Update on LDN (Low Dose Naltrexone)

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edt
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Date Joined Dec 2008
Total Posts : 773
   Posted 9/20/2009 8:10 AM (GMT -7)   
Hi Friends,
 
You may remember that in March I was told about LDN (Low Dose Naltrexone) by the Dr. I used to work for!  After much thought, research and discussion I decided "why not" and started on the medication at 3.0 mg.   This is a drug that used at high dose 50 mg. is given to Drug addicts and Alcholics in treatment.
Studies have been done and it is used quite successfully for Fibromyalgia, Crohns, MS and recently CP has been added to the list.  CP results are being documented at the present time.
 
I started on it in March and after a few weeks did begin to notice relief, the dosage is 1 at bedtime.  The cost is about $38 a month. 
 
I was enjoying SOME relief of the neck, low back and leg pain.  I was able to cut down PM dose by 1-2 pills depending on the day. 
 
In June I fell and injured yet again the low back and have had constant muscle spasm on the left side since.  With the latest injury I began to feel the LDN was not doing what I hoped.  I spoke with my Dr. and the Pharmacist and found out that the LDN can be taken up to 6.0 mg. dosage.  The next recommended dose for me would be 4.5 mg.   Coming from the Homeopathic field I asked the Pharmacist why would I want to jump from 3.0 to 4.5, why couldn't I go up to 3.5 mg. instead giving me some room to advance slowly before giving up on this treatment.  She and my Dr. thought that was a great idea so on Aug 1 I started on 3.5 mg.   2 weeks into this new dosage has been amazing for me, although I still have pain it is so low at times that I am actually able to do things that have been out of my life for over 10 yrs.  Grocery shopping alone (of course my husband is here ready to unload the car when I get home), blow my hair dry without taking several breaks, stand and cook a meal, put dishes away AND increased energy allowing me to meet and enjoy time with my friends.
If you read the LDN site info, it says that you must stop your Pain meds....I was told by the Pharmacist that, that is not true with CP, it is successful IF you are able to cut your dosage and begin to gain some function in your life.  THAT is where I am at, some days are great and some days are good, some are still bad BUT overall my quality of life is so much better and with that my attitude as well!
 
The biggest change that occured and I am most grateful for is I am able to sleep through the night, instead of tossing and turning and getting up feeling worse then when I went to bed.  Its a whole different life being able to REST at night.  I still get up at 4-4:30AM but I am rested and refreshed.
 
Just had to share some good news with all of you!  Now, if I can manage to stay on my 2 feet without falling for a while, I think I can be very happy being where I am right now!
 
XXOO
Patti
 
 
 

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 9/20/2009 3:16 PM (GMT -7)   
Patti
 
That is Great news! I am happy that it is working so well for you!  We all have our down days once in awhile, so that is to be expected! But it sounds like you are getting the right combination, and it is all about trying to get our normal pain free life back as much as we possibly can, or at least some resemblance of that anyway!
 
Thanks for sharing the Good News with us! yeah
 
White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 9/20/2009 8:34 PM (GMT -7)   
Patti,
Thanks for the update - and I'm glad it continues to help out. I know I was one of the people who asked back when you first posted.

I'm always glad to see a promising addition to our treatment tool box!

PaLady

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 9/20/2009 8:49 PM (GMT -7)   

Thank you Whitebeard and PALady your support and concern is so appreciated!!

XXOO


mickey138
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 10/29/2009 5:57 AM (GMT -7)   
After Remicade stopped working for me, I joined Dr. Jill Smith's Penn State Hershey Medical Center low dose naltrexone (LDN) clinical trial for adult Crohn's sufferers. After six months of LDN (4.5 mg) therapy I went from taking oxycodone four times a day to taking an occasional Tylenol for minor discomfort. LDN has been a blessing for me. :-)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 10/29/2009 7:42 AM (GMT -7)   
I am very happy to hear this.  I really look forward to your testimony on this drug.  Thank you so much for posting.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/29/2009 1:15 PM (GMT -7)   
Mickey138,
Welcome to the chronic pain forum of Healing Well. It's great you found a clinical trial that works for you! I also appreciate your posting and look forward to learning more.

Are you taking it just for Crohn's or do you have other CP issues?

BTW, get some chocolate while you're in Hershey!! LOL

PaLady

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 10/29/2009 8:20 PM (GMT -7)   

Hi Mickey,

Welcome, I am so glad to hear of your results with LDN! 

I had read some studies that LDN is quite successful for Crohns. 

As I posted I've been on it since March and I am so thankful I decided to give it a try.  Last week I met an old patient of mine, she is 39 and has severe RA her Dr. (my old boss) started her on it 3 weeks ago and she feels the LDN is helping her pain level.  I believe we will see alot more uses for LDN in the near future. 

Please keep us posted on your progress!

XXOO
Patti


mickey138
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 10/29/2009 10:31 PM (GMT -7)   
CP always has a cause. In my case it was Crohn's coupled with arthritis. In my wife's case it was arthritis coupled with sciatica. In both of our cases LDN changed us from semi-invalids to functional human beings. Part of my clinical trial involved weaning off LDN for two weeks and then going two more weeks without it. After the four weeks were over, I was in serious pain and discomfort. It took four more weeks on LDN before my pain was back under control. LDN may not be the ultimate cure for CP, but I'll continue to take it until something better comes along. yeah

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 10/29/2009 11:27 PM (GMT -7)   
This sounds amazing, I've never heard of LDN. Tell me more? Its used for drug addicts like methadone? Or used like an alternative pain killer? Muscle relaxant? Why isn't it being offered to us all for trials, we'd be a good group of mixed pain sites to try it out on.
I'm joking of course, but I'm going to ask about it. Golitho

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 10/30/2009 6:43 AM (GMT -7)   

Golitho,

You can do your own search on Google.  I worked for an M.D. who is also a Homeopath for 21 yrs.  I am lucky because he is always looking for something to help my situation!  I found out through him and before I started on the LDN discussed it with my PMD.  He had never heard of it and as soon as I told him went to his computer and looked at some of the studies.  Since my results he has started a few other people on LDN.  I saw him on Wednesday and he said it seems to be working for the patients he has prescribed it for.

Do your own research, I was told no side effects except fatigue...which lasted about 10 days for me.  Like Mickey I went off it for 2 weeks to prove to myself and Dr's  that it was working for me.  Am I pain free no but I am able to do things I couldn't 8 months ago.

The cost is low in comparison to other things we take and you know quickly if it will help you!  I noticed relief within days of starting it, my 1st relief was being able to sleep through the night without waking every hour from pain. 

I am still on Norco but dosage is down to 1 or 2 a day......MIRACLE!  Most times advil and Homeopathics is sufficient!

XXOO
Patti

 

P.S. Drug Addicts and Alcoholics are given this at a 50 mg. dosage.....LDN starts as low as 1 mg., for CP dosage can go as high as 6 mg.  I started at 3 mg and am now on 3.5 for the last 60 days, if this dose stops working they will increase it at .5 increments. 


mickey138
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 10/30/2009 7:00 AM (GMT -7)   
LDN is a cheap, generic drug and no drug company is willing to fund clinical trials to approve a drug which may undercut its own expensive branded drugs. For more information, Google low-dose-naltrexone and your screen will fill with useful information. Since there is no drug industry support for LDN, a grass-roots effort is needed to bring it to national attention. That's why I and many other successful LDN users blog about it whenever we can.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 10/30/2009 7:13 AM (GMT -7)   
I have not tried LDN.  I have done a lot of that internet research.  There are studies being funded.  One is by the MS society.  LDN has been around a long long time with MS.  It has been used off label for more than thirty years.  As of now, it shows promise to reduce symptoms but has proven no use in slowing down the incurable progression of MS. 
 
There is real value in reduction of symptoms however.  MSers suffer and could use a decent quality of life type med.  This is where the drug studies in MS are headed as well as safety and overall efficacy. 
 
 
http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=148
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/30/2009 11:48 AM (GMT -7)   
Thanks to all of you for this thread. Keep it going as each of you learns more!

PaLady
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