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LDN has stopped blood and stopped severe flare

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Ulcerative Colitis
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Posted 7/7/2016 5:23 PM (GMT 0)
I was in severe flare and tried LDN and LDN seems to have stopped my blood fully.


People who are considering biologics or surgery should look at LDN as an option

Post Edited (st_uc) : 7/11/2016 8:29:20 AM (GMT-6)

Posted 7/7/2016 8:30 PM (GMT 0)
That is great news. It would be lovely if you can tell us some more about your UC. Is it pancolitis, mild/moderate/severe? I wish I could have gotten someone to prescribe LDN for me... doesn't seem like there is much harm in trying.
Posted 7/7/2016 8:47 PM (GMT 0)
Severe Crohns. Initially as UC and later as crohns.
Posted 7/7/2016 11:00 PM (GMT 0)
Good for you. Yes tell more about what dose, how often, etc. I tried the cream way back when people were actively talking about it several years ago on this forum and saw no real improvement. Other people have but left the forum never heard from again.

I did get some weird dreams from it though, not disturbing just more colorful and wilder than normal.

Post Edited (imagardener2) : 7/7/2016 8:49:39 PM (GMT-6)

Posted 7/7/2016 11:40 PM (GMT 0)
3mg pill at night time once a day,



LDN surely works. People should try it out certainly.
Posted 7/8/2016 12:44 AM (GMT 0)
I need to check into this
Posted 7/8/2016 2:39 AM (GMT 0)
Adult dose is typically 4.5MG
Posted 7/8/2016 11:03 AM (GMT 0)
That's awesome!
Posted 7/8/2016 1:01 PM (GMT 0)
Please considering biologics or surgery should have a relook at LDN. It may not work for every one (Even Remicade does not work for everyone) but is worth trying it considering very low side effects from it.
Posted 7/8/2016 3:10 PM (GMT 0)
Please peeps use the resources posted at the top of the forum.

As to LDN please see InSoFla's story which is included in resources

https://www.healingwell.com/community/default.aspx?f=38&m=2339658

I tried LDN, but should have tried a lower dose. At 4.5 daily I was having terrible nightmares and loss of appetite.
Posted 7/8/2016 4:00 PM (GMT 0)
You may want to start at 1 mg or 1.5 mg and work your way up.
Posted 7/8/2016 4:28 PM (GMT 0)
Glad the blood stopped, have you fully exited your flare? How's your current symptoms? How long have you been on LDN?

LDN is one of tons of alternative treatments available. I know some have found relief from it, like notably InSoFla, but it's not widely used. Partly because LDN isn't an FDA approved treatment for uc, so one can't simply ask and expect every gastroenterologist to be ready and eager to prescribe it, or for their insurance to automatically cover it. I believe LDN is made by a componding pharmacy (not a simple riteaid, walgreens pharmacy pickup). More hoops, more obstacles but something to consider within that context for those who want to "think outside of the box", so to speak.

If it works for you then that's great, that's what really matters. Hopefully it continues to be a long term solution for managing your uc. We're all quite excited when we find something that gives us relief, as uc symptoms are simply horrible.
Posted 7/8/2016 4:58 PM (GMT 0)
Current symptoms are no blood , once or twice a day well formed stools and no pain.


I have my primary care doctor prescribing LDN and not my GI. Using Skips Pharmacy to compound it.

LDN can be very easily made at home too as a DIY.


The procedure is get 50 mg naltrexone tablets . This will cost 20$ entire year.

1> Take 50 ml of distilled water and put 50 mg naltrexone table. Naltrexone will dissolve in 2 hours
2> Take 4.5 ml of this water (that is equal to 4.5 mg of LDN)

Store rest of the solution in a refrigerator

It is as simple as this.
Posted 7/8/2016 5:20 PM (GMT 0)
I asked my GI about trying LDN and she basically said she would only consider it if there were significant studies done supporting it. The only studies out there I found were small samples so not enough to satisfy her. So she wouldn't prescribe it.

I didn't think about asking my primary care to prescribe it. Maybe I'll give that a shot! Even though I see her less frequently (annually) I always get the feeling she cares about my well being more than my GI who rushes me through appointments. At my last appointment my GI thought I was a new patient even though I've been seeing her since 2012. :-/ I know they're busy and see tons of people but come on....
Posted 7/8/2016 5:53 PM (GMT 0)
Prescribing doctors can be found here.

http://www.ldnresearchtrust.org/LDN_Prescribing_Doctors

Post Edited (st_uc) : 7/11/2016 10:13:35 AM (GMT-6)

Posted 7/8/2016 6:23 PM (GMT 0)
Anecdotally, a few success stories are nice.

However, the studies are very lacking for LDN. Only a couple studies, small sample sizes, and one was even open label . It's hard to say the success rate or side effects with a whole lot of certainty due to those study limitations. More study needed before meaningful clinical data can really be drawn from it all.
Posted 7/8/2016 6:42 PM (GMT 0)
iPoop - I agree, the studies aren't there, and it's sad considering how long LDN has been around as a possible anti-inflammatory. I think the reason for lack of studies is the money isn't there. The drug is so cheap it isn't worth it to drug companies to fund any studies, they can't turn around and market it for a profit...

That being said - it's such a safe drug to try at such a low dose compared to the other garbage (prednisone) I'm putting in my body... I don't see the harm in doctors letting people try it even based on anecdotal evidence and limited studies.
Posted 7/8/2016 7:06 PM (GMT 0)
In my opinion, what is preventing in trying stuff like FMT and LDN when you are facing surgery. I think key is there is no money involved here and no pharmaceutical company will do a multi center trial.
Posted 7/8/2016 7:46 PM (GMT 0)
I use a compounding pharmacy for bioidentical hormone replacement (gee, thanks prednisone!) and they had books out about LDN. I asked them about it and they fill LDN prescriptions - they also gave me a list of local doctors that prescribe it. I am keeping it in case I need it at some point - but if you want to find someone locally, it would be worth calling your local compounding pharmacy to see who writes it.

I agree that the risk is less than it is with many other treatments - I would definitely give it a try!
Posted 7/8/2016 8:05 PM (GMT 0)

iPoop said...
I believe LDN is made by a componding pharmacy (not a simple riteaid, walgreens pharmacy pickup). More hoops, more obstacles but something to consider within that context for those who want to "think outside of the box", so to speak.

Not all the time, thankfully. Homemade LDN is the cheapest solution, which I use. I hope there are more studies of it, though.
Posted 7/8/2016 8:07 PM (GMT 0)
That is awesome news!!
B
Posted 7/8/2016 10:11 PM (GMT 0)

Sibby said...

iPoop said...
I believe LDN is made by a componding pharmacy (not a simple riteaid, walgreens pharmacy pickup). More hoops, more obstacles but something to consider within that context for those who want to "think outside of the box", so to speak.

Not all the time, thankfully. Homemade LDN is the cheapest solution, which I use. I hope there are more studies of it, though.

DO you use LDN? If so what is your dose ?
Posted 7/8/2016 11:49 PM (GMT 0)

CGK1998 said...
if you want to find someone locally, it would be worth calling your local compounding pharmacy to see who writes it.

Brilliant idea. Why didn't I think of that?!
Posted 7/9/2016 2:07 AM (GMT 0)
I'm interested in it too! It's definitely on my radar.
Posted 7/9/2016 3:54 AM (GMT 0)
Most doctors use Skips or Belmar. Local compounding pharmacy may know some of the doctors but these two pharmacies handles most of the prescription. Following list has local compounding pharmacy and doctor information.


http://www.ldnresearchtrust.org/LDN_Pharmacists

http://www.ldnresearchtrust.org/LDN_Prescribing_Doctors
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