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Posted 11/2/2012 3:05 PM (GMT 0)
Hey! I'm new to HW, but I've read some posts about LDN and I was wondering how some of you were put on it?  My current GI is so against new treatment methods.  My doc is stuck in the mindset that only Remicade or Humara will work for me- despite the fact that I have a family history of lymphoma.  I've got a colonoscopy scheduled for the end of the month and I need to make a choice about a new med by then.  Currently I'm not on anything.  Just a few weeks ago I seemed to have a reaction to Apriso.  I've been on various meds with reactions to most- my body appears to be a bit sensitive to say the least. 

Anyways- I'd appreciate some advice as to bringing up LDN to my doc. 

Thanks all!

Posted 11/2/2012 3:11 PM (GMT 0)
I take a capsule every night at bedtime. If your GI doesn't want to prescribe, I recommend finding a new GI. I think it has helped me.
Posted 11/2/2012 3:44 PM (GMT 0)
There are many different ways to end a flare that have worked from antibiotics to fecal transplants. Hopefully LDN will work for you. You don't need a GI to prescribe it, any PCP will do. There are numerous threads here about finding one. There is a pharmacist in Florida famous for LDN information. There are some excellent research trials showing LDN to be an excellent tool against UC, but don't be surprised if your GI is unimpressed.

If for any reason LDN does not work for you, rectal meds are very effective (if you can tolerate any meds at all.) Like you I too am intolerant to most meds. But I found that diet and supplements work very well for maintaining remission for me. Specific diet and supplements are different for each of us, if they work at all. Check our signatures to see what we each find effective for ourselves.
Posted 11/2/2012 6:53 PM (GMT 0)
Take a look at the info on the various LDN-related websites (e.g. lowdosenaltrexone.org, ldnscience.org, LDN forums, etc.)
One of them contains recommended info to take to your doctor.
My GI prescribed it to me (at my request) because there are no dangerous side effects. I get it from Skip's Pharmacy in Boca Raton, FL.
I think you can get it from Naturopaths (NDs) and maybe from GPs particularly if they are computer literate. There are some good YouTube presentations.
http://www.youtube.com/watch?v=qq2CTon0tb8&feature=related
http://www.youtube.com/watch?v=xr-n8jMLenU&feature=youtube_gdata_player

IMO, it's worth a try before using many of the dangerous drugs available for autoimmune diseases.
I have friends who have used prednisone and/or immune suppressing drugs on a long term basis with dire results. One who has Rheumatoid Arthritis now appears to be "melting" from the inside. It's a horrible thing to see.
Posted 11/2/2012 8:37 PM (GMT 0)
GIgo,

Definitely try LDN. It works!

Here's my story on LDN:

Transdermal LDN (low dose naltrexone) put me in remission - Bottom line is it works!

 

For those of you considering LDN, or for those of you not familiar with LDN, I wanted to share my story:

 

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

Here's my story on LDN: I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10 (on scale of 1-10, 10 being the worst).

When I spoke with the compounding pharmacist, she mentioned that I may not be absorbing the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me a lot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too.

 

The THIRD day after I started the transdermal LDN, my bleeding went from a 10 to a 3. FOUR days after that ( full week on LDN), my bleeding STOPPED completely, after more than 1 1/2 years of continuous bleeding. Bottom line is it works!

 

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

 

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL. They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you. You can reach them at: 800-553-7429 www.skipspharmacy.com

 

Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:


www.ldninfo.org

www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org


and if you want to find what other patients have experienced when used LDN, choose UC, Or breast cancer, or Crohns Disease at:
www.ldndatabase.com

 

 

Hope this helps. And I hope to those of you on the fence about trying LDN, give yourselves a chance...

Please let me know how it works out for you.

Posted 11/9/2012 3:16 AM (GMT 0)
Haven't been on here in so long but here I am checking in!! LDN does work! I'm living proof. Feeling fantastic!
Posted 11/9/2012 1:16 PM (GMT 0)
Box,

So good to hear from you, and that you are doing so well! :-)

A big hug to you!

Posted 11/9/2012 7:01 PM (GMT 0)
Most Gis wont prescribe it, and most are closed-minded. You will have to get a list of prescribing Drs, pick one close to you and go that route.
Posted 11/9/2012 7:39 PM (GMT 0)
   GIgo_2much

awesome !

Posted 11/9/2012 11:26 PM (GMT 0)
Interesting, InSoFla, that you had such better results from transdermal.. Im on 4.5 capsule and it doesnt seem to help much, perhaps I need to try that. I did stop for a while and seemed to worsen a little..

Too bad I just bought 2 months worth of pills.
Posted 11/11/2012 4:01 PM (GMT 0)
Freddy,

As you may know, I first tried oral LDN with avicel filler which made me sick, then they switched me to sucrose filler, but my body couldn't absorb it and therefore it didn't work. I lost 5 weeks playing around with the correct type of LDN.

Then when I switched to transdermal LDN, within 3 days, I got pretty big results, at the 7th day mark: ZERO bleeding.

Do you know which filler is in your oral LDN?

Posted 11/11/2012 9:34 PM (GMT 0)
Should people try transdermal first?
Posted 11/11/2012 10:08 PM (GMT 0)
No, but I have a call in to the Dr about switching to transdermal just to see..
Posted 11/11/2012 11:55 PM (GMT 0)
Sibby, no, not necessarily. Some do well on oral LDN, but you have to make sure IMO to have it with sucrose filler only.

Freddy, I would be curious as to your filler.

 

Posted 11/12/2012 7:10 PM (GMT 0)
Thank you m'dear. I was curious. I know it's 50/50 with ldn. I'll try oral for the first few months and then fine tune it if needed.
Posted 12/17/2012 5:23 AM (GMT 0)
Hi-- can ItsAlwaysSomething or someone else share what the dosage/script is for the transdermal LDN? My doc wrote me a script for 4.5 mg/day orally, but it sounds like it might be better to try the transdermal right off. I'm not in remission and recently got back indeterminate for dysplasia biopsy results-- I'm trying my best to turn it around soon, before the next biopsies. Thanks much-- (I'm allergic to all 5-ASAs and do a variety of supplements, pro-biotics, budesonide enemas and just finished a round of xifacin)
Posted 12/17/2012 5:40 AM (GMT 0)
Well LDN doesn't work immediately.

Cost wise, it would be alright to go straight to 4.5mg, if you're willing to deal with the side effects.

Another option is to have LDN in liquid form, done at home. You can fine tune your dosage. I'm doing just that.
Posted 12/17/2012 7:36 AM (GMT 0)
Right. It doesn't work immediately; but what's the usual-- three months, a year, etc??

Why would 4.5 mean side effects (and what side effects)?

Also, how does one "have LDN in liquid form" and how is the fine tuned dosing done?

Thanks.
Posted 12/17/2012 10:45 AM (GMT 0)
How frequently do those that use LDN use the washroom when it starts working or after a certain period? Do you get the urgency at all?
Posted 12/17/2012 1:21 PM (GMT 0)
Shan and Dvoyre,

If you get the oral LDN, be careful of fillers, as many are problematic.

The only one I would recommend would be: sucrose also called hypo-allergenic.

The others are problematic for a variety of reasons, and I would hate to see you lose time trying LDN, and have it not be effective.

Since many of us, UCers and Crohns patients, have absorption issues, transdermal works better since it bypasses the gut entirely and gets absorbed by the skin.

Dosage can be varied: starting at 1.5mg for 2 weeks, then 3.0mg for 2 weeks, then the final dosage of 4.5mg. Some doctors prefer to start you off on the 4.5mg dosage.

As far as side effects, they are few and very minute IMO as compared to other meds. Some of these are: initial sleeping problems which could last several weeks until your body adjusts, as your immune system gets "geared up" it could result in getting some type of 24-48 hour flu-type symptoms (but this is only temporary and goes away quickly).

As to how quickly does it kick in?

That depends upon how strict your diet is, i.e. if you are gluten and dairy free, you may see results within 7-10 days. If you are not on that type of diet, it may take several months to see results. BTW, these are not my rules, but rather proven anecdotal observations and recommendations by the LDN specialists and researchers.

What can you expect?

Initially, a reduction in symptoms - all symptoms in their severity, until they are diminished entirely. And at the 6 months mark, many report MAJOR changes as in remission.

For me, because I was on the restricted gluten free and dairy free diet, it only took 3 days after starting transdermal LDN to see a major reduction in major bleeding, and at day 7 I stopped bleeding completely.

As to the making the liquid LDN yourself, email me and I will explain the info on that.

I hope I've answered your queries, and if not, please feel free to email me and I will.

 

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