Who's tried LDN, and what are your results? PART III

Talked to skips and they said you couldn't be on predsone and take ldn. Are others doing that? From what I understand 4.5 is the max doage of ldn and also it needs to be taken right before bedtime.

Yes absolutely. Many have started LDN while on their regular meds, even the some of the biologics, and when they start to improve, then they are able to wean themselves slowly off these and continue with the LDN.

hi folks :) is this thread still active?

i am almost 36 and am starting my THIRD flare up and treatment of a more severe ulcerative colitis... here is my history:

i was dx in 2003 with UC in the lower 8 inches of my colon and went on Prednisone, i can't remember the dosage or routine, just the moonface and weightgain! at that time i also took some form of mesalamine, possibly pills and suppositories and went into remission awhile after that... i'm a little fuzzy on the exact details of that treatment...

after we got the first episode under control i had minor flare ups but essentially went into remission until 2008 when i'm pretty sure i had stopped taking meds and had also increased my stress levels by going back to school online... at that time i went on Entocort, Asacol 9x/day, and enemas 3x/day, yikes! i hated the enemas and couldn't stick to the routine so i opted for Canasa suppositories instead, much better! with that routine i went into remission and had been symptom free until october of 2011...

just prior to october of 2011, i had radically changed my diet, juicing, eating organic whole foods, cutting out dairy products, significantly lowering processed sugars and processed foods... i was down to my Asacol pills 1 or 2x/day and thought i would go off completely since i had been symptom free and thought the diet could control the colitis...

but in october 2011 i found lumps under my skin in my upper right thigh, very midline at the join of my pelvic area and leg... i went into see a surgeon, got a CT scan, and we thought it might be a cyst... the lumps became VERY painful over the weeks and by january fluid had broken through my skin and i needed to go in for surgery... it turned out to be a fistula which had formed scar tissue out towards my thigh and had gotten infected... the surgery removed the infected scar tissue and i began the 6 week process of healing "from the inside out" which was very physically and emotionally challenging... up through week 4 i had no other UC symptoms...

until week 5... i found a new location (close to my incision) with lumps and pains, and new fluids which were coming from the general are of my original fistula and the healing incision... i went in to my surgeon and he confirmed the new source of pain was too far from the incision to be an infection of that incision... a day or so later i started seeing very loose stools with blood present and "liquid gas" episodes... i went to see my GI, and he called for a blood test and stool sample, and scheduled an immediate colonoscopy...

the colonoscopy was yesterday 3/7, i do indeed have a second fistula that has channeled thru the original scar tissue and has already broken the skin surface, and have been dx with a more severe case of fistula-forming UC... so my GI doctor has put me on Prednisone, 40mg/day for 10 days then the start of decreasing the dosage over the next cpl months... also, i am taking Apriso ER 0.375g (mesalamine) 4x/dy for 30dys... also, Ciprofloxacin 500mg (antibiotic) 2x/dy for 3wks... and also Metronidazole 250mg (antibiotic) 3x/dy for 10dys... yikes! that is FIFTEEN pills a day for the first 10 days and only lowering a little at a time as the weeks go on...

ALSO, my GI wants to put me on 6-MP during this intitial drug program and afterwards to be on ONLY the 6-MP... it should help to heal and prevent the fistulas from forming and keep the UC in remission... i just today did the 6-MP Prometheus blood draw to see if i can metabolize the 6-MP drug properly... i will find out in 10 days... but my research on the 6-MP drug revealed that it is used as a chemotherapy drug which is definitely troubling me as far as side effects and results...

a friend of mine is also researching the LDN treatments for psoriasis and enlightened me of its benefits for UC which is how i landed here :) i have read through all of the posts from the previous archived threads and can see how LDN and diet and probiotics/supplements and the like have all helped or affected you :)

i am wondering if any of you had also taken the 6-MP and what it was like? did you take it WITH the LDN, INSTEAD of the LDN? PRIOR to LDN? and if any of you had developed fistulas and/or had their UC grow more severe to include formation of fistulas... any and all info and advice would be helpful :) i plan to bring my research on LDN to my GI and hope that he is open to it, however my main concern is healing the fistulas and keeping them from constantly forming... thanks again for reading, being my first post, i know it was a lot :) xoxo

hi InSoFla :) thank you for your welcome and reply :)

yes! :/ it is strange to have fistulas with UC and not be dx with Crohns, but my ulcers have always been within the last 8 inches of my colon marking it as UC, go figure! but i don't envy sufferers of Crohns in the least! :(

and thank you so much for posting the links to research and contacts in your reply :):) i won't have to hunt thru the thread to find them :) i'll be doing more research, as much as i can, and holding off the 6-MP as long as i can, haven't gotten the metabolizing gene bloodwork back yet, in order to determine the best solution... if it weren't for these fistulas i'd be golden! :)

and oddly enough, on day 4 today of my prednisone, antibiotics, and apriso... i actually feel ok... no insomnia or crazy energy... no weight gain or moonface (yet... i'm waiting for day 10...) and no joint pain... hopefully this will be smoother than i anticipated...

although... the blood and soft stools haven't cleared up yet, nor has my second fistula healed, and some urgency remains... hopefully i don't have to increase the prednisone to 60mg to kick this out :/

back with more later :) thanks!! xoxo

Hopeful4uc said...

Hi- I'm back!  Well, LDN is still working, but I definetely got lazy, lazy about the foods that do not agree with me; and instantly brings me into a flare.  However the LDN is working round the clock and heals the inflammation only takes about 2-3 days and then things are good.  My weight is good, but I need to realize and accept that I can not eat pork, popcorn, too many sweets, limit my milk, limit eggs, and limit fresh uncooked vegetables.  

So, I need to get some help in finding good "colon" friendly snacks that I can take to the movies, and snack at work/home.  Does anyone have any ideas? 

Hello Hopeful4uc

How are you doing these days, I like you had worsening of the symptoms of UC when i went on the LDN.  My liq D increased, and i didnt have any vivid dreams.  My pills were 4.5 LDN with a lactose filler, do you know if i should switch dosages or filler?

thank you

ubereem,

The worsening of your symptoms, especially the D reaction, is most probably that you are intolerant of the filler. I had the same reaction to the avicel filler (among other allergic reaction to avicel: terrible headaches, stomach aches).

The best filler to take is you are on the oral pills is hypo-allergenic which would be sucrose.

But you may also be having a simple problem of absorption. I wasted 5 weeks of my time on the sucrose oral LDN pills, until I realized it wasn't helping because I wasn't able to absorb it. As you probably know, many UCers and Crohns patients have major problems with absorption of nutrients and pills as well.

Gonk

Congrats!........what kind of LDN? pills or cream? and if its the pills what was the filler, and where did you get it from?

thanks!

Gonk,

Glad you are getting some positive results.
Keep us apprised.

Übereem,

Sorry for the late reply, I just saw your query.
There are several places to apply the transdermal LDN: top of hands, top of the feet, the back of the forearms - the area adjacent to the wrists - as you can see these are all areas where the skin is thin and the veins are prominent. I highly recommend you alternate out the areas, I.e. one night top of right hand, second night top of left hand, 3rd night top of right foot, 4th night top of left foot....you get the idea.

Itis important to apply it anywhere between 10pm and 2 am. Once you apply the specified demarcated dosage, you rub it in until it disappears and then let it air dry for 10 minutes, you can always wash it off in the morning.

Feel free to email me with any questions you might have, I will be glad to help you, here's my email: [email protected].

Please stay in touch and let me know how you do.

Übereem,

You're welcome.
Btw, what dosage are you taking? Hopefully 4.5mg?

I forgot to mention a few other things. Some people get very VIVID dreams from LDN. So itis therefore very important you pay close attention to your environment prior to taking LDN. What I mean by that is that a few hours prior to taking LDN, your exposure to visual, auditory, all sensory experiences should be pleasant and relaxing - pleasant reading, watching comedic or non-violent shows, etc.... And that will help you ensure calming, nice, vivid dreaming (if you indeed have those) versus spending the few hours prior to taking LDN watching horror movies or reading a thriller ( even if that's something you would normally love to do) as that would set you up for nightmarish vivid dreams the likes of which would be quite unpleasant.

However, do not be disappointed if you are one of those who do not get those vivid dreams, not everyone does.

Let me know how it goes.

ubereem,

I hope the LDN starts working for you.
When I used it, I noticed a difference at day 3, and then at day 7 - it was magical!

Please keep us apprised of your progress.

I answered your post on the other thread and hope it will help answer your questions.

Let me know if and how I can help you.

I have read that if the LDN starts to become ineffective you can essentially jump start it by going off of it for a week or to and then start up again.