Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Got a ticket for the LDN bandwagon!

Hey Bridget,

I just talked to the only pharmacy who will help me out with this LDN thing on an outpatient basis. They have to bring in naltrexone in powder form, then stick it in capsules for me.

Which got me to thinking....I'm trying to do this whole NSD thing too....and they'll probably cut the naltrexone with some sort of starchy filler to make up the 4mg capsules for me.

Do you know if you can compound a drug without a starchy filler? Anyone know? Tim, where are ya...maybe he knows...

Hi Megan

Good luck with the LDN... I hope that it workks for you keep us posted... i don't have an appointment with my rheumy until aug 20 ( I will have to mention this to him ) to see what he wants to do med wise

So I dropped off my script today and they said it would be roughly $24/month for LDN (after compounding) without any sort of coverage (for the 4mg capsules). Good news for Canadians wondering how much it is.

It goes down to $7/month with one of my drug plans (Alberta Blue Cross), and the other (grad drug plan) won't cover compounding, but I might be able to get the remainder covered if I jump through the necessary hoops.

Anyway, the most it'll cost me is $7 a month, which sure beats anything else I'm on.

It should be ready to pick up in a day or two.

Hi Megan,

Good Luck with it. I am pushing my RA doctor on it and mentioned it to him again today but he does not want to hear about it at this time from a two time TNF flunky.

Hopefully, Kat can persuade him.

Ali

Hi Ali,

I'm so sorry to hear that. If you are a two time TNF flunky, then all the more reason to try it, imho. It's nothing like anti-TNFs, it has way less for side effects, it costs alot less to try it out, and it's not an injection.

I'm a nearly a two time flunky too. As you know, humira didn't work, and I'm sticking with enbrel even though it's only working at about 50% of what it used to. GP and I thought best to try LDN before experimenting to see if I could be a 3 time TNF flunky.

Why does it seem that rheumies are so hesitant to try this? Does anyone out there have a rheumy prescribing LDN?
I know Bridget has a neurologist prescribing hers, and my GP is prescribing mine. Maybe you need to bring it up with your GP too.

I would love to persuade my rheumy to look seriously at this. We have three people here on it now, right?

What say we start a discussion specifically about LDN. They aren't going to believe anything without all the proper trials, but perhaps they'll listen to patients who are on it. I would also wonder how similar your cases are (age, symptoms, fusing, etc.) and whether or not something else you are taking might be helping with the good results. It won't be a proper clinical trial, but we could be as scientific about it as we can on our own. I'm thinking that once we have a few months' results from the people here, I could forward the discussion to the rheumy and ask him to take a look at it.

As more people convince their various docs to let them try it, their results could be added to the discussion.

What do you all think?

Hugs,

Hi Kat,

I think it is a great idea.

One of the issues that I had was to be able to provide case study to our doctor. He is quite open to different meds as long as there have been clinical case studies published. At least that has been the case for me.

As you stated we might be able to persuade some doctors to look at more seriously and probably start a clinical study not only for AS but also for other autoimmune diseases.

Ali

Admins??? Can we get a forum started on this?? Perhaps over the the treatments area??

Puhleasse?

Many hugs,

Great idea, Kat. We definately need a separate forum for LDN.

Perhaps the docs don't like to prescribe it 'cause:

a] off label use;
b] so cheap no profit for drug companies?????

I will be talking to my GP about it too.

Cheers,
Rita

James, 12, Adrian, 10, Elisabeth, 3, my babies!

Well Kat,... um, errrr...

If the three members(+) who are trialing LDN are interested and agreeable to sharing the details of their experience, then I certainly agree it could be of benefit to create one clean thread, (with instructions to limit participation and whatnot?) on the subject LDN as an off-label AS treatment - KA case studies!

Howeverrrrrr, I am yet to be convinced how one thread might warrant it's very own dedicated forum... I do think the Pharmacy Forum might suffice as an appropriate (and existing!) space for such an endeavour!

Megan, clever girl that she is, might just be encouraged to craft such a post... so I suggest you ask her! *hint*

Hugs!
mig