Low Dose Naltrexone

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Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 8/17/2008 11:35 AM (GMT -6)   
Hello to all.  I did a site search (from a different forum) for LDN and was surprised to not come up with any referrals to the MS forum.  As I understand it, this drug is showing great promise for MS (in particular) and wonder why no one here is apparently trying it?  Mostly just curious.  Thanks.

20yearsandcounting
Regular Member


Date Joined Jun 2008
Total Posts : 100
   Posted 8/17/2008 3:59 PM (GMT -6)   

Well, I have never heard of it so it is new to me.  Maybe you could post replies with sites for us to check it out.

Thank You Very Much...Peg idea


20yearsandcounting
Regular Member


Date Joined Jun 2008
Total Posts : 100
   Posted 8/17/2008 5:02 PM (GMT -6)   

I did some searching on Search Google.  I looked  for (1) Naltroxene and National Multiple Sclerosis Society and (2) Naltoxene and Multiple Sclerosis.  I found quite a few sites there.  It says that no clinical study has been conducted with Naltoxene for MS.  Maybe in the future there will be trials done.  But, as for myself, I would not try it.  nono


Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 8/17/2008 5:21 PM (GMT -6)   
Peg, our replies have crossed up while I was typing this. Maybe the little bit I've written here and the national news stories will give added insight about it not being approved yet. Here's what I was writing when notice of your response came in:

~~~~~~~
You can start here, but there's a lot more info out there: www.lowdosenaltrexone.org
(You may have to cut-and-paste, or type, that in your browser's address line.)

If anyone would like two current network news stories I have, just ask and I could email them to anyone whose address is available with their profile...OR I can post them here if that's ok (moderator, please let me know?)

There are two main glitches from what I can tell:

1) This is an established FDA approved drug for another original purpose (in a much higher dose) that has already gone to generic and the pharmaceuticals are not interested in backing any research, promotion, etc. (NO MONEY in it for them). This also means many doctors are not even aware of this (and other) uses yet...so introducing them to the idea may be a bit tricky. They have to write the low dose prescriptions as an "off label" use until it becomes established/approved for MS patients.

and

2) The low dose has to be formulated at a compounding pharmacy, but there are ways of locating those and getting it done. One way is to simply ask your local pharmacist to locate one. If that doesn't work, there are places on the internet that can help with locating them.

I have NOTHING to gain from this...and sure don't want to rock any boats or offer any false hope with this info. I would just love to help anyone if I can. Three years ago I lost a dear friend to complications of what she called "this Mighty Stupid Disease".
 
(Mod Note: I just activated u'r link.)

Post Edited By Moderator (rhondab) : 8/17/2008 5:39:44 PM (GMT-6)


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 8/17/2008 5:38 PM (GMT -6)   
Hey 20Years

U'r right...there is no concrete evidence that shows this med difinitively improves the course of ms. That's the primary reason most don't use this med. The fact that FDA approval for use with ms has not been recieved is also prominent in docs not prescribing it.

As for the news stories u'd like to share, just post u'r links and that should do it. We can't post the article due to copyright issues, but the links should do just fine.

Take care and thanks for this info!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 8/17/2008 6:18 PM (GMT -6)   
Video, text and comments from ABC affiliate in PA, May 21, 2008
(This one explains the pharmaceutical connection to the delay in studies):
http://abclocal.go.com/wpvi/story?section=news/special_reports&id=6156884

CBS affiliate NY, May 26, 2008:
http://wcbstv.com/topstories/lo.dose.naltrexone.2.732830.html

Again, you may have to cut-and-paste or type the addresss in your browser's address line.

Best wishes to all.
 
(Mod Note: I just activated u'r links.)

Post Edited By Moderator (rhondab) : 8/17/2008 7:13:53 PM (GMT-6)


20yearsandcounting
Regular Member


Date Joined Jun 2008
Total Posts : 100
   Posted 8/17/2008 7:03 PM (GMT -6)   

ok kewl all....i am just leery of new things as you know me and my rollawalker. turn and it is nice of you sister sister to want to help. thank you


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 8/17/2008 7:11 PM (GMT -6)   
O Sister Sister i'm so sorry! I addressed my last post to 20years, but should've also included u. Please forgive my error.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 8/17/2008 7:51 PM (GMT -6)   

Sister sister,

The reason, in my opinion, that no one here uses low dose naltrexone is that it does not work.  I did a ton of internet research and talked to both my neuro and my GP about it.  My neuro says that it was tried for MS (off label) more than twenty years ago.  It has only shown occasional anecdotal success.  I found a compounder and my neuro was fine with me trying it and offered to write me a script.  She also explained that her associate used to prescribed it for years without any notable success, well that was enough for me.  The other problem is that if you are on LDN, you cannot take many, many other meds that treat symptoms.  I want a proven progression therapy that allows me to use other meds that treat my symptoms and maintain my quality of life.

I also see that you have posted about LDN in lupus.  You say that you have no vested interest and yet you do seem to be pitching LDN. Your offer to e-mail others (yet you have no e-mail listed) really makes this suspect.  Make sure that you understand our rules here at HW and that you understand that spamming or selling anything will get you banned.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 8/17/2008 7:58 PM (GMT -6)   
Rhonda, no need to apologize!! And thanks for activating the links. : ) I hope that someone may find them to be helpful...or at least encouraging as something to look forward to in, hopefully, the near future.

Peg (right?), no problem! Even meds with full approval can be daunting and I understand your reservations. One reason this was so exciting to me is that it is not something to suppress the immune system...but bolsters it instead. I only know about it because of an acquaintance who is taking it for cancer.

Everyone take care and best wishes!

Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 8/17/2008 8:09 PM (GMT -6)   
Gretchen, sorry if I overstepped my bounds. I post and read at the lupus forum on behalf of my sister (thus, my screen name of Sister Sister) who has been too sick to do so for herself. The recent t.v. news that I found gave me hope that this might help some folks here...especially the comments that some viewers with MS had posted at the end of the one done by the ABC affiliate. My only vested interest is that I lost a very special friend to MS and detest it for that very reason. Again....sorry.

mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 8/18/2008 5:06 PM (GMT -6)   
I am remaining open minded about LDN for now.  I have not tried it, but I am considering it as I have had problems with the other available meds.  I know that there were 2 presentations on LDN at the latest Neurology conference with preliminary results from 2 different trials.  I am still trying to find out what their conclusions were.  Has anyone seen anything on these studies?

Barb/mystery reader
Diagnosed April 2007
Started betaseron --  May 2007 -- experienced allergic reactions after 2 weeks
Started copaxone -- June 2007 -- stopped after 4 1/2 months;experienced  severe 5 IPIR's
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)


Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 8/18/2008 6:11 PM (GMT -6)   
Barb, here are some references to current reports I have found:

http://www.lowdosenaltrexone.org/ldn_latest_news.htm

This is a Feb. 2007 article, but reports two patients with positive outcomes (Wilkinson and Finlayson):
 
(Mod. Note: I just activated u'r links.)

Post Edited By Moderator (rhondab) : 8/19/2008 6:01:25 PM (GMT-6)


peaceintruth
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/19/2008 11:48 PM (GMT -6)   
I just posted to another thread before I saw this one. I'm new to this board but have taken LDN since February of this year and hope my experience with it might help. I was dx'd with progressive ms in Oct. 07 and was progressing rather rapidly. I started the LDN in February and noticed an immediate halt to my progression. Also, within two weeks of starting the LDN all of my nuerological pain was gone. The LDN did not, however, reduce my tremors or weakness. I started on doxycycline in June (for a mycoplasma infection) and that has taken away the tremors and weakness.

My naturopath told me the LDN raises endorphin levels (and this was proven in an Italian study that's results were released in April this year) and is taken in a homeopathic dose. That is, the drug itself doesn't actually fix the problem. It enables your body to heal itself. Apparently, other studies have shown that people with ms have very low endorphin levels and that causes a dysregulated immune system. I have had great success with it and hope that anyone who can't (or chooses not to) use the standard meds will think about trying it.

Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 8/20/2008 5:32 AM (GMT -6)   
The Italian study you allude to is mentioned in the first link in my post dated 8/18. In general, it seems to work for some and not others, based on what little I've read about it so far. Since it's also used for Crohn's, I read about it at that forum as well and noticed similar mixed results for those folks. Glad it seems to be helping you and I hope it continues to do so.

peaceintruth
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/20/2008 9:31 AM (GMT -6)   
Sister Sister,

The Italian study showed that endorphin levels were raised for all study participants by the end of four months of LDN use. The study did not measure disease progression - that will be done in the next phase. It did, however, measure quality of life issues (pain, fatigue, depression) and the abstract says they were much improved. The caveat, of course, is that no actual statistics were cited because "a published report is pending."

You're right - the drug does seem to work for some and not for others. That is how it is with all the ms drugs - indeed most drugs developed for most chronic diseases. The CRABs only have a 35-40% efficacy rate according to the patient packets I was given. LDN is just one more drug in the arsenal that can be tried and if it works, great - if not, on to something else. It's the easiest and cheapest drug I know of that's shown to work for some of us. Also, it can be taken with copaxone but not the interferons. I can vouch for the fact it is a great pain reliever and anti-depressant.

Hope your sister finds some relief from her lupus. It's a terrible disease.

mysptball
New Member


Date Joined Aug 2008
Total Posts : 1
   Posted 8/21/2008 3:52 PM (GMT -6)   
I just read about LDN today. I have an appt with my neurologist at USF Tuesday. I am going to ask him/her about it and what effects it would have with the Tysabri I have recently started.

Sister Sister
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 8/22/2008 9:40 AM (GMT -6)   
mysptball, there appears to be some really good advice at this link for how to best approach the subject of trying LDN with your doctor http://www.gazorpa.com/PatientGuide.html I hope it might be helpful.

peaceintruth, thank you for your kind words about my sister. She has effectively lost the last three seasons to "probable lupus with arthritis" and her ordeal continues. Who knew a twinge in an ankle back in Dec. would lead to all she's experienced since?

Blessings to all...
 
 
 
I activated your link.

Post Edited By Moderator (Gretchen1) : 8/22/2008 10:59:33 AM (GMT-6)


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/14/2008 5:07 PM (GMT -6)   
Sister

Thanks for you info on LDN. When you look at steroid therapy and immunosuppressants, some of the long term damage can be really bad. I've been told that once they get rid of my supposedly latent TB infection (I think I have some extrapulmonary, had pulmonary at one time), that I will likely need steroids for the rest of my life because my whole endocrine system is damaged from whatever disease I had, they are thinking misdiagnosed TB that I fought off after the damage. Just getting rid of this supposedly harmless "latent" infection improving my health tremendously as my immune system doesn't have to focus so much on it. But I have seen family members on steroids spiral down and my health got worse on them because I just couldn't fight disease and I started getting all the sideffects. So now I look at anything before going back on steroids. I have ALOT of chronic pain due to neck surgery and am scared because of a bad liver I can't take antiinflammatories, so I may not even be a candidate. But if I could tough it out for a while, it might be worth a try before surrendering. My adrenals and the rest are not so bad that I couldn't live without the steroids. So before things get worse, it may be worth a try. How many weeks does it take to tell any difference, is it right away?

Thanks for your info. To me, steroid supplementation seems the last resort because then the glands will die. I definitely urge anyone who hasn't had one in a while to talk to their doc about getting a tb test and possibly seeking treatment. It really did a number on me having it for over twenty years. My poor son has troubles and it was detected during a prenatal exam. I was sick with it during my pregnancy, though I was never tested for tb and they just gave me really strong antibiotics.
My immune system and endocrine has been a mess ever since.
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

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