Anyone heard of or tried LDN?

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puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 5/17/2009 2:45 PM (GMT -7)   
A friend of mine sent me an email about this drug and said she knew someone with Lupus being treated with this drug.  I Googled it and this is what I found.  It seems they're researching it for every AI condition except Lupus.  I don't know, what do you think?
http://www.lowdosenaltrexone.org/index.htm

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.

 

 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 5/17/2009 2:58 PM (GMT -7)   
If you put LDN in the box to the left of "SEARCH SITE" at the top of the page, you'll find several discussions of LDN within HealingWell, mostly for Crohns Disease.

I don't think anyone has ever come by who was using it for lupus.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/17/2009 6:30 PM (GMT -7)   
Yuppers! Lynnwood is right . . . there are several topics in Crohn's.

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


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 5/18/2009 11:11 AM (GMT -7)   
Yep and it seems like this is mostly a drug for Chrons and MS, but I saw SLE mentioned once on that website, I wonder if any test or trials are being done. It's supposedly an immune system moderator, wouldn't that be nice. Thanks for the replies.

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.

 

 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/20/2009 8:11 PM (GMT -7)   
Did you try the "Search" box at the top, right of the page? There really are some Lupus topics about LDN if you search for them. Let me know if you need help.

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


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 5/20/2009 10:23 PM (GMT -7)   
Hey Jennifer,
 
LDN comes up some on the MS board.  The word for MS is that it has some anecdotal success for treating pain and fatigue.  So far for MS, there is not good (double bling) evidence that it slows down MS progression.  Also, you are limited to other meds you can take while on LDN........no opioids or narcotics, no interferons.  It is "off label" for just about everthing.  The good news is: there seems to be very few side effects.  It is also quite inexpensive via one of the compounding pharmacies.  It runs about $40 dollars for a month's supply.
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.


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 5/21/2009 6:48 AM (GMT -7)   
Thanks Gretchen and Rosie. I think I'll wait until there is more concrete eveidence on how it works for Lupus, that and I don't even have a compunding pharmacy where I live. But I will be watching to see what kind of progress is made. Thanks again for all the links, you moderators make thing so much easier for us.

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.

 

 

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