HealingWell
Search Close Search
☰

Wonder Drug?

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/8/2008 4:37 PM (GMT 0)


This was on my local news last night a wonder drug. Just wanted to share it with everyone and you be the judge.

http://www.cbs47.com/content/topstories/story.aspx?content_id=d4fa2e03-2470-4af2-b58c-1cb1b4a2ed6a

 

(Post edit requested by Denise/Tink)

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

Posted 2/8/2008 8:48 PM (GMT 0)
Hey Denise!! WOW! Wouldn't that be a blessing? !!!!!!!
Posted 2/8/2008 8:59 PM (GMT 0)
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.
Posted 2/8/2008 10:39 PM (GMT 0)
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.
Posted 2/10/2008 4:41 AM (GMT 0)
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.
Posted 2/10/2008 5:21 AM (GMT 0)
WOW!  This is really interesting. I've never even heard of it before.  I'm going to look into too! 

 

Thanks!

Ginny

 

Posted 2/10/2008 5:36 AM (GMT 0)
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.
Posted 2/10/2008 3:53 PM (GMT 0)
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
Posted 2/13/2008 1:21 AM (GMT 0)
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



http://youtube.com/watch?v=Kz52KK5IhOc

 

Posted 2/13/2008 1:44 AM (GMT 0)
Seems like it's okay to post to me -- seems like information only, not trying to sell anything.
Posted 3/6/2008 6:44 AM (GMT 0)
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?
Posted 3/6/2008 7:13 PM (GMT 0)
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.
✚ New Topic ✚ Reply