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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Hi, to the people who have took LDN..


11-20-2014, 10:16 PM   #1
GeorgeMc
 
Join Date: Nov 2014
Location: Easton, Pennsylvania
Hi, to the people who have took LDN..

I've recently had a colonoscopy done, and it seems my Crohn's is back. He said I have moderate to serve and wants to start me on Remicade. I've been feeling down about it all day. I was diagnosed with Crohn's in June 2010 after having several blockages (which are horrible) and I'm scared it's going to start up again. I had a bowl resection in December of that year and have been fine since today. I had one fistula since my diagnosis and still have it, but I've gotten alot more recently. Of course I ran home and started doing research on Remicade and the side effects are scaring me. I'm on Pentasa 500mg twice a day now, and I've took Humira in the past but stopped it because it was giving me headaches and bad vision. I'm wondering if the Remicade will do the same? I came across a study on treatments for Crohn's and found out about LDN and was wondering if I should ask my Doctor about it? It has far less side effects than Remicade and I looks like it helps alot more people. I'd appreciate any information you can give me?
11-20-2014, 10:23 PM   #2
DJW
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Hi and welcome.

I think it's worth talking to the doctor about. I've never been on LDN. In September I started Remicade.
I've had lots of complications with my crohns because non of the meds on the market at the time worked.

I'd do anything to avoid those issues again (fistulas, blockages, severe pain, abscesses, etc.). Remicade was a no brained for me.

Sending you my support.
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11-20-2014, 10:28 PM   #3
GeorgeMc
 
Join Date: Nov 2014
Location: Easton, Pennsylvania
Hi and welcome.

I think it's worth talking to the doctor about. I've never been on LDN. In September I started Remicade.
I've had lots of complications with my crohns because non of the meds on the market at the time worked.

I'd do anything to avoid those issues again (fistulas, blockages, severe pain, abscesses, etc.). Remicade was a no brained for me.

Sending you my support.
Thanks, has the Remicade helped you? He wants to something about the fistulas because I've been getting alot more (draining pus and bleeding) I have about three.
11-20-2014, 10:34 PM   #4
DJW
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It has started to help. I've only had my 3 loading doses.

My inflammation markers (CRP & ESR?) are down. I've battled open ulcers under my stoma wafer for over a year and they are healing. Still hoping my energy improves.
11-21-2014, 10:53 AM   #5
Clash
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The treatment choice is yours and though LDN isn't mainstream a discussion with your GI would allow you to hear his views on it, as well.

I would caution, thought that it can take LDN quite some time to see benefits and with you acquiring new fistulas you may want something quick and aggressive to get those in order and prevent surgery. Remicade is supposed to work really well in those situations, so that is definitely something to think on.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-21-2014, 01:46 PM   #6
GeorgeMc
 
Join Date: Nov 2014
Location: Easton, Pennsylvania
The treatment choice is yours and though LDN isn't mainstream a discussion with your GI would allow you to hear his views on it, as well.

I would caution, thought that it can take LDN quite some time to see benefits and with you acquiring new fistulas you may want something quick and aggressive to get those in order and prevent surgery. Remicade is supposed to work really well in those situations, so that is definitely something to think on.
Thanks, I was thinking about this aswell. I've just been reading about it and the risks are scaring me. Did you take Remicade before?
11-21-2014, 02:07 PM   #7
Kev
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Hi. I was on LDN for 6 1/2 years. It worked wonders, and it has literally no side effects of major consequence. The only side effect I personally ever experienced was some nice dreams. However, some other folks have reported sleep disruption.

There are downsides to it. First off, there is a challenge finding a doctor to prescribe it. But, the other issue... is that it can be very slow to take effect, and you probably will get worse before you get better. Considering your current circumstances, you might want to consider something that works faster.

After being in remission for 6 1/2 years on LDN, my disease came roaring back to life, and LDN works too slow for me to continue taking it. I switched over to Remicade. I've been on it since mid June, and doctors have upped my dose to 10 vials every 5 weeks to try to stop this flare. If that doesn't work, my only option would be a colostomy. Surgery is a last ditch option... but a person has to do what a person has to do. I wish you luck.
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Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
11-21-2014, 03:14 PM   #8
Clash
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Thanks, I was thinking about this aswell. I've just been reading about it and the risks are scaring me. Did you take Remicade before?
It is my son who has CD. He was dx'ed at 15 and we went straight to remicade for him. He then had to shorten his schedule of remicade, up the dose given at infusion and eventually add methotrexate. In the end we also moved to high dose remicade which was 15mg/kg.

The remicade did wonders for his symptoms and was almost immediate, like after the first loading dose.

All that being said, he had an area that the docs thought and tests indicated was active with simmering inflammation. He had no outward symptoms but we eventually decided to have surgery in hopes that removing that small area would improve his ability to gain weight.(He ate like a normal teen boy but due to the inflammation he didn't absorb well).

After the surgery, the surgeon was stunned at the severity of that small area. There was deep, deep ulceration, fissures in the intestinal wall and narrowing that was far more than what testing showed.

We are giving remicade a second chance, with that area removed in hoping that it isn't just that tnf alpha blocker aren't effective for him and that the ulceration was so chronically embedded the remi just couldn't overcome.

If remicade fails this time we will know that tnf blockers probably won't be effective for him and will move on to other biologics that function in a different way.
11-21-2014, 05:52 PM   #9
Kev
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Yeah, something that folks tend to overlook... the damage, scarring this disease can do in a relatively short amount of time is... frightening... awe inspiring. And permanent. I've got permanent scar tissue inside of me that is horrific. So, fight your disease aggressively
11-22-2014, 01:35 PM   #10
JDTM
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I just wanted to echo what a lot of people have said here -- LDN works for some people, and it's great, but the process is glacially slow compared to other medications. The name of the game is to get your severe symptoms under control as quickly as possible. This doesn't rule out LDN altogether, of course, but your doctor isn't necessarily wrong to think that aggressive treatment is an option worth considering. Keep us posted on what you decide and how you're doing.
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Hi, I'm Jesse!

Current meds:
Lialda (4.8g)
fluoxetine (40mg)
naltrexone (4.5mg)

Previous meds:
Dexilant (too pricey!), Xifaxan (short course), budesonide (tapered off), Pentasa (had to switch in January 2016), omeprazole

Supplements:
multivitamin
2000IU vitamin D-3

Diagnosis:
gastritis & duodenal ulcers, August 2011
Mild Crohn's in terminal ileum, February 2012
5cm of narrowing w/ no signs of active inflammation, May 2014
11-23-2014, 09:28 PM   #11
7vNH
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I took LDN for 100 days, but I didn't see that it was doing anything, so on the advice of my doctor, I quit and started bupropion...another "WTF...might as well try it" idea. I'm glad this doc helps me do this stuff!
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