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Started LDN week and a half ago - when do I start healing?

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Ulcerative Colitis
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Posted 6/29/2011 7:34 PM (GMT 0)
This is more of a follow up and some questions for LDN. As you know I stopped using Armour for my thyroid and I am now on synthroid and doing much better. UC has for the most part stopped all bleeding in the last couple of weeks.

I finally found a Dr that would prescribe LDN. I've been using the transdermal version and have had the weird dreams but aside from that I'm waiting to feel different and just want to ask what others started feeling when they first started to feel better? Will this take longer than 2 weeks to see results?

Also, seems as though my bm start around 3am and don't stop until around 6 - 6:30am. Tired, frustrated and ready for this to end and be healed.

Thanks for your response.

Scott
Posted 6/29/2011 7:44 PM (GMT 0)
It's taken me about 35 days on LDN to finally start feeling better...
Posted 6/29/2011 8:04 PM (GMT 0)
Eph,
What were your first signs that it was actually starting to work?

Also, do you get re-active arthritis? My legs, feet and back kill.

Thanks,

Scott
Posted 6/30/2011 1:09 PM (GMT 0)
SparksUC,

Glad your doc prescribed LDN for you.

Everyone's different in response time. For some it may take 1-2 weeks, for others a few months, it really depends on your body and how much "work" the LDN has to do.

But I can tell you that you will get better and faster results if you are on the SCD diet (specific carbohydrate diet), I don't know why, but it just seems so. Actually, it's probably because the things you are cutting out stress your gut so much that it prevents it from functioning properly, so when you cut out those things, it enables LDN to work better.

SCD is tough to do though. Maybe start cutting out dairy and wheat and see if that brings you more relief and better results?

As far the reactive arthritis, how long have you had that? It often comes with UC. And as Red informed me, it might actually be called Peripheral Arthritis.

Hope you start seeing improvement soon. Good luck.

Keep us apprised.

Posted 7/1/2011 2:17 PM (GMT 0)
InSoFla,

thanks for your comment. Yes I'm on the scd diet. I'm finding the aches and pains are from coming off of predizone. So the Dr is going to give me lower dosage rather than the 10mg's so I can come off easier.

My biggest issue right this minute is the frequency of how many times I have to go to the bathroom all day. Especially at night. I mean I get no sleep what so ever. Last night it started at 11pm and didn't stop. Up every hour

I'm at a loss and completely don't know what to do.

Please help.

Scott
Posted 7/1/2011 6:05 PM (GMT 0)
SparksUC,

It's good that you are on SCD.

Are you taking anything else, any supplements?

What time are you taking the LDN? Ideally you should be taking it 10pm - 2am range.

Are you on any rectal meds? Perhaps until the LDN kicks in, they could help in terms of urgency/frequency and going all night, Canasa suppositories or enemas?


 

Posted 7/1/2011 8:30 PM (GMT 0)
yes I'm taking k2 and d3 vitamins. I tried the rectal canasa but they irratated me so I quit. I guess I could start them again. I have the transdermal LDN and I do it at 10pm. I try and go to bed about an hour after but my gut starts to grumble and then I have to get up and go. Then rather than wake wifey up I try and sleep out in my chair because once it starts then I get up just about every hour. Not a whole lot comes out and that is what is frustrating...I look in the toilet and think I'm losing sleep for that? WTH. So I'm willing to try anything to get some sleep. I seriously haven't slept in months.

Thanks again.

ss
Posted 7/1/2011 9:07 PM (GMT 0)
Hey Scott,
Welcome to the LDN club! It takes some time for it to have results. Jill Smith's studies showed result sin 3 months. I've been taking the Transdermal since April 22 and along with the Prednisone which seem to be helping. I won't know for sure until after I start tapering of the Prednisone.

What dose are you taking? The max is 4.5mg and you normally work up to that amount to ease the side effects. I still get up around 3:30pm too to get rid of some mucous and blood...but it becoming less and less. Also what other medications are you on? There's been some contradictions whether you can take LDN with immusuppresants drugs such as 6MP, Imuran, Remicade...so be cautious when mixing drugs.

I wish you luck!
Posted 7/1/2011 10:34 PM (GMT 0)
Peace,

Thanks so much for your response.

I'm on 4.0mg LDN. I don't know if I have experienced any side effects other than the dreams. Are there others I'm not aware of?

I'm trying to get off predisone completely as I'm not inflammed anymore I think? I still have a little blood every once in a while but there are so many side effects of the predi that I'm sick of taking it. I want the LDN to work fulling with out predi.

Right now I'm having a hard time getting off the stuff. I suggest you tapper down slowly or you will have bad aches and pains as I did. Even the dr said to go down to 10mg's for 10 days then stop my body wouldn't allow for that and I started running a fever and was very sick. Took a few days after starting back on it to get me back to life. Gosh this stuff is horrible!

I just need some sleep and my wife said the dr just prescribed some lamodal to see if that can get me through the night.

I will keep my fingers crossed.

thanks and have a great 4th!

Scott
Posted 7/2/2011 2:03 AM (GMT 0)
SparksUC,

k2 and d3 - that's great!

What time are you eating your dinner? Could it be you need to leave more time before going to bed i.e. 4-5 hours after your dinner?

Is it possible you're having side effects that are lingering from the Prednisone?

As far as LDN, especially Transdermal LDN, the only side effect would be: vivid dreaming.

And initially you could also get some sort of cold/flu symptoms, but nothing else.

So, I don't really understand why you are having these problems.

You definitely need some sleep, and plenty of it.

I hope you get a good night's sleep tonight.

Let me know how you do tomorrow. I'll keep my fingers crossed for you.

Posted 7/11/2011 11:50 AM (GMT 0)
SparksUC,

Just checking in with you, how are you doing?

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