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tink 2
Regular Member


Date Joined Jan 2007
Total Posts : 371
   Posted 2/8/2008 9:37 AM (GMT -7)   


This was on my local news last night a wonder drug. Just wanted to share it with everyone and you be the judge.
 
 
 
 
(Post edit requested by Denise/Tink)

Post Edited By Moderator (AlwaysRosie) : 2/8/2008 1:48:23 PM (GMT-7)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 2/8/2008 1:48 PM (GMT -7)   
Hey Denise!!

WOW! Wouldn't that be a blessing? !!!!!!!

In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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tink 2
Regular Member


Date Joined Jan 2007
Total Posts : 371
   Posted 2/8/2008 1:59 PM (GMT -7)   
This is being tested right here in my town. If I hear more I will post it. You can google it and find out more about it. It may help us with Lupus as well.
Lupus since 2005, Fiberomyalgia since 2006,  sjogren's syndrome since 2005,  diabetes since 2006, Depression since 2004. who would not be with all of this.
 
       I just try to make it threw every day as best I can.
        God please remember I am on the diet platter.
                  So many beads so little time.....
 
                   Have a great Lupie Day Denise 

Post Edited (tink 2) : 2/8/2008 2:03:36 PM (GMT-7)


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/8/2008 3:39 PM (GMT -7)   
It's interesting because cannukgirl posted about this med and said she is having really good results from this (it's on the "How do people feel everyday" post). I looked up some info about it and it's a legitimate medication that seems to be helping a lot of people. I'm actually going to ask my rheumy about it when I see him in April. Yes, you can google the name of the medication and the word lupus and find some good info.  I don't think it has gotten FDA approval yet for lupus, so right now it's an off label use.  The thing I'd have to deal with is that you can't be on pain meds like tramadol or vicodin and I've been taking tramadol for about 3 years now and I'd be scared about my pain levels if I quit taking it.  I also take vicodin if my pain gets really bad, so that's another issue.  I'll have to read more about this med, but it sounds a lot less toxic than a lot of the other meds used to treat out AI diseases.


Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; 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

 

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Post Edited (hippimom2) : 2/8/2008 3:52:42 PM (GMT-7)


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 2/9/2008 9:41 PM (GMT -7)   
Yup Hippi is right I am on this and VERY glad I am taking it. I am likely going to be able to get off my plaquenil and just take this as I am down to one pill every third day from 400 mg a day.  It's super cheap and has no side affects. There is a group and several websites about it. I did a lot of research on it before taking it and talked to several dozens of people and 5 doctor's around the world who specialize in just this medication. The pharmacy i get it from filled 6000 perscriptions last year of this so it's not new. I am glad it's finally getting the press it deserves as I know one lady who has SEVEN AI issues including lupus, sjogrens, leukemia and myashia gravis (sp) and she has drastically reduced her meds and is having great success on this. It is having the largest success in cancer and MS. But I do know 6 lupus people that I talk to regulerly who take it as well as myself. I would post links to sites where lupus patients comment on it  on here but don't think I can. The sjogrensworld site there are 5 of us from there taking it and several threads on there about it and several threds on this site in the chrons section about it. I still have my eye dryness but I was putting drops in around 10-12 times a day and now I just do it in the morning and my eyes are fine all day. My dry mouth is pretty much gone again except first thing in the morning. If I never had to sleep and deal with morning crap I would feel pretty good lol.


UCTD and sjogrens ( terrible dry mouth)  all biotene products and refresh liquigel eye drops and now LDN therapy which is a life saver

Post Edited (canuckgirl) : 2/9/2008 9:54:19 PM (GMT-7)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/9/2008 10:21 PM (GMT -7)   
WOW!  This is really interesting. I've never even heard of it before.  I'm going to look into too! 
 
Thanks!
Ginny
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 2/9/2008 10:36 PM (GMT -7)   
Yup I am pretty happy it's not a cure my any means and really isn't supposed to give symptom relief just stop all further progression however 1/3 of people have reported symptom relief as well. It does take some consideration like Hippi said you can't take opiad pain killers with it or immune suppresants. As it is an immune system regulator immune suppresants would defeat the purpose.
UCTD and sjogrens ( terrible dry mouth)  all biotene products and refresh liquigel eye drops and now LDN therapy which is a life saver


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 2/10/2008 8:53 AM (GMT -7)   
I am going this week to have my ANA checked since taking ldn to see if it has dropped at all as it was 1:5260 and has been 1:2580 for the past year. Plus I had or could still have an incredibly high anti rnp count so I am curious to see if these have dropped at all. I know it's early days but you never know
UCTD and sjogrens ( terrible dry mouth)  all biotene products and refresh liquigel eye drops and now LDN therapy which is a life saver


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 2/12/2008 6:21 PM (GMT -7)   
If I am not allowed to post this here can a mod please delete this thread. thank you
 
This is from the news report on ldn
 
 


UCTD and sjogrens ( terrible dry mouth)  all biotene products and refresh liquigel eye drops and now LDN therapy which is a life saver

Post Edited (canuckgirl) : 2/12/2008 7:27:08 PM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 2/12/2008 6:44 PM (GMT -7)   
Seems like it's okay to post to me -- seems like information only, not trying to sell anything.

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



biscuit
New Member


Date Joined Mar 2008
Total Posts : 12
   Posted 3/5/2008 11:44 PM (GMT -7)   
i heard about naltrexone from a d.o. who wrote a prescription for my daughter who has u.c. the d.o. insisted we get input from her g.i. before filling the prescription. have read a lot about it and am very happy to get your comments about this drug. i am going to email my daughter's g.i. tonight about naltrexone (he is in another state). just to be clear: in your experience, naltrexone doesn't necessarily make your symptoms go away, it just prevents you from getting worse? is that correct? i read results from phase 1 of the penn state u. study indicating that they had great success with this drug in putting people with crohns into remission. did you hear that, too?

canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 3/6/2008 12:13 PM (GMT -7)   
biscuit I would joing the yahoo ldn group message board there are dozens of people on there taking ldn for chron's. The rule of thumb is that it will stop progression. However there a LARGE number of people myself included who have had symptom relief greatly with this. But it's important to not go into it thinking that might be the case in case it dosn't happen to you. It can also take up to a year to reach maximum potential for symptom relief. I know for Chron's it is one of the only conditions that on record has proven to completly put the disease in remission to where they can stop taking the drug. However there are some CFS people who have had the same benefit. If you would like to know anything else let me know as I have researched this medication to death and have been taking since December 2007 with a break in between for two weeks ( stupid me) for doing that.
UCTD and sjogrens ( terrible dry mouth)  all biotene products and refresh liquigel eye drops and now LDN therapy which is a life saver

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