Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


advertisement
Reply
 
Thread Tools Display Modes
Old 08-20-2016, 02:41 PM #1
numb numb is offline
Member
 
Join Date: Nov 2007
Posts: 159
15 yr Member
numb numb is offline
Member
 
Join Date: Nov 2007
Posts: 159
15 yr Member
Default low dose naltrexone

Hi,
Have anyone tried this medication before? Is it effective and at what dose? My pain doc just prescribed it, 50 mg starting with 1/2 tab and then advance to 1 tab per day. My RSD pain flares resulted from a bad LSB are not controlled and I need to try to some medications to calm the nerves. I have been on Lyrica 225 mg at bedtime for my pain for years and I am also using ibuprofen as needed. Oral steroid was used for a week which helped a bit but the improvement was reversed to some degree. Any other medications which would help.
Please advise and thanks so much!
numb
numb is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSD ME (06-10-2017)

advertisement
Old 08-20-2016, 08:02 PM #2
Littlepaw's Avatar
Littlepaw Littlepaw is offline
Senior Member
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Littlepaw Littlepaw is offline
Senior Member
Littlepaw's Avatar
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Default

Hello Numb,

I can't speak from personal experience on LDN though it certainly does seem promising. Not questioning your doctor but I just wanted to ask about your dose. You mentioned starting at 25mg. Most of the research I have seen on LDN for CRPS, fibromyalgia and MS is at a much, much lower dose (4.5 mg built up slowly) that has to be compounded.

I have no idea if the effect is the same at higher doses but it seems you might be more likely to experience side effects. If you have trouble with it maybe compounding at a lower dose would help.

I hope you find relief soon,
__________________
Littlepaw

Shine Your Bright Light
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
indigo (09-01-2016), PurpleFoot721 (08-27-2016), RSD ME (06-10-2017)
Old 08-20-2016, 08:16 PM #3
numb numb is offline
Member
 
Join Date: Nov 2007
Posts: 159
15 yr Member
numb numb is offline
Member
 
Join Date: Nov 2007
Posts: 159
15 yr Member
Default

Quote:
Originally Posted by Littlepaw View Post
Hello Numb,

I can't speak from personal experience on LDN though it certainly does seem promising. Not questioning your doctor but I just wanted to ask about your dose. You mentioned starting at 25mg. Most of the research I have seen on LDN for CRPS, fibromyalgia and MS is at a much, much lower dose (4.5 mg built up slowly) that has to be compounded.

I have no idea if the effect is the same at higher doses but it seems you might be more likely to experience side effects. If you have trouble with it maybe compounding at a lower dose would help.

I hope you find relief soon,
Thanks for your reply! The pharmacy said the standard dose is 50 mg for this drug. If I want to start at much lower dose, do I need to compound it. Very confused.
numb is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSD ME (06-10-2017)
Old 08-20-2016, 09:15 PM #4
Littlepaw's Avatar
Littlepaw Littlepaw is offline
Senior Member
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Littlepaw Littlepaw is offline
Senior Member
Littlepaw's Avatar
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Default

Hi Numb,

It is correct that 50mg is the lowest dose commercially manufactured. However, Low Dose Naltrexone is given in extremely small doses not available commercially and must be compounded. There is good information on it from CRPS pioneer and researcher Dr. Pradeep Chopra here.

Low Dose Naltrexone and chronic pain - Pradeep Chopra, MD | LDN Research Trust - Low Dose Naltrexone

It discusses compounding and dosage at the end of the article. Dr. Chopra does mention potential for liver problems at doses of 50mg and higher so not sure that would be best for you long term. LDN takes a while to work its magic so it is not something you'd take for just a brief time.

Hope this helps.
__________________
Littlepaw

Shine Your Bright Light
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluesfan (08-22-2016), PurpleFoot721 (08-27-2016), RSD ME (06-10-2017)
Old 08-21-2016, 08:21 AM #5
BioBased BioBased is offline
Member
 
Join Date: Jun 2015
Posts: 630
8 yr Member
BioBased BioBased is offline
Member
 
Join Date: Jun 2015
Posts: 630
8 yr Member
Default

Numb,

Dudley's Low Dose Naltrexone Sites

The protocol is start low and go slow.

Side Effects and Dosing of LDN - Dudley's Low Dose Naltrexone Sites

You can take your 50mg pill, put it in 50mgs of distilled water, when it melts shake the container. Tilt the jar to allow the sediment to collect on the side bottom of the jar. Don't shake again. I transfer the clear LDN I just made this way into a clean container, pouring it out carefully so as not to disturb the sediment.
How to Make LDN at Home | River News Desk

I use an eye dropper measure to siphon up the amount of LDN I am taking. By mixing it myself I can more easily change the dose. I take mine in a swig of pineapple juice which cuts the bitterness.

How to LOW DOSE Naltrexone(C) (LDN) - YouTube

I am going to start LDN again on Monday. I will start at 2mgs and then build up to 4.5mgs. I also skip a day, other people I know skip 2 days a week.

Facebook has an LDN site called Got Endorphins, which has loads of information.
BioBased is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluesfan (08-22-2016), PurpleFoot721 (08-27-2016), RSD ME (06-10-2017)
Old 08-21-2016, 12:12 PM #6
Becca71's Avatar
Becca71 Becca71 is offline
Member
 
Join Date: Mar 2016
Location: CA
Posts: 204
8 yr Member
Becca71 Becca71 is offline
Member
Becca71's Avatar
 
Join Date: Mar 2016
Location: CA
Posts: 204
8 yr Member
Default

WOW> I about had a heart attack when I read what your doc wrote. By definition that isn't LOW dose naltrexone.
I don't know where you are and what kind of doctor you are seeing. It might be worth a second opinion. LDN (as others mentioned) must be compounded. It has been used successfully by MS patients (my husband did for years) and now is being used in CRPS though I believe it is still considered trial or experimental so to speak (I'm not using the right words).
Anyway, LDN is very safe (up to 4/4.5 mgs) with little to no side effects which is why many doctors are willing to prescribe it. However you cannot take with any opioid pain relievers.
Becca71 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
PurpleFoot721 (08-27-2016), RSD ME (06-10-2017)
Old 08-21-2016, 02:57 PM #7
BioBased BioBased is offline
Member
 
Join Date: Jun 2015
Posts: 630
8 yr Member
BioBased BioBased is offline
Member
 
Join Date: Jun 2015
Posts: 630
8 yr Member
Default

Numb,

Just want to add that the standard dose is 4.5 mgs, with outlier variations of 2.5-12, for CRPS.

I started taking LDN in June 2015 with great results. Because it helped so much I was able to stop taking neurontin in the winter and the best part is I did not need to take other meds. I think LDN is a miracle. But what helped me to regain my ability to walk was the addition of Aqua PT. I believe you need both LDN and Aqua therapy to overcome RSD.

Last year at this time I spent most of my day huddled under an electric blanket. Walking to the car on crutches exhausted me. Regular PT helped me, but was torture. In the past I had floppy ligaments, foot drop, a twisted foot, excessive color changes, allodynia, I slept with a stool to keep the blanket weight off my feet. I could not stand in the shower. Just about anything could knock me over. My pain was off the charts. I could never get warm. I could not drive, shop, read, think.

I am not 100% better, my CRPS is now called mild, so it hasn't gone, but it's better. I still cannot hop, skip, jump or run on land, but I can in the water. I still can fall over if I step on a crumb, but my balance in general is much better, I am able to sleep most nights without the stool, I can stand in the shower, not long, but for a few minutes and I can get in and out of the tub without help. I can walk around the supermarket with a grocery cart. I can carry small bags into the house one at a time and drive short distances. I can wear shoes again, mostly okabashis, not fashionable, but better than no shoes before. I can open heavy doors while carrying my purse and cane.
BioBased is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluesfan (08-22-2016), PurpleFoot721 (08-27-2016), RSD ME (06-10-2017), shelbie4u (04-01-2017)
Old 08-21-2016, 04:17 PM #8
numb numb is offline
Member
 
Join Date: Nov 2007
Posts: 159
15 yr Member
numb numb is offline
Member
 
Join Date: Nov 2007
Posts: 159
15 yr Member
Default

Quote:
Originally Posted by BioBased View Post
Numb,

Just want to add that the standard dose is 4.5 mgs, with outlier variations of 2.5-12, for CRPS.

I started taking LDN in June 2015 with great results. Because it helped so much I was able to stop taking neurontin in the winter and the best part is I did not need to take other meds. I think LDN is a miracle. But what helped me to regain my ability to walk was the addition of Aqua PT. I believe you need both LDN and Aqua therapy to overcome RSD.

Last year at this time I spent most of my day huddled under an electric blanket. Walking to the car on crutches exhausted me. Regular PT helped me, but was torture. In the past I had floppy ligaments, foot drop, a twisted foot, excessive color changes, allodynia, I slept with a stool to keep the blanket weight off my feet. I could not stand in the shower. Just about anything could knock me over. My pain was off the charts. I could never get warm. I could not drive, shop, read, think.

I am not 100% better, my CRPS is now called mild, so it hasn't gone, but it's better. I still cannot hop, skip, jump or run on land, but I can in the water. I still can fall over if I step on a crumb, but my balance in general is much better, I am able to sleep most nights without the stool, I can stand in the shower, not long, but for a few minutes and I can get in and out of the tub without help. I can walk around the supermarket with a grocery cart. I can carry small bags into the house one at a time and drive short distances. I can wear shoes again, mostly okabashis, not fashionable, but better than no shoes before. I can open heavy doors while carrying my purse and cane.
Thanks for your reply! Your feedback was so encouraging. I have been feeling down at times when I feel I am running out of options to fight my RSD pain. Glad to hear that LDN and aqua therapy can reduce your pain from severe to mild level. May I ask you some questions. Did you try the blocks before you try the LDN and aqua therapy? When you said Aqua therapy? Do you mean water (pool)therapy? Warm water with exercises. Am I correct?
I would really appreciate your feedback.
numb is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSD ME (06-10-2017)
Old 08-21-2016, 05:13 PM #9
numb numb is offline
Member
 
Join Date: Nov 2007
Posts: 159
15 yr Member
numb numb is offline
Member
 
Join Date: Nov 2007
Posts: 159
15 yr Member
Default

Quote:
Originally Posted by Littlepaw View Post
Hello Numb,

I can't speak from personal experience on LDN though it certainly does seem promising. Not questioning your doctor but I just wanted to ask about your dose. You mentioned starting at 25mg. Most of the research I have seen on LDN for CRPS, fibromyalgia and MS is at a much, much lower dose (4.5 mg built up slowly) that has to be compounded.

I have no idea if the effect is the same at higher doses but it seems you might be more likely to experience side effects. If you have trouble with it maybe compounding at a lower dose would help.

I hope you find relief soon,
I have a feeling my PM doc is not familiar with the low dose. I am so glad to come to this site and ask questions.
numb is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSD ME (06-10-2017)
Old 08-21-2016, 05:21 PM #10
numb numb is offline
Member
 
Join Date: Nov 2007
Posts: 159
15 yr Member
numb numb is offline
Member
 
Join Date: Nov 2007
Posts: 159
15 yr Member
Default

Quote:
Originally Posted by BioBased View Post
Numb,

Dudley's Low Dose Naltrexone Sites

The protocol is start low and go slow.

Side Effects and Dosing of LDN - Dudley's Low Dose Naltrexone Sites

You can take your 50mg pill, put it in 50mgs of distilled water, when it melts shake the container. Tilt the jar to allow the sediment to collect on the side bottom of the jar. Don't shake again. I transfer the clear LDN I just made this way into a clean container, pouring it out carefully so as not to disturb the sediment.
How to Make LDN at Home | River News Desk

I use an eye dropper measure to siphon up the amount of LDN I am taking. By mixing it myself I can more easily change the dose. I take mine in a swig of pineapple juice which cuts the bitterness.

How to LOW DOSE Naltrexone(C) (LDN) - YouTube

I am going to start LDN again on Monday. I will start at 2mgs and then build up to 4.5mgs. I also skip a day, other people I know skip 2 days a week.

Facebook has an LDN site called Got Endorphins, which has loads of information.
HI,
Great info! I have some questions about mixing it. Do I have to keep the mixture in fridge and how long I can keep it in there? Is my interpretation correct? 50 ml distill water mix with one 50 mg tablet. 1 ml mixture=1 mg tab.
At first, it seems so difficult to mix it myself. But after seeing the video, it is so much easier. Thanks. I think i will feel confident to give it a try.
Numb.
numb is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSD ME (06-10-2017)
Reply

Tags
dose, ibuprofen, medications, pain, tab

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Low Dose Naltrexone wildcovey Peripheral Neuropathy 14 03-16-2016 12:42 PM
Low Dose Naltrexone??? betsykk Reflex Sympathetic Dystrophy (RSD and CRPS) 9 10-23-2012 08:59 AM
Low dose naltrexone Kimmidwife Fibromyalgia and Chronic Fatigue 6 10-14-2012 09:07 PM
Low Dose Naltrexone joojee22 Autoimmune Diseases 11 01-21-2012 10:24 AM
Low Dose Naltrexone rose_thorn98 Chronic Pain 15 11-24-2011 02:57 AM


All times are GMT -5. The time now is 03:45 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.