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SallyC 05-04-2007 09:31 PM

I'm not skeptical of the science of it, Jena. The Scientists have worked hard to find something to help us and I so appreciate it. I'm skeptical of the proposed outcome for all PwMS. Are the DMDs really keeping you from having exacerbations and if so, is that helping to slow the progression of the Disease?

My guess is that, they are not, and the MS just keeps progressing along. LDN has stopped my the progression of my MS...IMHO. I am the same as I was 4yrs ago, when I started LDN and maybe a little better.

I didn't notice anything helpful at all, when I was on Avonex for 8 months and then Copaxone for 10 months....only nasty side effects from A and progression the entire time I was on them. I was RR then and progressed to SP, while shooting myself silly with these drugs.:D

Quote:

Originally Posted by jena1225 (Post 94918)
Hi Sally :)

What part of that are you skeptical about though? since all the information out there says the same thing... Just curious :D

Also, I don't dount for a minute that LDN is helping you feel better. I am just not sure about it keeping you from relapsing :confused: But then, I have not done enough research on it yet.

Also, I have always been curious - what do you do when your lifetime supply runs out? Thanks!


doydie 05-04-2007 11:34 PM

Sally, you only have a lifetime supply for a certain medicine? What does that mean?

SallyC 05-05-2007 12:31 AM

Quote:

Originally Posted by doydie (Post 95132)
Sally, you only have a lifetime supply for a certain medicine? What does that mean?

Oh thanks Dodie, I missed that question. I'm guessing that she means a lifetime limit as with Navatrone.

Naltrexone is NOT Navatrone and is NOT a Chemo drug. LDN (Low dose Naltrexone) is perfectly safe and therefore has no lifetime limit.

jena1225 05-05-2007 10:20 AM

Yes, I did get the 2 mixed up, my apologies. Indeed, LDN has a very positive picture. This link is a good example of that:

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

Sally, did you experience increased lesion load while on those CRABS?

I can't say that the CRABS are a guarantee for everyone, no. But I wouldn't go so far as to say they just don't work at all. Especially not after all the research involved, and the almost 20 years it has been around.

Also, if they are working for someone, they don't claim to be 100% effective. The best we can get is 33% :( But being that they are the only proven ones at this point... I can only hope... Also, the se's are very over exaggerated, The worst one for me are occassional hot flashes, as the same for most people I have spoken to.

But, again, for it not to have any scientific proof, I can say that almost everyone I have talked to that is on LDN, only have great things to say :)

doydie 05-05-2007 01:36 PM

Sally, are you saying that your body can only take so much of a drug then it is ineffective?

SallyC 05-05-2007 06:03 PM

Quote:

Originally Posted by doydie (Post 95302)
Sally, are you saying that your body can only take so much of a drug then it is ineffective?

Huh? I don't understand your question, Doydie.

I was just explaining the difference between Navatrone and Naltrexone.

doydie 05-05-2007 10:56 PM

I guess I was asking about the Navotrone. I didn't know that your body could only take so much of it. I guess that's what you mean by life time limit. I think I'll stick with my Avonex. But I'm RRMS so for now I don't have to worry about that.

jena1225 05-06-2007 11:33 AM

Quote:

Originally Posted by doydie (Post 95498)
I guess I was asking about the Navotrone. I didn't know that your body could only take so much of it. I guess that's what you mean by life time limit. I think I'll stick with my Avonex. But I'm RRMS so for now I don't have to worry about that.

Hi Doydie :) Navotrone is a chemo for SPMS or worse, with a lifetime limit:

"In multiple sclerosis, the usual dosage is 12 mg/m(2) through IV every 3 months. Ordinarily, patients should not receive Novantrone treatment for more than two years at a time, and should not receive more than 140-160 mg/m(2) in a lifetime"

http://ms.about.com/od/immunomodulat...ovantrone1.htm

doydie 05-06-2007 10:23 PM

thanks Jena.

jena1225 05-07-2007 05:02 AM

Quote:

Originally Posted by doydie (Post 95843)
thanks Jena.

You are welcome, and I apologoze for my error earlier :wink:


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