Need advice from experienced ldn users.

[kmole]

I started ldn in November and had a bad flare, so now I'm going to get surgery soon. My flare went away on it's own, or with the help of ldn, but I'm not sure which. I'm at the end of my 3 month supply, and I didn't take a dose last night because I was planning to stop taking it. I wanted to stop because it's $170 every 3 months and I can't afford that. Also, I figured that with the upcoming surgery there is no point to be on it because I've done fine without meds before. Also, my doctor is going to talk to me about other treatments after the surgery because she thinks ldn isn't working. I know that ldn can cause a flare before you get better but my doctor doesn't know about that and anecdotal evidence isn't usually enough for her. Today I started feeling aches all over my body (back, eyes, head, neck, knees, pretty much everywhere) and I'm really cold (possible very slight fever). I'm wondering if this might be some sort of withdrawal from the ldn or if getting off of ldn is causing crohn's symptoms or something. I really want to know if it's working because it's just too expensive for me. Also something that made me think it wasn't working was that I got warts on my lips a month after starting ldn. I'm pretty sure the warts are from biting the skin at the corners of my nails because I have small hand warts. I would imagine that if the ldn was working I would have those decrease but in the past week and a half they have been worse.

Thanks in advance.

 

[JDTM]

Hi kmole,

Where do you get your LDN from? That sounds a bit high... perhaps prices are different up in BC, but in the states, I'm able to get a 90-day supply for about $70, and that's all out of pocket (insurance won't cover the LDN). Unfortunately I don't have an answer for the rest of your questions.

 

[kmole]

I get my ldn from a pharmacy here in B.C. I'm definitely going to look into why mines more expensive. Thanks

 

[JDTM]

Right on. Here in the US, LDN isn't considered "standard of care," so insurance doesn't cover it. That said, naltrexone is generic and very cheap, so although it needs to be custom compounded here, it is very affordable out-of-pocket (especially when compared to a lot of big pharma options).

 

[D Bergy]

Skips pharmacy in Boca Raton Florida has good prices and are experts with compounding LDN. It can be done wrong so it is important to use a pharmacy that has in depth knowledge of LDN.

Not sure what the law is regarding importing from the states, but the price you are paying seems high.

Good luck.

Dan

 

[Kev]

Couple of things...

By 3 months on the proper dose of LDN (does the pharmacy have any experience with it, do you have candida???? these questions could decide whether you've wasted both time and money) you should be IBD symptom free... (As for EIM's.... those warts you talked about... I have no knowledge or info on LDN having any effect pro or con on any of them)

Cost.... The 1st pharmacy I started with charged me $86 for 90 pills.. but they were only open Mon - Fri 8:30 - 4:30... no evenings, no weekends. With my work schedule, this was a big problem. A 'new' pharmacy opened up... the news report (slow news day in the small city) touted their ability to compound custom drugs... so I approached them with my prescription... They charged me over $200 for 90 pills.. I complained, they said that their best price was $2 per pill... couldn't possibly do it for less... so I transferred my prescription back to the place with the lousy hours. Then I moved to new digs in a brand new neighbourhood... that had a little pharmacy right around the corner... with a sign saying they compounded... so I dropped off my prescription... and they charge me $74 for 90 pills... and they're open evenings, weekends, etc.. Gotta love it when it happens like that. So, shopping around works for meds pretty much the same as everything else.

 

[kmole]

I was feeling pretty okay before I stopped the ldn but the day I stopped was the day I had a fever and also the past few days I've been having pain and bloating again. Do you think the symptoms would come back so quickly? I'm thinking of just getting my prescription refilled for now and then seeing how I feel after getting back on it. Then I'd shop around before I need to get more. I heard about my current pharmacy from someone on here that gets there ldn compounded from them as well, so I assume they can compound it correctly, but it definitely is expensive.

 

[Kev]

OK.... In the early days for me, if I got a bug of some kind... cold, flu, whatever, then my disease would rebound a bit. Minor... looser stool, extra trip to the bathroom, that sort of thing. I'd stick with my pills, and this mini flare would pass as the bug passed. In the intervening years, these mini flares diminished and diminished... I can't recall the last one I had, but it was years ago. I 'think' (and this is pure conjecture, speculation, I don't have any medical training AND no data to base this on other than my own gut instincts) that... in the beginning... after being subjected to this disease for so long.. when LDN is getting started... our G/I tract based immune system is pretty weak, pretty fragile thing. Doesn't take a whole lot to upset the apple cart... but with time, continued use of LDN, it (immune system) slowly gets back into fighting trim... so these episodes just peter out.

Now, if you are just getting started, then you need to give LDN every chance AND all of the help possible... proper diet, rest, vitamins, supplements... essentially you need to nurse yourself back to health. If you just take the pill... then you are missing a golden opportunity. I was on a rigid diet, I took my supplements, vitamins, probiotics, prebiotics; I did everything I could think of to improve... no, to maximize my chances. I mean... this could literally change your life forever. So why risk it 'not working', right?

Listen, I fully appreciate that paying out of pocket is no easy matter... I recall when I was too sick to work, had no medical insurance, nothing to cover the cost of any of my drugs. Wasn't fun... my doctor kept me going by 'donating' free samples to me at every visit. I'd shop around... Why not? Worst case scenario, it is the only game in town, and some of these pharmacies are just money grubbers... and you have to pay $600 - $700 a year. However, I believe that is cheaper than a single vial of Remi... It is all in the perspective.

 

[kmole]

Yeah, that sounds like it makes sense to me. Yeah, I'm currently taking the time to transition into better lifestyle habits. I normally don't have a bad diet but I'm planning an elimination diet, and I'm making my own water kefir, and trying to get in some exercise more often. I'm also trying to drink more water, and take inulin fiber which is also a prebiotic, and I've cut out as many chemicals as I can from things like shampoos and packaged foods etc. I'm hoping that the surgery will get rid of any scar tissue so I don't get constipated all the time, and then the ldn and good lifestyle habits will keep me in remission as long as possible. I've tried imuran flagyl cipro humira remicade and prednisone, and none worked except prednisone of course, but I'll never take that again because my face was destroyed from the acne and weird rashes it gave me. My doctor said she'd talk about treatments with me after the surgery but I don't want to take any of the medications currently used because of how they suppress your immune system. Ldn is the only one that makes sense to me and that I'm comfortable taking so I hope that it does prove to be helpful and that I can find it cheaper. At least with remicade I could get it covered but if ldn really helps me then I have to find a way to afford it. I got my prescription refilled today. By the way Kev, I was wondering if you know if there is a way it can get covered in Canada. I looked on the pharmacare website and saw that naltrexone hcl, brand name "revia", can be covered but needs a special authority. I've gotten a special authority from my doctor before for remicade and humira and I'm wondering if you know anything about getting that done for ldn. I'm going to call my doctor and ask about it but I'm wondering if you've checked that out or if that's even the right drug.

 

[amwolf2]

Kev- is LDN the only thing you are on now? and has it "cured" you or pretty much put you into remission? And you believe that it is safe, has no side effects?

 

[amwolf2]

Kev- is LDN the only thing you are on now? and has it "cured" you or pretty much put you into remission? And you believe that it is safe, has no side effects?

:smile:

 

[Kev]

I will try to answer both questions... so this is going out to you 2 animals.. the mole and the wolf..

First off, as far as I'm aware, no insurance company will pay (reimburse) for LDN simply because it is non standard (not standard of care) AND considered experimental. It doesn't have a DIN number.. Naltrexone does, in 50mg pills (as does generic equivalents) so you might consider getting yourself some 50 mg pills (which would be covered) and make your own... Problem is... I believe the home made solution lasts 10 days or less even if refrigerated... Any 'home made' LDN users care to wage in on this????

As for me, the absolutely ONLY med I take (and it has been this way for over a year now) is LDN. I have taken LDN since 2007, its performance is rock solid if it is fresh compound.
FYI... for clarification... LDN is the only IBD med I take... anything else is for other issues.

Only side effect I ever had was wonderful dreams... I did have some sleep disruption this past year, but that was due to nicotine withdrawal.

Hope that answers your questions folks

 

[steph0823]

Hi everyone I just started taking LDN last week and my insurance covers it at 100% it may be worth it to call them and look into it. Good luck!

 

[Kev]

WOW!!!! Your insurance provider is covering your LDN... that is phenomenal. May I ask who your insurer is? Does your LDN come with a DIN number? This may set some sort of precedent... I mean, I don't mind spending 75 cents a pill... but I'd rather keep my money...

 

[steph0823]

I have United Golden Rule. I don't know what a DIN number is.

 

[Kev]

Typically, to cover the cost of a drug... the insurers require a DIN (drug identification number is my wild assed guess)... typically it is on the bottle label or papers that come with a drug... I think it is just a standard way of identifying drugs and the 'cost' per.

 

[steph0823]

Oh ok. No information was needed from me fore the.insurance company. I just dropped of my script gave my insurance info and they called me later to come pick it up I asked how much and they said no charge.

 

[Kev]

DIN number wouldn't come from you... it would come from the pharmacy or the insurer.

If there is a DIN number on the label of your bottle... I'd make a note of it.. just in case you ever have to go to a different pharmacy... that number would spare you being charged.