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jillmp
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/1/2009 5:53 PM (GMT -7)   
Hi! I am a new member, and I have had non-diabetic peripheral neuropathy for over 20 years. I live in extreme pain 24/7. I was wondering if anyone with pn has tried low dose naltrexone. I am seeing my neurologist this week, sand would like to suggest this to him.

Post Edited By Moderator (Chutz) : 5/1/2009 11:40:26 PM (GMT-6)


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 5/1/2009 7:50 PM (GMT -7)   
jillmp

First off Welcome to the Healing Well Chronic Pain forum, I am sorry you have reason to be here, but I am glad that you have found us! You just won't find a better bunch of caring, compasionate, people anywhere so you have definitely come to the right place!
!
There is a thread on low does naltrexone by edt, and there is also another thread on it that was posted earlier! So it appears you are not alone with this treament, so you might try reading some of those and I am sure that edt, will come along and give you some helpful support on this!

Good Luck to You and again Welcome to the forum!

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


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 5/1/2009 10:51 PM (GMT -7)   
Hi jillmp!

First off I want to welcome you to our CP family!! And, I edited your post by adding a subject line. That way more people will come by and help you with your question.

I have a tiny bit of neuropathy and mine IS from diabetes. I don't have severe pain from it tho. My main pain is from fibromyalgia. I have tried many neuropathy medications tho to try to help with pain control for the fibro, but to no avail. I wish I had great news on that one.

I don't have any experience with this medication and have only read briefly some online reports of clinical trials. My feeling is that it surely can't hurt to ask. I am fortunate that I have a doc who is open to suggestions if they are reasonable for me. I just ask. tell him I have done some reading on ______ (fill in the blank) and wondered if it was something that would help me or be appropriate in my case. It's that easy. Then see what he has to say. You might print out some of the clinical trials you've found online and take them along to show him what you have found. Might impress him that you are very serious about this.

I do wish you luck and please let us know how it goes. One of the things they are drying LDN (low dose naltrexone) for is fibromyalgia so I am very interested in the success of this medication.

Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 5/2/2009 5:57 AM (GMT -7)   
Welcome to the forum. We are glad you joined us. Many wonderful people on this forum, so stick around, keep posting and let us get to know you and you get to know us.

Best wishes for a low pain day!!

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 5/2/2009 6:50 AM (GMT -7)   
I have chronic nerve pain from MS.  I have heard good things about LDN and pain management.  The only real problem I have heard about it is that you cannot take any narcotic/opioids while you are taking it.  If LDN doesn't manage your pain, you can't take many other pain meds while it is in your system.  You might want to look into a back up med plan if it doens't work for you.  I would hate to see you having to gut it out while the LDN washes out.  Good luck and please let us know.  I am interested.

Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/2/2009 7:35 AM (GMT -7)   

Hi Jillmp and WELCOME!!!

 Gretchen, I have just recently posted my results on LDN.  I think you may have been misinformed about LDN, you can stay on pain meds!  It is my understanding that at the regular 50 mg. dosage you can not stay on Opioids, this is the dosage used for Drug/Alcohol addiction.  LDN is 3.0 or 4.5 mg.  I am in contact with the Pharmacist at Park-Irmat Pharmacy in NY, they are more then willing to answer all of your questions.  I also read on the LDN site that you should stop PM's, not so according to info received from them.  Hopefully, that will happen but if it doesn't and the pain level is reduced then it is considered a success! 

MS, Crohn's and Fibromyalgia (among others) LDN trials have proven to be 100% successful in some cases!   I have non Diabetic Peripheral Neuropathy both legs/feet, assorted areas of nerve damage from triple rupture of CS with Fusion, there are disc bulges of LS but no real apparent cause of the nerve damage. Normal pain level is between 8-10+ daily, since starting LDN I am functioning between 5-8, what a difference...do I still experience level 10 yes but it is not constant.

See my post Update Low Dose Naltrexone! 

XXOO
Patti 


jillmp
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/2/2009 10:40 AM (GMT -7)   
Thank you all for your posts. I emailed some studies to my neuro last night, and he responded with 'he will not prescribe it, and would only suggest an immunologist who believes in the trials.' If I hadn't had over 20 years into this thing, I'd go see a new neuro. But I don't have the heart, the time, the patience to start at square one again with someone new. He used to be so open to new things, which is why I've stayed with him. He's never had me on any narcs for pain, which I think is a good thing. But things have changed over the last 3 months and the pain has worsened for some reason. It's in my feet, legs, hands, arms, back, and sometimes my face. When it started all those years ago, it was just in my toes. SAnd I've been tested for everything, and then some.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 5/2/2009 10:47 AM (GMT -7)   
Ah good to know about the revised narcotic/opoids with LDN!  That was a major factor so many.  I think this drug will conintue to garner much attention.  I am waiting and watching and hoping for the best.

Patti,

Do you have any links to the MS studies?  I am not aware of any reliable double blind studies that have shown anything more than a mild decrease in symptoms.  I was told that LDN studies were inconclusive for progression management.  Despite that I am very hopeful that LDN can be used to manage symptoms.  Let me know if you can give me a link. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

Post Edited (Gretchen1) : 5/2/2009 11:50:13 AM (GMT-6)


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 5/2/2009 12:10 PM (GMT -7)   
My experience may not be of any value to you, but I'll throw it out there.

My pain is Peripheral Neuropathy from Diabetes.

I STARTED at pain level of 10 in my feet/legs up to my knees.

The nice thing was that my PCP gave me the catalog of PM clinics in the area and told me to 'pick one' and I picked the best one, luckily.

The doctor I chose tried me out on many different medications, tried 3 nerve blocks, just about anything I was willing to try. He didn't refuse anything; his attitude was that it all provided input to come to the right final decision. I myself stayed away from Morphine and Methadone, because of the stories I had heard - mainly about addiction.

Well, of course, NOTHING worked. Either they worked enough for me to tell they were doing something, but I couldn't tell what, or they worked not at all and the pain level stayed the same. Even the nerve blocks; they provided NO relief.

It finally came down to implants or Methadone. All along he had suggested Methadone as an option, so I took that option at this point. He prescribed Methadone, with Morphine as BreakThrough medication.

This combination provided more relief than anything but Oxycodone. Problem with the Oxycodone is that it took 1 hour to start providing pain relief, and provided relief for almost exactly 2 hours. This, our of the 6-8 hours it is supposed to provide relief. But WOWSER! did it make me feel good; I can understand addiction to that one, and told my PM that it probably shouldn't be something I got a lot prescribed to me.

And that ruled out OxyContin, as well, since it is a long term OxyCodone.

Therefore, my PM gave me an option to go with an implant, but otherwise I get Methadone + Morphine or I get nothing. I am at the end of all options for pain relief as far as he is concerned.

I take Methadone 20mg 2xDaily and 10mg 1xDaily, and Morphine up to every 4 hours/day for breakthrough.

And then live with a 4-5 pain level consistently. Lately, breakthroughs between 8 and 9 are somewhat more common.
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 5/2/2009 1:43 PM (GMT -7)   
Wow!  Tony that sounds awful!  I love your dogs!!!  Can I send my two to you for training?

Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/2/2009 2:52 PM (GMT -7)   

Gretchen,

Do a google search for Low Dose Naltrexone, the 1st site that pops up is the actual site, you will find lots of information that should help answer your questions.  I believe they prefer we not post links on HW. 

Jillmp I understand your hesitation in establishing with a new Dr.....but if you feel stongly that it may help you, why not see if there is someone you can contact on the LDN site....or print some of the research to take with you for your next appointment, maybe if he sees it in print, he may change his mind?

XXOO
Patti 

 


jillmp
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/2/2009 6:22 PM (GMT -7)   
Patti, younmust have gotten my 'esp' waves, 'cause I did that last night! I'm just so frustrated. Does anyone with pn have swelling associated with it? My feet are so swollen that I can't wear any of my summer sandles. :(

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/2/2009 10:29 PM (GMT -7)   

Jillmp,

I also have swelling of the feet from PN, more on the left + lymphaedema of the left leg, this is better from the LDN...I wear tennis shoes most of the time because the pressure of the tied laces does help to keep the swelling down.  The only sandals I can wear are the Crocs flip flops, they have enough support and cushion to walk in, they are roomy so even when the swelling is bad they are wide enough....don't do this often though because the Phoenix heat seems to make the swelling worse, my toes look like snausages after an hour or so. I also have Jobst stockings, but the pressure makes the nerves flare!  So as annoying as it is, I stick with my tennis shoes most times.

XXOO
Patti


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 5/3/2009 6:56 PM (GMT -7)   

Hey Pattie/edt,

Thanks I found it right away.  It is a huge site!  I did find three study results.  Unfortunately, not real good news for MS.  It showed what I already know...it seems to help some symptoms.  It is not showing much promise as a progression treatment.  I appreciate the info very much!

jillmp,

You sound miserable!!  I am very sorry.  I hope you get some relief real soon!!  Please keep us posted.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/3/2009 7:42 PM (GMT -7)   
Hi jillmp,

I just wanted to welcome you to the forum! I haven't been doing so well myself lately, so I haven't been posting as regularly, as reading is an effort for me. I can't help you re: LDN, but it looks like Patti has given you some good suggestions & I'm sure she'd be more than willing to talk to you about her experience with it. Have you ever seen or thought of seeing a pain management specialist? They may be more knowledgeable about this treatment & other options. I wish you the best of luck with your research. Keep posting with us, this is a wonderfully supportive group!

Skeye

cshelp
Regular Member


Date Joined Mar 2009
Total Posts : 96
   Posted 5/3/2009 8:25 PM (GMT -7)   
Hi jillmp,


Welcome to the forum, its a wonderful site for support. I just found this site 2 months ago and it has helped me. Good luck and dont give up, life is too short to allow pain control you.

cshelp

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/4/2009 1:37 AM (GMT -7)   
Jillmp, I also want to welcome you to this forum that is a Godsend for many of us. This is a good place to get ideas and support even though we are not doctors. Most of us have seen enough of them that we have educated advise but always remember that each of us respond differently to medications and one persons results are not the same for another. You seem to have a good understanding and will probably also be able to pass on much to the rest of us as well. I look forward, as others will, to continue to encourage and be encouraged. Blessings! 

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 5/4/2009 3:09 AM (GMT -7)   
Jillmp,

Welcome to the forum. It's my home within my home. There are some nice
people here.

I will have to look up periperal neuropathy. I don't know exactly what's wrong with
me. I don't even know if I have Diabetes. I was very close to it seven years ago.
(What the Dr. said) I haven't followed up. I've been roaming around like a gypsy
and don't have a regular doctor at this time.

As Skeye said, you might benefit from pain management.

Pamela

anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 5/4/2009 6:10 AM (GMT -7)   
Jillmp, I also would like to welcome you to the forum. I think that you will really enjoy it here. I know that I do . Everyone here seems so caring,compassionate and understanding. It is a great place to be.
I hope that your appt. with the neuro. goes well. Seeking pain management may be an option for you. I am sorry that you are in so much pain. My brother also has neuropathy,but his is from advancing diabetes. I hear him talk about how much pain he is in as well. He has an appt. with pain management in a couple of weeks to see if he can get some relief.
Good luck to you.Please keep us posted on how you are doing.
Anice
Anice

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 5/4/2009 11:24 PM (GMT -7)   
Hi Jillmp:

I just wanted to say hello & welcome too. I'm sorry you are in pain, and I hope that you are able to get some relief soon.

Lorie

jillmp
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/5/2009 4:27 AM (GMT -7)   
Thank you all for your posts, and concern for me. This is one awesome site.
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