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Is this supposed to happen?

E

Eric

So I started taking LDN on march 25 and my symptoms started to subside a little, and then yesterday out of no where my symptoms get worse. I was wondering if this happened to you while on LDN because I am a bit worried. They might of also gotten worse because I am tapering myself of Prednisone, but I am not sure. Any information that might put my mind at ease would be appreciated, thank you.

Eric
 
D

Dekar

I haven't taken LDN yet. But i've taken Pred, and when I would taper off Pred, symptoms would always come back. There was definitely a fine point where (for example) 5 mg less of pred would bring back Crohns as i was tapering.
 
A

Aussie Lea

I have not had any recurrence due to taken LDN, I have definitely had recurrences of symptoms when tapering especially 5 mg or less. It took me several years (before LDN) to be able to taper from 10mg to 5mg. I am still on 5mg prednisolone, even though I am in remission. I want to feel good for at least a year before I starting the tapering off from 5mg.
Lea
 
crushingcrohns

crushingcrohns

I was prednisone dependent for a long time. Alwaysgetting bad symptoms when getting to about 15mg and i would have to boost up to a higher dose again. My bones have been effected by prednisone and it's just a drug you DO NOT want to stay on for long-term treatment.

For people taking LDN, does naltrexone come in 1mg or low dose tablets? Do you have to use a compounding pharmacy?
 
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Aussie Lea

I was/am prednisolone dependent too, everytime I tried to go under 10mg, symptoms returned. I managed to get down to 5mg using the 1mg tablets, I have been on 5mg for a long time now. However I am giving myself 1 year of feeling good, which is about November 2011 and will start to reduce from 5mg very slowly.

I get the 50mg Naltrexone tablets and dissolve in 50ml of water.
 
crushingcrohns

crushingcrohns

Aussie Lea.. you sound too much like me :)

I have been on 5mg forever too. Just because it's not a harmful dose and my disease is so unpredictable and I DO NOT want another flare.
I also have 50mg tablets. You dissolve the 50mg tab in 50ml of distilled water ? Let me ask you, what do you store the liquid in so that it stays fresh and doesn't lose it's potency? I just want to do it correctly...

My goodness i'm letting the clueless and knowledgeable people get to me (the family). I know they dont know anything like what I do so I need to not stress. I'm better off not mentioning anything to them because they just add stress & fear to my mind. They need to just disappear and spare the ignorant suggestions! Sorry I just vented on you... SORRY.
 
A

Aussie Lea

I am on 5mg for exactly the same reason, plus my personal life has had some tough times (family - not me) over the last couple of years, there has not been a "good" time either.

I bought a "baby feeding bottle" from the pharmacy, sterilized with boiling hot water and use this to store the 50ml in the fridge. I am pretty sure you can get 1mg compounded tablets. I will find a link for a compounding pharmacist in the US. I can't go to a compounding pharmacist, as I buy my online.

My experience with family is that are just a bit too concerned, just remind yourself, if you take that low dose with or with out crohns it will not hurt you. I believe taking panadol or aspirin daily is much worse. :)

take care and best of health
 
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