appointment to the Breakspear clinic in London. They seemed to know what they were talking about. I had a consultation, had bloods taken and some other tests.

I asked specifically about LDN because from the research i have been doing, it seems to be the most effective/least side effects drug around for autoimmune conditions.

The doc who i saw agreed right away to put me on it :D. It will be posted to me, here in Ireland within the next few days and i'll keep you all updated on my progress if you guys are interested.

Thanks for your help, and for being the place i found out about LDN.
-Jude.
 
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Tesscorm

Moderator
Staff member
Good luck Jude!!! I really hope you get positive results from the LDN!

I'm certainly interested and will watch for your updates.

Good luck again!
 
Location
Ireland
Ok, i'm 6 days into taking LDN, i went through a flare and although both me and the GI that i'm dealing with are reluctant to use Pred. we decided it would be best to do a 5 day course at 25mg/day followed by a course of Nalcrom (I think this is to stop me from reacting to so many foods).

Can anyone offer advice on the use of Pred along with LDN? Anything i should know? It's my first time taking Pred.
 
Location
Ireland
Hey, everyone. It might be a bit early to report on how the LDN is going, but w/e. I just finished the first months script (3mg) a few days ago. I've been on 4.5 mg for 5 days now. Honestly, haven't noticed anything positive. :(. Like I said, it might be too early to expect any results, but I was hoping for some tbh.

Fingers crossed it's going to benefit me at some point :).
 
Location
Ohio
Don't get discouraged! It took a month for Chloe to start to see improvement and we still hit rough patches now and then. Overall her blood work is good now and I'm positive LDN is keeping it that way. What supplements or other drugs are you taking right now?
 
Location
Ireland
Don't get discouraged! It took a month for Chloe to start to see improvement and we still hit rough patches now and then. Overall her blood work is good now and I'm positive LDN is keeping it that way. What supplements or other drugs are you taking right now?
Thanks for the reassurance. I'm only taking anti-histamines and nalcrom to try to combat the horrible itch and soreness in my skin. I am about to start a week-long course of Budenoside (Entocort), though, (Pred did NOT work), to try to get the flare under control.
 
Location
Ohio
I'm sorry you're not doing so great right now. According to the research I've done you may not see the full effectiveness of LDN while taking steroids. There seem to be conflicting opinions on that though. I've combed through all the threads on here looking for additional things that would help Chloe and I've found so much. Have you had your doc check your vitamin d3 levels and b12 levels? Chloe takes d3 supplements and a b 12 shot. We also take fish oil and Garden of Life probiotics. Please hang in there and keep us updated.
 
Location
Ireland
I'm sorry you're not doing so great right now. According to the research I've done you may not see the full effectiveness of LDN while taking steroids. There seem to be conflicting opinions on that though. I've combed through all the threads on here looking for additional things that would help Chloe and I've found so much. Have you had your doc check your vitamin d3 levels and b12 levels? Chloe takes d3 supplements and a b 12 shot. We also take fish oil and Garden of Life probiotics. Please hang in there and keep us updated.
I take 6000 IU of VitD3/day. I get a Bvit complex intravenously monthly. I take omega oils and Multi-chain tryglicerides too.

Boy, I hope the Entocort doesn't impede the LDN but i'm only taking it for 1 week anyway, so hopefully it'll do it's job.
 

Kev

Senior Member
I believe (but can't point to anything in writing) that LDN can be used with other drugs. A member stated that they'd been in touch with Dr Smith about this. Even if the entocort (which I believe is just another form of cortical steroid, but I could be way off the mark) did interfere, it is only for a week. Now, I know that, in your particular mindset right now that a week is ... like forever (been there, each day waiting for my LDN eureka was soooo long I thought time was standing still) BUT, it really isn't. I have to pinch myself to grasp that it's been over 4 years... seriously. 4 years. It amazes me that much time has passed. All I can say is... keep the faith, think positive thoughts, behave yourself, and give LDN every possible chance to work. Even if it takes 3 months.
My reason? Well, when it does start to work, if your case goes like mine, life from then on can be sweet.
 
Location
Ireland
I'm not sure, and I don't want to get ahead of myself, but I think the LDN may be starting to work. I am noticing a lot more time where the itch, soreness, inflammation and general miserable feeling that has become such a regular feature in my life, is being reduced, particularly for a period of about 3-4 hours, half an hour or so after taking each capsule.

I am not sure if I should ramp up to 6mg/day from 4.5. I know my GI would let me if I asked. I just feel like 4.5mg is such a tiny amount to last 24 hours. Maybe it just needs more time to take full effect

Anyway, like I said, it might just be coincidental, and I don't want to jinx it, but i'm getting a little excited. Maybe the positive thinking will help :). Either way, i'll keep you all updated. Thanks for all the support. This forum is the best thing that's happened for me health-wise (physical and mental) in years.
 
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Tesscorm

Moderator
Staff member
I always watch for your updates! So, great to hear you may be seeing some results!:dance::headbang::dance:

I hope you just continue to see more and more!

Couldn't agree more re this site! :ybiggrin:
 

Kev

Senior Member
I've never heard of a 6mg dosage. I've heard/used 4.5 mg, and heard of 3.0 & 1.5 mg. I'm 6' 3", 245 lbs.... AND my disease was particularly nasty AND in full flare when I started. If 4.5 mg worked for me, it should work for you. If you feel (and you post indicates that) it is working, then don't rock the boat. Be patient, hang in there, and don't change a thing.
 
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