low dose naltrexone

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I need help
Regular Member


Date Joined Jun 2012
Total Posts : 206
   Posted 7/22/2012 3:06 PM (GMT -6)   
I've been reading about some people taking low dose Naltrexone.  Just wondering how many and the results?  If you are using it, did your regular GI or Dr. give you the prescription? I have a feeling my old school Gi would give me a blank look if I asked him. 

ItsAlwaysSomething
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Date Joined Oct 2011
Total Posts : 1407
   Posted 7/22/2012 6:35 PM (GMT -6)   
I was able to convince my GI to prescribe LDN for me.
I get it by mail (live in MA) from Skip's Pharmacy in Boca Raton, FL.

If you are looking for a Dr in your area who prescribes it, you could ask the staff at Skip's Pharmacy for names of Drs. 1-800-553-7429
Usually Naturopaths prescribe it.

My GI looked it up online and saw that it had no dangerous side effects.
Female, USA
Diagnosed pancolitis 12/2003, Colazal generic (balsalazide).
Benebiotic probiotic, multi-vitamin with iron, Starwest organic slippery elm powder, L-Glutamine, fish oil, whey shakes and LDN. Avoid lactose and most gluten products.

bananagirl
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Date Joined May 2011
Total Posts : 4480
   Posted 7/22/2012 6:45 PM (GMT -6)   
I started taking it almost 60 days ago. I get it online because I couldn't get a doctor to write me a prescription for it. So far, I'm still waiting for it to help with my UC symptoms. Today wasn't a good day- have gone 9x already and will definitely go more by the end of the night.

Nothing wrong with giving it a try though. Like any medicine, it helps some people and doesn't help others.
Joanna, 22
8 fecal transplants- got worse.
taking- probiotics, vit d, 4.5 mg LDN , l-carnitine, CoQ10, B6, welchol
tried- canasa, pred, 6mp, remicade, rowasa, lialda, entocort, l-glut, vit E enema, VSL enema, aloe vera, NAG, prilosec, zofran, psyllium, bentyl, cipro, flagyl
no meat, dairy, eggs, gluten. include-juices, fruits, veggies, greens, grains, soy, nuts/seeds

ItsAlwaysSomething
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Date Joined Oct 2011
Total Posts : 1407
   Posted 7/23/2012 7:28 AM (GMT -6)   
I've been using transdermal LDN for about 6 months as well as being lactose free and avoiding gluten. Also take better probiotic (Benebiotics) and l-glutamine each morning. Drink slippery elm in a few ounces of juice each evening before bed, too.
It's probably a combination of the above but I've seen significant improvement in symptoms; lessening urgency and fewer BMs depending on what I eat.

You should read info at LDN sites and know that it comes various forms including transdermal and capsules. Fillers used in capsules can be a problem for some. Good idea to speak with pharmacy before asking for script from doctor.

Hope this info is helpful.
Female, USA
Diagnosed pancolitis 12/2003, Colazal generic (balsalazide).
Benebiotic probiotic, multi-vitamin with iron, Starwest organic slippery elm powder, L-Glutamine, fish oil, whey shakes and transdermal LDN. Avoid lactose and most gluten products.

I need help
Regular Member


Date Joined Jun 2012
Total Posts : 206
   Posted 7/23/2012 10:39 AM (GMT -6)   
My GI will not prescribe it.  So, I guess it's time to ask my regular Dr.  I have a feeling he is going to say talk to my GI.   I did go to the website and there is a number to call and ask for local doctor's who prescribe it.  I think I will do that.  Has there been any side effects that you have noticed?
 
Thanks for the info.

I need help
Regular Member


Date Joined Jun 2012
Total Posts : 206
   Posted 7/23/2012 11:56 AM (GMT -6)   
To those who are taking it, do you have to be off all other meds?  I just started week 2 of Imuran.  I really don't want to be or stay on Imuran but feel I don't have much of a choice. I'm also tapering off pred right now. 

Old Mike
Veteran Member


Date Joined Jan 2007
Total Posts : 2618
   Posted 7/23/2012 12:10 PM (GMT -6)   
Bananagirl:
Where did you finally get the naltrexone,aldaychemists or somewhere elese.
Did you use a regular credit card or something prepaid.
Thanks
Old Mike
 

Post Edited (Old Mike) : 7/23/2012 11:38:08 AM (GMT-6)


ItsAlwaysSomething
Veteran Member


Date Joined Oct 2011
Total Posts : 1407
   Posted 7/23/2012 1:38 PM (GMT -6)   
I need help

The number provided at the LDN website did not produce results for me. Calling Skip's at 1-800-553-7429 did get me a number of a group of doctors in my area.

If you want to know about reactions with other meds, I think you should ask someone at Skip's Pharmacy who would have that information.
The only side effect I've experienced is increased dreaming or "awareness" of dreaming. The first night when I applied it I was awake on and off but that did not continue.

I'm not sure how Bananagirl got it online. LDN is a prescription drug that can only be provided by a compounding pharmacy.
Skip's has the reputation of being most knowledgeable.
See Dr. Skip Lenz on YouTube.

http://www.youtube.com/watch?v=qq2CTon0tb8&feature=related
Female, USA
Diagnosed pancolitis 12/2003, Colazal generic (balsalazide).
Benebiotic probiotic, multi-vitamin with iron, Starwest organic slippery elm powder, L-Glutamine, fish oil, whey shakes and transdermal LDN. Avoid lactose and most gluten products.

Post Edited (ItsAlwaysSomething) : 7/23/2012 12:42:30 PM (GMT-6)


I need help
Regular Member


Date Joined Jun 2012
Total Posts : 206
   Posted 7/23/2012 3:09 PM (GMT -6)   
Thanks,
 
I called and got an e-mail address of someone who can provide me with a dr. in my area.  My GI just e-mailed me back and said NO.  I figured he would.  It's his way or the highway.

tcf5010
Regular Member


Date Joined Mar 2011
Total Posts : 107
   Posted 7/23/2012 3:51 PM (GMT -6)   
I was able to stop taking all of my meds - Including 6mp which is like Imuran.

Side effects: same as ItsAlwaysSomething said about the dreaming. I have also noticed stronger hangovers than usual after a night of drinking.

Also agree with ItsAlwaysSomething, Diet mods. will help when on the trans. LDN. I'm not that strict with Diet - but I try to cut down on lactose, grains, and sugar. And I don't really drink beer - usually stick with vodka waters.

And its kind of funny the work I have to go through to get the stuff - I live in NC.. my prescribing Doc is in PA (Phone consultation). Then I get it shipped from Skips in Boca to my sisters place in Richmond VA (Because for some reason NC doesn't allow direct shipments). Then the sis ships it to me Ha.
Todd, 25 yrs old. Greensboro, NC. UC since 08'

Currently close to Remission - (4-6 BMs)

Meds: LDN and multivitamin.

I need help
Regular Member


Date Joined Jun 2012
Total Posts : 206
   Posted 7/23/2012 6:05 PM (GMT -6)   
tcf5010, 
 
How long have you been on ldn?  Did you have to taper off everything first?

I need help
Regular Member


Date Joined Jun 2012
Total Posts : 206
   Posted 7/24/2012 9:37 AM (GMT -6)   
I called a couple of doctor's off that list and they charge $300-400 for the first visit.  That seems very high for a first visit.   Is this in line with people without insurance paid????  I want to try LDN but I can't pay that much money for a first visit.

Post Edited (I need help) : 7/24/2012 10:45:45 AM (GMT-6)


InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4679
   Posted 7/24/2012 1:55 PM (GMT -6)   
Ineedhelp,
 
I have been on various forms of LDN for more than 1 1/2 years now.
Went into remission 7 days after going on LDN.
There are certain fillers you need to stay away from.
 
My Gastro refused to prescribe it for me, and I ended up by having to find a local osteopath who did prescribe it.
 
If you need more info, there are ways to get it, email me ( my email is in my profile).
 
Goodluck.
Rx meds didn't help me. But 4.5 mg LDN +Paleo diet +supplements=REMISSION.Protein shakes w/almond milk,Maca powder,L-Glutamine,D-Ribose,chia seeds.VSL#3,K2,VIt. D3,slippery elm bark powder.For more info,my protocol is the 11th post at this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318
If you have any questions, you can find my email address at my profile.

ItsAlwaysSomething
Veteran Member


Date Joined Oct 2011
Total Posts : 1407
   Posted 7/24/2012 3:40 PM (GMT -6)   
I posted this back in April:

"I live in Mass. and get my transdermal LDN by mail from Skip's.
Phone number - 1-800-553-7429
The cost (for me) is about $30 per month and not covered by insurance.

Someone posted the following on the UC website:
Phone consult for LDN
John Sullivan 717-697-5050"

I think the prices you mentioned for an initial appt. are in line with others I've seen.
I think the phone consult with John Sullivan is less expensive.
It can't hurt to google him and call and ask. He can't charge you without a credit card number. You might ask Skip's if they have received scripts from his office.
The drug is generally not covered by insurance but costs less than a lot of copays.

Hope this helps...:-)
Female, USA
Diagnosed pancolitis 12/2003, Colazal generic (balsalazide).
Benebiotic probiotic, multi-vitamin with iron, Starwest organic slippery elm powder, L-Glutamine, fish oil, whey shakes and transdermal LDN. Avoid lactose and most gluten products.

ItsAlwaysSomething
Veteran Member


Date Joined Oct 2011
Total Posts : 1407
   Posted 7/24/2012 3:46 PM (GMT -6)   
Found this with reverse phone look-up:

Family Practitioners
John Michael Sullivan
1001 S Market St Ste B
Mechanicsburg, PA 17055
(717) 697-5050

If you're on Facebook, you can search on "low dose naltrexone" and find several groups. Perhaps you can get further info from one of them.
Female, USA
Diagnosed pancolitis 12/2003, Colazal generic (balsalazide).
Benebiotic probiotic, multi-vitamin with iron, Starwest organic slippery elm powder, L-Glutamine, fish oil, whey shakes and transdermal LDN. Avoid lactose and most gluten products.

Post Edited (ItsAlwaysSomething) : 7/24/2012 2:54:45 PM (GMT-6)


italo
Regular Member


Date Joined Dec 2011
Total Posts : 74
   Posted 7/24/2012 4:26 PM (GMT -6)   
I started taking LDN about 2 1/2 months ago. I think it combined with diet mods (no lactose, no gluten, no sugar, no alcohol) helped reduce my symptoms. I have much less urgency and a very low incidence of seeing any blood. Prior to the diet changes, I was about 80% back to normal with Asacol and rectal therapies. The diet changes and probiotics got me to 90% and I feel LDN got me to 95%. For me, its not a cure or replacement drug. But combined with other therapies, I believe it is helping with healing vs reducing the inflammation. My GI (in Worcester Mass) wrote the script and was very supportive and familiar with LDN. I get mine at the Boulevard Pharmacy in Worcester and it costs $35 for a months supply (not covered by insurance)
Dx with pancolitis Aug 2010; took 14 months to get in remission; Curr Meds: Asacol, Mesalamine Enemas, LDN; Supplements: VSL #3, Turmeric, UltraInflamx, Phoschol, Fish Oil, Ground Flax Seed, Calcium, D3; Diet: following low FODMAP, nor dairy, no sulfites, no carageenan, no alcohol, no wheat, no sugar alcohols.

I need help
Regular Member


Date Joined Jun 2012
Total Posts : 206
   Posted 7/24/2012 7:19 PM (GMT -6)   
Thanks for the info. I will call him tomorrow.  Hopefully I will get some good news.

bananagirl
Veteran Member


Date Joined May 2011
Total Posts : 4480
   Posted 7/24/2012 8:48 PM (GMT -6)   
old mike, i haven't been able to order my next shipment because i haven't found an international prepaid visa card. i want to order from alldaychemist but don't want to use my debit card. my only other option is the prepard card so when i find one, that's what i'll use.
 
my first 2 shipments came from another online source.
 
itsalwayssomething, there are quite a few online pharmacies where you can get naltrexone. my doctors wouldn't write a script for it.
Joanna, 22
8 fecal transplants- got worse.
taking- probiotics, vit d, 4.5 mg LDN , l-carnitine, CoQ10, B6, welchol
tried- canasa, pred, 6mp, remicade, rowasa, lialda, entocort, l-glut, vit E enema, VSL enema, aloe vera, NAG, prilosec, zofran, psyllium, bentyl, cipro, flagyl
no meat, dairy, eggs, gluten. include-juices, fruits, veggies, greens, grains, soy, nuts/seeds

Post Edited (bananagirl) : 7/24/2012 7:51:25 PM (GMT-6)


SS0000
Veteran Member


Date Joined Feb 2012
Total Posts : 673
   Posted 7/24/2012 9:31 PM (GMT -6)   
insofla,
hi, did you start at 1.5 ldn and gradually work up to 3.5 or 4mg? and when you started were you taking any amount of predisone
 
thanks for your time in advance
 

moose2012
Regular Member


Date Joined Jun 2012
Total Posts : 20
   Posted 7/25/2012 12:58 AM (GMT -6)   
i need help, i also had a very difficult time finding a source for ldn no doctors would prescribe it to me. So i went ahead and ordered it from alldaychemist and it is fairly cheap about $12 for 10 pills and then $25 for shipping from them and it gets to your house in about 15 days. It comes in 50mg tablets that you have to dilute with distilled water to achieve the 4.5 mg dose. I figured it out and 10 pills should be just over a 3month supply so i guess after 3 months I'll know if it is doing anything for me. Tomorrow is the big day for me as I'll start LDN. fingers crossed it works, and I'll make sure to post my results with LDN.
22male
dx pancolitis
was on asacol hd 2@3xdaily wasn't helping
bad reactions to pred and entocort
probiotics, iron, slippery elm, vitamin c 1000mg, l-glutamine
currently just taking lialda 1.2g 3 a day

Post Edited (moose2012) : 7/25/2012 12:04:14 AM (GMT-6)


InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4679
   Posted 7/25/2012 6:56 AM (GMT -6)   
SSOOOO,
 
HI There.
NO, I was told by Skip's that because of the severity of my symptoms (the heavy bleeding), I should start at 4.5mg and stay on that for at least 6 months, and whatever minor side effects happened, just suck them up.
 
So that's what I did.
 
If you need any other info, feel free to email me (my email is on my profile).
 
I hope this helps.
 
When are you starting the LDN? and which form of it?
 
Please stay in touch.
Rx meds didn't help me. But 4.5 mg LDN +Paleo diet +supplements=REMISSION.Protein shakes w/almond milk,Maca powder,L-Glutamine,D-Ribose,chia seeds.VSL#3,K2,VIt. D3,slippery elm bark powder.For more info,my protocol is the 11th post at this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318
If you have any questions, you can find my email address at my profile.

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4679
   Posted 7/25/2012 7:05 AM (GMT -6)   
Moose,
 
Glad you got LDN and will be starting it soon.
 
Let us know how it goes.
 
Rx meds didn't help me. But 4.5 mg LDN +Paleo diet +supplements=REMISSION.Protein shakes w/almond milk,Maca powder,L-Glutamine,D-Ribose,chia seeds.VSL#3,K2,VIt. D3,slippery elm bark powder.For more info,my protocol is the 11th post at this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318
If you have any questions, you can find my email address at my profile.

SS0000
Veteran Member


Date Joined Feb 2012
Total Posts : 673
   Posted 7/25/2012 11:06 AM (GMT -6)   
insofla - i emailed you thankyou

SS0000
Veteran Member


Date Joined Feb 2012
Total Posts : 673
   Posted 7/25/2012 1:34 PM (GMT -6)   
INSOFLA,
what filler did your ldn have?

I need help
Regular Member


Date Joined Jun 2012
Total Posts : 206
   Posted 7/25/2012 3:35 PM (GMT -6)   
Its always something,
 
Thanks for the name of dr. sullivan.  I called and he's out of town until next week. However, I will get a call back as soon as he gets in.  Yes, price wise,much better.  I hope i can get it and I hope it works.

Post Edited (I need help) : 7/25/2012 4:56:29 PM (GMT-6)

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