Is LDN only available through compounding pharmacies?

DebE13 · Post by **DebE13** » Fri Dec 11, 2015 5:43 am

I've been trying to read up on LDN before my appointment today and found this from
http://www.lowdosenaltrexone.org/index. ... y_warnings:

"Fillers. Capsules of LDN necessarily contain a substantial percentage of neutral inactive filler. Experiments by the compounding pharmacist, Dr. Skip Lenz, have demonstrated that the use of calcium carbonate as a filler will interfere with absorption of the LDN capsule. Therefore, it is suggested that calcium carbonate filler not be employed in compounding LDN capsules. He recommends either Avicel, lactose (if lactose intolerance is not a problem), or sucrose fillers as useful fast-release fillers."

Any suggestion as to what would be a safe combination to request?

I thought this would be an easy process but I found out Walgreens only carries the 50mg dose and I have no compounding pharmacies in the area. I will have to drive 30 minutes to a different city to have it made. Insurance is another matter..... I have to use a pharmacy from their list and I believe I have coverage at the top tier rate. I didn't realize many insurances won't cover it.

What a process........

Another interesting piece of info from the same article related to thyroid:

"Those patients who are taking thyroid hormone replacement for a diagnosis of Hashimoto’s thyroiditis with hypothyroidism ought to begin LDN at the lowest range (1.5mg for an adult). Be aware that LDN may lead to a prompt decrease in the autoimmune disorder, which then may require a rapid reduction in the dose of thyroid hormone replacement in order to avoid symptoms of hyperthyroidism."

dfpowell · Post by **dfpowell** » Fri Dec 11, 2015 9:50 am

Deb,

I think the cheapest is through Skip's pharmacy in Florida and they do mail order. You could call the pharmacy for more information. I think Monique uses them and may be able to give more information, you might try to pm her. They do offer a topical version of LDN. This will probably not be covered by insurance.

Good luck!

Lilja · Post by **Lilja** » Fri Dec 11, 2015 11:00 am

Hi all,

When LDN first was "invented"... Whom is it designed to help, and for which diseases?

Lilia

DebE13 · Post by **DebE13** » Fri Dec 11, 2015 11:17 am

Thanks Donna, I spoke with the pharmacy this morning and they were the nicest people I've ever talked to and they said they would try to get it ready today (appt is late afternoon) or tomorrow for sure. The pharmacist said they fill a lot of scripts for LDN and do a lot of mail order. They were so nice when I asked about the fillers and said they would make note not to use lactose and use micronized cellulose instead (hoping there are no issues with that). Walgreen has been notoriously inconvienenced by all my special requests so this was quite a pleasant experience.

I may be ahead of myself considering I haven't had the appointment yet but at least I am more prepared.

Post by **tex** » Fri Dec 11, 2015 11:44 am

Lilja wrote:Hi all,

When LDN first was "invented"... Whom is it designed to help, and for which diseases?

Lilia

Lilia,

Naltrexone was originally prescribed as a "detox" drug to help people who are trying to end a dependency on alcohol or narcotic drugs. But much larger doses (50 mg and up) are used for patients trying to end an addiction.

Tex

DebE13 · Post by **DebE13** » Fri Dec 11, 2015 12:21 pm

I found the article I quoted above very interesting. All medications make me very nervous and this one seems to be helpful for an array of issues. It's great to see it helps so many people but I'm wondering if there's a catch. There always is but I'm at the point now where I need some relief and LDN seems to be the lesser of many other evils.

dfpowell · Post by **dfpowell** » Fri Dec 11, 2015 3:31 pm

Deb,

Some of us are in a LDN Facebook group, would you be interested in joining. It is a way of sharing LDN information.

DebE13 · Post by **DebE13** » Sat Dec 12, 2015 7:04 am

Donna, I'd love to. It's always encouraging to see other people's experiences.

My PCP was great. She thanked me for doing her work for her.

i came prepared with possible dosing info and which pharmacy we would have to use. I contacted the pharmacy and got set up in their system. They were even able to fill it that night (very short notice). They do a lot of work for a small town "up north" near my cabin so were very knowledgeable about it's off-label use. There is a high elderly population (retirees) and they work with the pain clinic. The pharmacist actually asked me to call them back in two weeks to give them an update. My PCP started me on a 3 mg dose to try. The pharmacist said the protocol the pain clinic was using was 1.5 to 3 to 4.5 in two week increments so she was curious to see if results were seen any faster. It's an odd feeling to be told there are no established guidelines out there (yet) but at the same time I suppose that's how progress is made. My PCP told me I am her first patient she has prescribed LDN to for pain. It's a bit unnerving but I am thankful at the same time that she has an open mind, has done her research, and doesn't have an ego that gets in the way of listening to what I wanted to try. Of course, she did bring up the use of a handful of depression medications that may help but I told her that wasn't a road I was interested in traveling.

She also told me I still need to see a rheumatologist because she wants another set of eyes on what's going on. I told her my experience and she was surprised at the rudeness of the receptionist. She offered to call a manager so their front office could get educated on how to work with referrals and asked that I not ditch the rheumatologist because of a bad office person. I agreed and will be making my appointment which will probably turn out to be in the next few years.

Realistically, by the time there is an opening in spring, I will have a good idea if the LDN is working. If not, then I can hear what the next suggestion is.

In the meantime, I am evaluating every move I make trying to determine if i feel any better today or if it's just in my head because I want it to work.

Although, the in my head improvements don't have me too worried- there have been so many other drugs/supplements that I've tried and hope they would be the "cure" that there is no confusion with the power of suggestion. The pain is there or it isn't. The same for D- it's either a big mess or a long awaited visite from Norman.

I think I will put "patience" on my Christmas list this year. :)

dfpowell · Post by **dfpowell** » Sat Dec 12, 2015 8:38 am

Deb,

Would you pm me your email address, and I will add you to the LDN group. Which pharmacy did you find to fill your prescription?

DebE13 · Post by **DebE13** » Sun Dec 13, 2015 11:58 am

Thank you. I drove to Johnson Pharmacy in Merrill, WI. It's a 30 minute drive and isn't horrible but is still a drive. I can switch to mail order if I want. After talking to my insurance company, they said there happens to be two compounding pharmacies in Merrill. The next closest one to me is in Bloominton, MN.