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Just received my expensive Low dose naltrexone. Woukd like reassurance

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Posted 12/25/2018 1:41 AM (GMT 0)
I'm going to start low at . 5 mg, halving the 1 mg pill. My main complaint is nerve pain and some bone pain. I also have the means to get my med cannabis card.
Anyway, I'm nervous. The nerve pain causes so much anxiety--it's the reason I've applied for SSI.
On the FB forums, I've heard positive responses. My main fear is it will cause my nerve pain to be worse for whatever reason. I'm Taking it for pain improvement.
Just looking for reassurance so I can get up the nerve to start this.
Posted 12/25/2018 2:13 AM (GMT 0)
Yours' was expensive? and in tablet form?


I had mine compounded at the local Pharmacy....not expensive.

I didn't realize the low dose was available in tablet form.

I hope it works for you. Unfortunately it didn't help me. It was pre-lyme diagnosis...and when I took the LDN, i started to have pain in the middle of the night.
It did go away after discontinuing though.

Other forum members have stated it did work for them...
Posted 12/25/2018 2:35 AM (GMT 0)
Hello, 6Hypnone:

I've been using Low-Dose Naltrexone (LDN) for a couple of years, though not for nerve pain. For me, it helps with sleep, though it's not a sleep medication, per se.

I also get 1.0 mg bisected tables from a compounding pharmacy and started with 1/2 tablet (0.5 mg) per night at bedtime. Each week, I increased by 0.5 mg, until I settled on 3.0 mg (three tablets) each night.

Originally, I went to 3.5 mg, but didn't sleep as well. So, I backed-down to 3.0 mg.

So, I just wanted to share my experience and let you know I've not had any nerve pain, after taking it for a couple of years.

If you do take it, I hope it works for you. I agree with your idea of starting low and going slow.

Good luck,
Dude
Posted 12/25/2018 12:43 PM (GMT 0)
Have been taking LDN for a few years as well. Has been helpful. I started at 1.5mg, no matter what it's good to start at a very small dose. If you can, give it a few weeks, can take time to notice changes with it. It's hit or miss like a lot of stuff, but it seems to help quite a few patients.

If nerve pain is very bad I think CBD w/ THC is also a good option to try, def helps me. Often times it helps my anxiety just knowing I have it in case I need it (I try to take it only as needed). The worst is getting crippling pain and not having the tools to manage it.
Posted 12/25/2018 5:34 PM (GMT 0)
Mine is 35$ for 30 pills that I get from my local compounding pharmacy. Not cheap cheap but not expensive either. I “feel” like it helps but it’s hard to say with certainty what exactly works when you are on a zillion medications and supplements.
Posted 12/25/2018 7:12 PM (GMT 0)
In case it helps anyone save money, I get my LDN from the following pharmacy:

CareFirst Specialty Pharmacy
https://www.cfspharmacy.pharmacy/human-medicine/low-dose-naltrexone

On the above page, you will find a variety of different LDN/ULDN formulations and pricing.

I get 100 tablets of LDN at 1.0 mg each for $51.95 USD. That's the total price and it's usually delivered (via U.S. Postal Service) in just 2-3 business days. But, I'm in the eastern half of the U.S.
Posted 12/25/2018 7:48 PM (GMT 0)
LDN gave me neuropathy, I suspect it was a secondary autoimmune reaction. I'm the only person in Lyme land that I know of to have had an adverse reaction to it, just be aware that if your neuropathy flares up you should stop.
Posted 12/25/2018 11:18 PM (GMT 0)
Thanks for the replies.
Yes was 54 for 90 tabs.
Girlie... What was hurting with the ldn?
Posted 12/26/2018 4:27 AM (GMT 0)

RainyCloud said...
Sorry for my ignorance, what is Low Dose Naltrexone used for in terms of Lyme?

Some people take it for pain..

It is used for autoimmune diseases.
Posted 12/26/2018 4:31 AM (GMT 0)

acarined said...
LDN gave me neuropathy, I suspect it was a secondary autoimmune reaction. I'm the only person in Lyme land that I know of to have had an adverse reaction to it, just be aware that if your neuropathy flares up you should stop.

I had an adverse reaction as well.

This was pre diagnosis - I had stumbled across it when googling.
And thought it would help my pain.

At that time I had lots of pain but was able to sleep well - without the pain.
When I took the ldn - I started to wake up with pain during the night.
Posted 12/26/2018 4:32 AM (GMT 0)

6Hypnone said...
Thanks for the replies.
Yes was 54 for 90 tabs.
Girlie... What was hurting with the ldn?

I had joint pain, muscle pain, nerve pain, tailbone pain, ....
Posted 12/26/2018 4:58 AM (GMT 0)
LDN did nothing for me. Best thing to help with my nerve pain was gabapentin. Floods the body with more GABA which is a calming neurotransmitter. Many folks with lyme have out of whack neurotransmitters so gabapentin and others in its class are helpful.

Good luck with LDN.
Posted 12/26/2018 5:27 AM (GMT 0)
I was on gabapentin for bone pain b4 nerve pain started. At first seemed to help that, then got odd nerve sensations. But no idea what triggered what, if anything.
I'm s ared to start again bc ppl need to build up and up to get the same effect and if going off, there's a rebound plus your original Pain.
If that happened I wouidnt wanna be here anymore.
My LLND is against it due to those reasons. I'm Still scared to Try it.
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