LDN (Low Dose Naltredone)

[positiveness]

Hi everyone! This is going to sound to good to be true, but I am starting to walk unassisted and without my cane after about 17 days of being on this medication, thank God. I would strongly recommend anyone with this terrible disease to try it for two months. Taking LDN has been a life changer for me.

[jimeka]

So pleased that it is working for you. Enjoy your new lease on life. Blessings Jimeka

[positiveness in reply to jimeka]

Thank you so much Jimeka.

[Morllyn]

😮🙂😀🤞Keeping my fingers crossed.

[Iona60]

positiveness I've been reading about LDN for years. If the US insurance companies ever start denying the DMTs because of their prohibitive cost, it's in the back of my mind as a go to med.

Hope you continue to do well on it. Do you need a Rx from your neuro for it?

[erash in reply to Iona60]

Iona60

My neuro gave me a prescription for a compounding pharmacy in the area when I asked about it. Hadn't filled it. Have heard great things about it. Keep us updated and so happy for u positiveness

[positiveness in reply to erash]

So true about reading about the way you could feel with LDN. It actually sounds to good to be true. we all know how that goes.

[positiveness in reply to Iona60]

Hi Iona! It's good that you have been researching LDN. You will need an Rx from your neurologist. His workers, or you, will need to find a compound pharmacy as well.

LDN also works gradually as well, but you eventually feel and see the difference in about 2-4 weeks.

[Iona60 in reply to positiveness]

erash are there any benefits to using LDN while on a DMT?

[erash in reply to Iona60]

Iona60 I don't think it's an either-or

U can use both DMT and LDN but be sure doesn't interact adversley

[positiveness in reply to erash]

yes, you can use both, but it's always good to check with Your neurologist. That's who will give you the script anyway.

[greaterexp]

What a remarkable response! I'm so happy for you!

[positiveness in reply to greaterexp]

Thank you so much. = )

[positiveness]

Yes, I am so glaf too, and I do think it's a great conversation to have with your neurologist.

[joys-an21]

I took LDN several years ago and had no ill effects from it. I had been taking Neurontin three times a day for the pain in my legs and within a short time after beginning the LDN I was completely off of it and haven't taken it since. I have been considering taking it again. The only reason I stopped was the compounding pharmacy I went to wouldn't mail it and it was a 75 mile round trip to get it. At the time I wasn't able to get there and had no alternative but to stop taking it. I believe you can get it off the internet (you could at that time), but I didn't feel comfortable going that route. Right now I am between neuros, but that will be one of the questions I will be asking when I find a new one.

[positiveness in reply to joys-an21]

Hi! Finding a compound pharmacy around you is tough. So sad there's not a better way to receive it and that you hadt stop taking it. That's just not right or even ethical if you can't get a medication that improves your quality of life.

[lexsarset]

Thanks for sharing! I will share with my specialist.

[positiveness in reply to lexsarset]

Great plan.

[erash]

I may be inaccurate but LDN means low dose naltrexone

It's the drug used to reverse opioid over dose and works by blocking the MU receptors in the brain. Maybe you've heard that they are now suggesting all chronic opioid users get a prescription for naltrexone in case of inadvertent OD?

So it's a relatively safe, well studied drug for overdose. I'm still trying to figure out the mechanisms of action that benefit MS. I found the compounding pharmacists to be a good resource of info but I'm not sure they are totally clear on its mechanism either...

[positiveness in reply to erash]

Yes, it is used to treat an OD, BUT that dose is at 50 mg, whereas to benefit people with MS, the dose is at 4.5 mg, thus a low dose.

[positiveness]

Sorry everyone. Yes, I do mean low dose naltrexone. It's amazing what one wrong letter can do.

[SueAB]

positiveness. thank you for your post. I saved an article from our MSAA Magazine, but lost it. What are the side effects of Naltredone? Do I need a script for it? What else can you tell me about this drug?

[positiveness in reply to SueAB]

Hi Sue. I'm sorry I misspelled the NaltreDohe word. It's supposed to be spelled with an X for naltreXone. There are actually no side affects to Low Dose Naltrexone. You will need ascript for it, and the usual starting dose is only 4.5 mg. The range of effectiveness for LDN is from 1.5 mg to 4.5 mg. Anything under 1.5 mg or over 4.5 mg is not affective.

The FDA approved naltrexone at 50 mg for people that overdosed (OD), but a doctor found out that it works well at a low dose, with MS patients and other autoimmune diseases. Because it was not approved at a low dose, insurance will not cover it. I pay $50 a month, and think it's well worth it. My quality of life is much better with it.

What it does for me may not be the same for others, but I have not read or heard of anything negative about it. It has greatly reduced my spasticity and anxiety level so far, and it has only been about 24 days. It has also helped with my fatigue and alertness.

You can also use LDN with another medication that treats MS.

You, or your neurologist, will need to find a compound pharmacy.

This medication works gradually, so it's not something you take one night and feel a difference the next day.

You can also go to LDN.org to find out more information, because I am sure there is more I can say about it and it just slipped my mind.

[SueAB in reply to positiveness]

Thank you!

[positiveness]

Some more information about LDN is that it does not suppress the immune system like MS medications. it actually uses the immune system.

[Nom_De_Plume]

positiveness

Just catching on to this thread...sorry!

Positiveness, I am wondering, where you said the LDN "uses the immune system," would being on an immunosuppressant lessen the effectiveness of LDN? Curious. Thanks!

[positiveness in reply to Nom_De_Plume]

Hi! That is a very good question to ask. I had to ask my compounding pharmacist the same question, because I am also taking Gilenya, but he said it wouldn't be a problem to use both medications. I am going to go off the Gilenya though, because it is increasing my liver enzymes.

[positiveness in reply to Nom_De_Plume]

So what LDN does for your own immune system is that it increases your internal opioid level, which for people with ms, is usually low.

[Nom_De_Plume]

@positiveness

Okay, clearly I'm out of the loop on this. At the risk of sounding stupid, what is our internal opiod level, please, and what does it have to do with our immune system?? (Could look it up of course, but perhaps others would like to know too?) 😊 Thanks!

[positiveness in reply to Nom_De_Plume]

Ok, your internal opioid level actually consists of endorphins that your own immune system provides. Unfortunately, with MS and many other autoimmune diseases, our immune system does not supply enough of these crucial opioids, so we need to take something like LDN to help increase our level. Feel free to read about this at lowdosenaltrexone.com if you ever have the time in this busy world. Also feel free to ask any more questions for me.

[positiveness in reply to Nom_De_Plume]

Also remember that you should ask as many questions that you have and not ever feel stupid. It's just one of the many different ways we learn, or are enlightened. I have learned that the only stupid question is the question you don't ask.

[AngieRowe]

Check out Multiple Sclerosis: flip.it/tzW4PY, a Flipboard topic.

LDN

[positiveness in reply to AngieRowe]

Thanks for sharing that. A cure would be outstanding.

[Nom_De_Plume]

@positiveness

Thank you very much for explaining this 😀. It's very interesting!

[positiveness in reply to Nom_De_Plume]

Glad I can help.

[positiveness]

I need to say that it's not spelled naltredone, but naltrexone with an x and not a d.

[Becky63]

So, I just saw this post. But here is the website with all info about it. There are phone numbers for the compounding pharmacies listed I called the Colorado number and the pharmacist answered all of my questions as well as being able to ship to Texas

lowdosenaltrexone.org/index...