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04-14-2012, 07:18 AM   #1
KWalker
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Looking into LDN

Hey guys. If any of you in this subsection have read, I have a colonoscopy a few weeks ago and during my follow up appointment yesterday my doctor told me that he found active crohns as well as some ulcers. He is very set in his ways and seems to have the same answer for everyone so he wants to put me on Imuran. After doing my own research I think I have decided against taking the Imuran at this time.


Anywho..to the good stuff. I've been doing some research on LDN on think it could be a great alternative for me right now. He said I have "active" crohns but aside from the D, I do not show any other symptoms and have been flare free for as long as I can remember. It's just not in remission I guess. I just read that it's not the greatest idea to start taking LDN while in a flare so I would clear that air first.

1.I am in Ontario, Canada and have found some compounding pharmacies but are the doctors prescribing it yet? What would be the best way to talk my doctor into it?

2.I've been reading side effects and see it appears to be very safe/low risk. Are the vivid dreams the only side effects people have been having?

3.How is it taken and is it expensive? I wouldn't say money is a huge factor right now but I am a university student and have some coverage through the school (if LDN is covered)

4.Does anybody notice this reducing BM's and creating formed stools? Like I said above my only symptom right now is the loose stools so I would love to find a medicine that would also tackle that.


I think that is all for now. If anyone has any advice/comments I would love to hear them. I would really like to see if this is an option for me.
__________________
Diagnosed:
Age 2 (1992)

Previous Meds:
Prednisone
Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

Current Treatment:
200mg Simponi, Psyllium
04-14-2012, 12:10 PM   #2
Kev
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Join Date: Jun 2006
Location: Halifax, NS, Canada

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1.) Get your hands on the printout of the study posted by Dr Jill Smith of Penn State U. on treating crohns with low dose naltrexone in American Journal of Gastr-enterology in early 2007. That might persuade your doctor to look into it further... Good luck with that.

2.) Only side effect I ever had... vivid (details, richness, totally real feeling experience) dreams. Sadly, they don't last.. or at least didn't in my case.

3.) I take 1 capsule at bedtime. Costs me $86 for 90 pills. You do the math. As far as I know, since it is a custom compound, it is not covered by any insurer. Fortunately, it is a legitimate medical expense, so it is tax deductible.

4.) Appears to stop the disease in its tracks... meaning, in my case, I go to the toilet like a normal person, and what passes from it appears to all intents and purposes normal.
But, my disease is still present. It can be detected under microscopic exam, and my pill did not eradicate the damage done to my GI tract by the crohns. I have massive scar tissue, and it presents me with difficulties to this day.. (pain, cramping, etc..). Except for that, I have no symptoms. Zero. I just have to keep taking my pills, and ensuring they are relatively fresh. I don't use pills compounded more than 90 days at a time.
__________________
KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
04-14-2012, 12:25 PM   #3
KWalker
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I was hoping you would reply. I actually contacted a compound pharmacy and spoke to a well knowledgable lady. She gave me contact info for a doctor in the area known to prescribe LDN. She said he mostly gives it to people with Fibermyalgia but to give him a call and see if he wants to experiment. I'll be a guinea pig for this for someone. Reading over, even if it didn't work to me it would be worth the risk because of the no side effects.

I also found a naturopath clinic in my area which is actually within walking distance to me. Do doctors like that charge to see people though because it is considered natural, hollistic ways to treat? The pharmacist I spoke to also told me that there are a few clinics here that will prescribe LDN. There's a really nice doctor at a clinic I've been too so I'm thinking about going to talk with him about it.
04-14-2012, 04:36 PM   #4
Kev
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I can't even hazard a guess about whether naturopaths charge fees, whether provincial health insurance covers it, or whether private insurers would/do. And I'm not even sure if fees paid to naturopathic doctors are tax deductible. Sounds like you are going to have to explore these, and when you have the answers, be sure to post the info here for all of us.
04-14-2012, 04:50 PM   #5
KWalker
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Yeah I will for sure. Here in Ontario we have OHIP which stands for Ontario Health Insurance Plan. Of course being the weekend I can't really speak to anyone so Monday morning is when I'll be doing my calling. You would think it should be covered by the government though because they are still doctors and here in Canada we don't pay to see a doctor. Its just waiting that can suck sometimes.
I will report back once I find out some more info. I left a message on a doctors voicemail today so we'll see if they call back.
04-15-2012, 11:58 AM   #6
Kev
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Yeah, I know OHIP. I lived in Toronto back in the 70's. As for coverage, there are so many things that aren't covered (at least here in Nova Scotia). For example, a doctors visit is covered, but a trip to the dentist or the optician isn't. Now, if it is a dental surgeon or an opthamaligist, they're covered. It is really bizare (sp?). I occasionally go to a chiropracter (or is it chiropractor... damn spell check has ruined my ability to spell).. They are refered to as Doctor, but aren't covered. (Fortunately, I have private insurance). I'm not sure, but I think in this province (and to add to the confusion, what is covered under one provinces health care isn't necessarily covered by anothers) that doctors of naturopathy are lumped into the same category as chiropractors/ers. Sheesh!
To sort of add insult to injury (I've told this story before in other threads, but it is weird enough that it bears repeating)... I went to this chiro for backpain (my usual treatment) but my 1st visit to this particular chiro.. After a very thorough examination, she asked me if I had any gastro-intestinal issues (and mind you, this was pre-illness, but not by very much) to which I replied no. She said she thought she detected some issues, but since I had no complaints in that area (at the time) we both discounted it. So, essentially, this 'doctor' diagnosed me 1st, and before I was even symptomatic. So, if anyone regards doctors of alternative medicine quacks, I really take issue with that.
Obviously, her examination was thorough enough that simply by touch and her knowledge of physionomy (if that is even a word, or the proper word for it) she knew something wasn't quite right. Placing her diagnosis/knowledge years ahead of all those specialists and their diagnostic machinery. Sometimes I wonder if, just if, I had listened to her, gone to ... I dunno who... and began looking into it earlier, I may have spared myself all of the grief. But wondering about 'what might haves' only leads to madness.
04-15-2012, 12:32 PM   #7
KWalker
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I was wondering where you were from but I wasn't sure so I said OHIP anyways. I guess I never thought about the eye doctors and dentists but yeah those are extra. I had to get new glasses back in September and with the cost of it, it should definitely be covered by OHIP or else I have no idea how people with low incomes would pay for them.

I hope I didn't say anything either that might have made you think I was referring to naturopaths as a lesser doctor. To me they're all the same. Hell, I think the naturopaths could be the ones making improvements with health rather than G.I's and other doctors giving more chemicals into our bodies to band aid an issue. That just seems like a lose/lose to me. I could take some heavy medicine that could band aid my crohns, but risk cancer or other serious problems, or I could try LDN and even if it doesn't work it's not much of a loss (other than money) because it hasn't affected my body.

Like I said earlier as well, I do have insurance coverage through school as part of our tuition and I know it helped with the optometrists so maybe it would cover, or atleast help with seeing a doctor for LDN. I think we need more of these doctors. Sometimes that's what it takes it to try alternative measures instead of the common ones that clearly aren't making any sort of magnificent breakthrough with crohns.

Are you the only member on here on LDN? It seems like there's not much talk about it. I'm hoping I can join in with you and we could hopefully share our experiences and help more people get on it as a safer alternative.

Looking at the top where you mentioned your price. I actually found it cheaper than that at the compound pharmacy here. The pharmacist told me it would be just under $80 for 100 pills. Regardless, when you look at it as being under a dollar a day, it's much better than buying a can of pop or whatver while out. I could find a dollar in pennies everyday! lol
04-15-2012, 06:12 PM   #8
Kev
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No, I didn't mean to infer that you were dissing Naturopaths. To me, the real credentials of a healer is whether they can heal you or not. Regardless of what their diplomas say. My back troubles started when I was a teen. I went to doctor after doctor. In my 40's, a friend induced me to go to a chiro. Fixed my back in one session. No other "doctor" ever was able to do that. I respect them, and I learned that the hard way after enduring much suffering. I hope you find a doctor to prescribe it. And I hope it works for you like it did me
04-15-2012, 08:28 PM   #9
Dekar
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Join Date: Oct 2006
I've started to get 60 day pills now instead. Been feeling like the last 30 days the medicine is ineffective.

One thing is for sure. When i get a new batch, the first couple pills definitely work.
04-16-2012, 03:59 PM   #10
Kev
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Yes, there is a problem with custom compounded medicine, or at least that has been what I've seen with LDN... The pills lose their 'umph' over time. I try to avoid using pills over 90 days old, but that isn't so easy to accomplish. Typically pills are compounded in 100 pill lots... so, if your script calls for 90 pills, they whip up 100, sell you 90, keep the rest on hand till the next scrip comes in... so, from that, it isn't hard to extrapolate that someone, sometime, EVENTUALLY, will get a batch of pills ...some/many/most of which may not be exactly 'fresh' compounded. I fought with my pharmacy over this, and they conceded not to use anything over 180 days, but that is still too long for my liking. I've noticed that things aren't so rosy when I get a partially stale batch of pills.
But, there is no way I can force a pharmacy to turf pills that 'officially' haven't expired.
Basically, what you need is an insider, someone at the pharmacy who can let you know when all 'older' stock has been doled out. Wouldn't be a problem if the maker of Naltrexone came out with a 4.5 mg coated pill that had a shelf life of a couple of years, but that isn't going to happen.
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