Low Dose Naltrexone anyone?

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 9/11/2008 9:06 PM (GMT -6)   
Hi--
Just wondered if anyone had any experience with Low Dose Naltrexone.  Some of the information about it seems promising and I've found some links to Mayo. I just wondered if for some of us it might be an alternative to steroids or if it is something you take with steroids. I know you can't take narcotics with it. I didn't know if it was something flaky or something that really is coming on to the scene in a possibly more mainstream way.  Any info or personal accounts would be interesting. I'm trying to avoid going on daily steroids since I'm about two hundred pounds now and craving food in a horrible way.
 
Thanks in advance. If there is an old thread, if you can refer me that'd be great.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/12/2008 8:26 PM (GMT -6)   
 
I hope at least one or two of these will be helpful.   Lots of talk about in old posts on the Crohn's forum . . . but I haven't followed the posts. 
 
Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 9/13/2008 11:02 AM (GMT -6)   

Marji, there have been several discussions about it here and one of our members, canuckgirl, seems to have had good results with it.  I am interested in it, but it turns out you have to be off a lot of your regular meds to take it and that made me kind of nervous.  There does seem to be a lot of promising results with this med for several illnesses.

Here are the links to some of the discussions here:

http://www.healingwell.com/community/default.aspx?f=29&m=1040737&g=1044070#m1044070

http://www.healingwell.com/community/default.aspx?f=29&m=1105131&g=1106124#m1106124

http://www.healingwell.com/community/default.aspx?f=29&m=1046068&g=1046182#m1046182


Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 9/14/2008 5:43 PM (GMT -6)   
Thanks, Hippi and Rosie, I checked out Rosie's links and there was a lot of discussion. I don't exactly understand how this differs from taking a narcotic, except that you don't get the pleasant effects until the morning after. I have read more about it before I sacrifice how good I feel right now to try something. But I'm afraid of daily steroids and probably will end up posting some on that. Like does everyone get the weight gain and hairness (I know I do on a large taper), but if you need them, do you get it, like for people who take fludrocortisone and prednisone in low doses every day. And are natural steroids better. Maybe you guys can answer this? It's supposed to make me better, fix cushings and all that I naturally have and was never dx until recently. And the adrenals.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


Deeldn
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 9/18/2008 7:08 PM (GMT -6)   
Low dose naltrexone is a life saver and anyone considering it should be on it. I have been on it for almost 2 years for cancer but have many friends on it for lupus, crohns, Parkinson's . All are wonderfully happy about being informed about LDN and trying to tell others. My mom is on it for rhuematoid arthritis and my husband takes it as a preventative.

http://www.lowdosenaltrexone.org/

It is safe, non toxic, no side effects and only 1 little pill every night. Since no further convention treatment could possibly save me, I was lucky to have been told about LDN. It has saved my life that's for sure.

So anyone with Lupus or other diseases should think about LDN without any nasty effects. Some doctors don't know about it so are unwilling to prescribe it but we have lists of prescribing doctors to aid those in need. The list is growing to our efforts to educate health professionals about Low dose nalrexone.

Grateful to be here typing this,

Dee


Post edited to remove link. See 4. No advertising or links to advertising

Post Edited By Moderator (AlwaysRosie) : 9/18/2008 6:13:21 PM (GMT-6)


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/18/2008 7:14 PM (GMT -6)   
Welcome to the forum Dee. You can email the forum administrator at admin@healingwell.com to get permission to post your second link.

It's great to hear that LDN has helped you so much!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Chico
New Member


Date Joined Feb 2007
Total Posts : 3
   Posted 12/1/2008 12:10 PM (GMT -6)   
Hi everyone, I just recently read something about LDN and am looking for more info. I pay for three newsletters and on the last one from Dr. Julian Whitaker read LDN has been around for close to 20 years, is very inexpensive (a reason most doctors don't know about it), and was approved by the FDA as an aid for drug and alcohol rehab. Dr Whitaker mentions in his letter an LDN convention which happen just this year. He mentions Fybromialgia, Pancreatic Cancer, among others. I'm looking to understand this because I really trust this guy. He's been fighting the FDA for years. Through him I learned about the FDA fight against DR Bursynski. I do this not for me now but for people I love and to be ready if I ever have to fight some of these horrible diseases. I know if I ever have a problem, Dr Whitaker is one of my many options. Hi mentions a Dr Behari as the spearheader on LDN. Also he mentions the story of a woman who thanks to LDN was spared from a certain death and after she beat the illness she walked to the CA state capital to convince legistators about the importance of promoting LDN. And this is what I'm looking for. The story of such lady.
Hope this info helps.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/21/2009 7:45 AM (GMT -6)   
Bump!!! Up you go for Puccini !!!!

Blessings!

puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 5/21/2009 8:28 AM (GMT -6)   
Thanks Rosie, I've been looking into to LDN and to be completely honest I'm not ready to give up the improvement I've made on my current "cocktail" to try something that doesn't seem to have much specific Lupus trials. I think it's something we should all keep an eye on, but be cautious with. Thanks again.

Jennifer

PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Prednisone 15mg daily added 03/09.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


mickey138
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 10/29/2009 8:05 AM (GMT -6)   
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. :-)

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 11/3/2009 8:00 PM (GMT -6)   
Thanks Micky, my mom has Ulcerative Colitis and extreme pain and is older and could not tolerate Imuran or MTX and they are at wits end. I forgot about this post but glad to hear it may be an option for gi AI diseases, she gets really bad and just can't tolerate the cancer meds.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


spooglesmom
Regular Member


Date Joined Oct 2009
Total Posts : 36
   Posted 11/19/2009 10:12 PM (GMT -6)   
Mickey 138-
I have read the Penn state study with great interest. Did you stop all other meds or were you on some while taking the LDN. What do you take now? I'm so glad it has been positive for you. An integrative dr. prescribed it for my daughter's uc, but I am scared to give it to her when she is on other meds. She had her last Remicade 10/23 and we are thinking she is beginning to be a non-responder.

YAL
New Member


Date Joined Jan 2010
Total Posts : 1
   Posted 1/25/2010 3:03 PM (GMT -6)   
mickey138 said...
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. :-)


Mickey,

Very curious about this post. As I understand it, LDN temporarily blocks the effects of opiates like oxycodone. If you were taking oxy four times a day, didn't you immediately go into at least temporary withdrawal as soon as you took your dose of LDN? Everything I've read about LDN states unequivocally that you must stop all opiate meds before beginning it. It sounds like you didn't stop until after being on LDN for a few months. Can you clarify this please?

Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 1/29/2010 9:10 AM (GMT -6)   
just thought I'd chime in with my 2 cents. I was on it for 6 months and I saw no benefit, however, at the same time my rheumy put be on neurontin. I had nothing but really bad side effects from the neurontin so it is possible that the lack of benefit i felt was due to that.
Marie- 45, mother of 6 & grandmother of 2



"All we have to decide is what to do with the time that is given us."" ~ Gandalf

Post Edited (spinningmawmaw) : 1/29/2010 7:14:28 AM (GMT-7)


comedybob
Regular Member


Date Joined Jan 2010
Total Posts : 230
   Posted 5/12/2010 12:12 PM (GMT -6)   
any new results anyone?

bob b
13 year old son diagnosed at 9,
one month of pred at beginning 
2 years of immuran ineffective
SCD seemed to help(less pain gained 8 pounds in three months)
considering Remicade


mrskled
New Member


Date Joined May 2010
Total Posts : 3
   Posted 5/13/2010 12:14 AM (GMT -6)   
Hi, I am new to the site and ran across a discussion about low dose naltrexone.  I have never heard of this.  If you take this medicine can you stop taking plaquenil? 
 
Thanks for any info about this!

Joni James
New Member


Date Joined May 2010
Total Posts : 9
   Posted 5/22/2010 8:14 AM (GMT -6)   
I am preparing to start LDN. I have to stop taking all my other pain meds so weening has been a process. The reason I am optimistic about it helping with fatigue is because I have had partial relief from my fatigue with Talwin and Stadol, both of which are opiate agonist/antagonist drugs. This means they not only deliver opiates, but they also block some of the receptors of opiates in the brain. For some reason, this helps make them more effective FOR ME and some other people than any other form of pain med. From what I understand about LDN, by blocking SOME of the opiate receptors in the brain, it forces the system to generate more endorphins for a limited amount of time. The idea behind LDN is that those endorphins, produced around 2:00-4:00am, will flow through your system the day following the night you take the LDN. I will post back once I get going on it. I am not sure how long it is supposed to take before I will feel how it is working. Weeks or months?

SillyMe2
Regular Member


Date Joined May 2010
Total Posts : 110
   Posted 5/22/2010 10:31 AM (GMT -6)   
I belong to another site and they have a few members that started this for Fibro and are getting nothing but good results.

Sara Lee
New Member


Date Joined Jun 2010
Total Posts : 1
   Posted 6/15/2010 12:13 PM (GMT -6)   
Hey all,
My doc wants to put me on Low dose naltrexone for Fibro.
I have read good things about it but I also have read that it is inexpensive....the prices I have found for it is between $125 to $450 for one month supply. Can anyone tell me where to get it cheaper?
Thanks in advance

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 720
   Posted 6/20/2010 7:16 AM (GMT -6)   
I am considering starting this for Crohn's disease so I have been researching it a lot. If you use a compounding pharmacy that is familiar with it, the cost should only be around $30-$40 a month. If you go to lowdosenaltrexone.org there is a spot that talks about reliable pharmacies and the cost.
Diagnosed with Crohn's in 1998, father has UC we were diagnosed at the same age.

Currently on Prednisone, Sulfasalzine, Probiotic, Flax Oil, Calcium, Magnesium, D3. Previously on Remicade, just stopped Humira after 9 months, wasn't working.

No surgeries so far.

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