Low Dose Naltrexone (Long Post)

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edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 4/25/2009 8:34 AM (GMT -7)   
Hi Friends,
I have been on a new Medication called Low Dose Naltrexone.  From prior posts you all know I have a triple fusion in the neck, low back disc bulges and severe nerve damage of both legs as an added complication Lymphedema left leg!  I have been dealing with Severe pain, headaches, spasm, burning and numbness since May of 2000.
I have been on many medications over the years, in addition to Homeopathics.  I had a severe reaction to Lyrica last year, because of that I can no longer take any formulation for Nerve pain.  I do acupuncture, massage, cold laser treatments, magnets etc.  I was evaluated for the Spinal Cord Stimulator but not a candidate!  Basically, any time I am told of a new treatment, I try it (as long as the possible side effects are minimal) for fear if I don't, it may have been the one thing that could have changed the pain level.
I worked for an M.D. who is also a Homeopath, I go for injections from him called Neural therapy which is like Trigger point injections but done with Procaine, B12 and Traumeel (a Homeopathic anti inflammatory,pain/nerve treatment) therefore, allowing me to get them as often as needed vs. Cortisone!  These have helped with spasm, headaches and numbness but I have to get them every 2 weeks!
Last month I went to see him and he told me about a medication Low Dose Naltrexone (LDN) which is high dose 50 mg. is used to treat drug addiction and alcoholism.  Studies have been done at a Low Dose 3.0 mg dosage to treat Crohn's and Fibromyalgia both of these conditions respond very well and very quickly.  He said they are also using it for Chronic Pain, it is compounded by a Pharmacy in NY and the only side effect may be nausea or fatigue.  I delayed taking it for 2 weeks after I rec'd the medicine because I was scared, I decided to call the Pharmacist and she said to start off by taking Benadryl with it to prevent the nausea/vomiting.  Finally, I started it on 3/28, it is a 1 pill at bedtime dosage, you continue to take your PM as prescribed.  Normally, when I get up in the morning I take a pain pill and then have a 2 hour ritual of heat/ice/rocking motion, anything I can do to get moving.  I normally go to bed at 10pm toss and turn all night and finally give up and get up at 4-4:30 EVERYDAY and feel like CRAP.
After 3 days on LDN, I was able to get up and move after only 30 minutes of my routine, I slept 2 solid hours before waking every hour like usual.  Day 5 I was able to function on 3 pain pills vs. 4. 
I have now been on LDN for 30 days, I am sleeping a little more comfortably, I wake up and am able to move around in 15 minutes, overall I don't feel as achy, I can't say the neck pain is better, but I have less spasm and the nerve pain is down 50%.  The swelling in the left leg is 75% better.  This is a MIRACLE in my world.  I find myself wanting to actually do things...I have been a hermit for the last 5 yrs.  Most days 3 pain pills keep me going others its 4.  According to this Dr. and the Pharmacist I am doing well and responding.  Even if this is the most relief I get it is well worth the $35 a month cost.
Also, I went to my PM Dr. for approval before sending for the medication, he was able to find the study info easily and was 100% on board and very hopeful by what he saw.
Its not a guarentee for everyone but the Pharmacist did tell me that you will know within 2-3 weeks if LDN will work for you.
People with Crohn's and Fibromyalgia have reported 100% relief in some cases!
Knowing that we all suffer pain from different causes and how debilitating this is to our lives I wanted to share this and I pray that you will look into this.  What if this gave you a small dose of relief, wouldn't that be wonderful?
I am hopeful for more improvement and as I've said if I hold where I am today, it is worth it.
XXOO
Patti

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 4/25/2009 12:21 PM (GMT -7)   

edt  This is interesting this medication is known as Narcan, it has been around for quite a while, we used to alway have it available on the Onco unit, as many cancer patients were on opioids and sometime when a patient was started on a new pain med we would keep the Narcan close by if the pain med started depressing the patients  breathing. We would administer the Narcan.  Narcan will completely reverse the effects of opioids, so it was a double edged sword because when you administered it, dosage was critical because if given to much the patient would immediately feel all of their pain! Which could really cause problems! It is often used for patients that OD on opioids.  I had no idea it was being used to control pain in certain circumstances! I sure hope this works for you!

 Good Luck

White Beard



  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

Post Edited (White Beard) : 4/25/2009 1:24:24 PM (GMT-6)


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/25/2009 8:15 PM (GMT -7)   
Wow! I am so glad that you are finally experiencing some relief, edt! Congratulations! I hope the longer you are on the medication, the more relief you will continue to get!
Just be careful not to take things too fast in light of your progress & overdo it -- now that you are feeling a little better!

hugs,
Skeye

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 4/25/2009 11:09 PM (GMT -7)   
White Beard,
Isn't the Naloxone is the one used in EMS to treat drug overdoses, naltrexone is the one that is used when they implant those stick things in patients for treatment of drug addiction. Or do I have things confused , as usual?
Thanks,
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


angel8
Regular Member


Date Joined Apr 2009
Total Posts : 109
   Posted 4/26/2009 4:19 AM (GMT -7)   

EDt I am surprised to say the least to see that you are in fact being given NArcan as a pain reliever. I have found that No studies have been done to substantiate that and just the opposite that it has been contraindicated in pain patients. Not to say it cant work for just look at methadone and sub-x.

Now the Naxolone is the one used in Opana and Talwin as a blocking agent has been studied and generally is found to work for pain in conjunction with the other properites in those meds,for example numorphon has turned out to be a Godsend for many.

You learn something new everyday around here.

Thanks for the education.


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 4/26/2009 7:13 AM (GMT -7)   
Hi Angel, Sandi, White Beard,
 
Do a google search on Low Dose Naltrexone (ReVia), you will find lots of info.....the studies are proving it is very effective at a 3-4.5 mg dosage for Crohn's, Fibromyalgia, Hashimotos thyroiditis, MS.  In addition to Chronic Pain current studies are in progress for use in Cancer, AIDS/HIV, there is also a book written and lots of patient testimonials!
I copied the info below from one of the LDN sites. 
low dose naltrexone. At less than a tenth the dose used for drug and alcohol abuse, LDN has some very different effects.
"It increases your endorphine supply, and that in turn strengthens your immune system, from which you get a host of wonderful outcomes, the basic one being that the disease no longer progresses!
 
I understand and appreciate all of your concerns, Chronic Pain results on this treatment are now being documented and results will be published shortly (if anyone knows research shortly can mean years)!  According to the Compounding Pharmacy in NY, there are thousands of Chronic Pain patients with successful outcomes in a very short time.  I voiced all of the concerns you have written and was assured the opposite is true at the Low Dose.  To date the only negative side effect I've experienced is fatigue around 4PM.
 
Skeye thanks for the warning about overdoing, it is so true for all of us CPrs, when we have a good day we tend to over do!!
 
I thought this was a definite, to share with all of my friends here at HW.
 
XXOO
Patti
 
 
 
 
 
 
 

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 4/26/2009 7:58 AM (GMT -7)   

mrsm123

Thank-you I was  wrong and  you are right, I am the one who had it reversed, they are both very similar in actual use but Naltrexone is a pure opioid antagonist it attenuates or completely blocks reversibly the effects of IV administered opioids it blocks the physical dependence to morphine or other opioid drugs! This medication use to be used and still is use for the treatment of alcohol dependence and to block some of the effects  opioids. But you know they are finding new and  different effective uses for so many of the older medications, now! Especially using them in lower dosage forms. Heck look at Mirapex and Requip for restless legs both of those medications were  Parkinsons medications but used in stronger doses for Parkinsons! So it is not surprising that they at finding new and useful ways of using this medication too. Anyway edt I sure hope it works well for you!

All my best to you edt

White Beard


  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


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 4/26/2009 3:57 PM (GMT -7)   
Thanks White Beard, I am very hopeful!!  Even the slightest improvement is miraculous to me, I will keep you posted....maybe some of you might want to bring this treatment to your PM Dr. and see what he thinks, mine is all for it!
Have a great rest of the weekend and Thanks!
XXOO
Patti

angel8
Regular Member


Date Joined Apr 2009
Total Posts : 109
   Posted 4/27/2009 3:16 AM (GMT -7)   

Thanks again for the info. It is certainly a plus when someone gets relief from anything.

I will keep my eyes and ears open for some of those studies as I would be interested to see the outcome.

So glad to see it working for you!


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 4/27/2009 5:17 AM (GMT -7)   

Thanks Angel, did you do a google search?  There is lots of info there on current studies and conditions!

XXOO
Patti


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 4/27/2009 6:37 AM (GMT -7)   
 


www.lowdosenaltrexone.org

Edt,  Thanks for the info.  I went to this site and there is a great deal of info about the uses and studies..Thanks again.


 I hate Boats!!!!
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/15 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night
                                                                    

 

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