LDN & Avonex

september1968 · Post by **september1968** » Sat Feb 07, 2004 9:35 am

Just thought I would share...I went to the LDN website and found a link to contact the website editor.

I emailed him/her "Is it ok to take Avonex & LDN?"
They emailed me back, replying..
Yes. Although many people with MS proceed to get off the Avonex after
they see substantial stabilization (or symptom improvement) on the LDN.
Theoretically, the two drugs tend to act at cross purposes -- the former
tending to suppress the immune system & the LDN upregulating it.

Website Editor

Now, all I have to do is get someone to prescribe it.

fightingms · Post by **fightingms** » Mon Feb 09, 2004 5:53 am

Thanks for posting. I have been trying to find an answer to that question for quite awhile now!!

Take Care.........Kim

chrisf · Post by **chrisf** » Tue Apr 13, 2004 1:26 pm

Has anyone discovered any additional information about this question? Considering that the two (theoretically) work at cross-purposes, and I do currently take Avonex, I'd like to try and be as informed as I can be aand make a better decision about whether I want to combine the two drugs. Obviously, there are points of view among the neurological community that LDN may merely provide emotional well-being effects that cover up certain aspects of the disease but providing no real physiological benefit. I have no expertise in any of the physiology of it other than being an MS patient, so they could be right, or they could be wrong, and the MS'ers taking LDN have found something non-traditional that really does help a great deal. I do know that almost all the posts that I have read about LDN are glowing.

So, to restate, is there anyone out there who currently takes BOTH and can give some feedback, and/or has had some input from their neurologist about their progress since starting to take both? I would hesitate to start taking LDN and Avonex at the same time and have them cancel each other out; neither do I want to just stop taking my Avonex because I'm looking for a wonder-cure. I'm interested in practical experience from people taking both.

thanks.

LarryLDN · Post by **LarryLDN** » Wed Apr 14, 2004 5:04 am

HI chrisf. I think there's someone on this forum who takes both avonex and LDN. I know of a few still taking betaseron and LDN and there are many taking copaxone with LDN. Not to sure about rebif though.

I'm only taking LDN. It doesn't "make you feel better". I was taking 3.0 MG for 300 days then I changed to 4.5 and felt a difference. I wasn't really sure though, and wasn't sure if it would last, or just be for a while, so I stayed with 4.5 for 38 days and then finally said enough. 2 days after going back on 3.0 I realized the differences. 3 main ones for me.

So there is a noticeable difference between 3.0 and 4.5, so I'll assume it's not a mass illusion, just like the complains about the CRABs aren't an illusion even though what the people taking them complain about isn't in the literature or any reports.

From what I know and understand, LDN helps your body orchestrate your immune system the way it's supposed to be. Your body does the rest, if/where/when/how possible.

But I can't help with any of the CRABs, I have no experience with them. Just LDN.

chrisf · Post by **chrisf** » Wed Apr 14, 2004 6:44 pm

Thanks for the input Larry, it means a lot.

So are you going to go back to 3mg after having had taken 4.5 for awhile, or are you going to stay with 4.5? Did ramping up to 4.5 give you an even bigger improvement? Can you tell me a bit about how you feel better overall?

LarryLDN · Post by **LarryLDN** » Wed Apr 14, 2004 11:10 pm

Re-read my message. I took 4.5 for 38 days and then went back to 3.0, I'm just doing 3.0 now.

3.0 is better. 4.5 gave me more problems, I just wasn't sure what they were until I went back to 3.0.

The problem is while I was taking the 4.5 I was under a lot of stress, so I don't know if it was a fair test. I may have to try it again and see for sure.

Some people go from 3.0 to 4.5 and find 4.5 better, others start with 4.5 and drop down to 3.0 and find it's better. I guess it's a matter of doing both and comparing, but there definitely seems to be a difference between the 2 for those who have done a comparison.

chrisf wrote:Thanks for the input Larry, it means a lot.

So are you going to go back to 3mg after having had taken 4.5 for awhile, or are you going to stay with 4.5? Did ramping up to 4.5 give you an even bigger improvement? Can you tell me a bit about how you feel better overall?

september1968 · Post by **september1968** » Sat Apr 17, 2004 7:29 pm

ChrisF,
I am taking both LDN & A. There are several others that take other therapies (CRAB) with the LDN.

I have not noticed anything in relation to the Avonex & LDN. What I have noticed within 1 week ago taking LDN is that my L'hermittes is almost gone, I can walk without tingling, and I am not nearly as tired as I was.
5 months of Avonex had not done that for me.

bertabobbie · Post by **bertabobbie** » Fri Apr 23, 2004 10:45 am

I'm on both Betaseron and LDN. No problems so far.

gibbledygook · Post by **gibbledygook** » Mon Feb 21, 2005 5:33 am

Hi all,

I started two days ago with 3mg of LDN. I also take 200mg minocyline a day and a weekly Avonex injection. Last night was the injection and with the LDN I had the worst leg cramps I have had for months and months...

Xenova · Post by **Xenova** » Mon Feb 21, 2005 7:11 am

I've been doing Avonex & LDN for 7 months now. No problems to report.

The reason that they say Avonex & LDN contraindicate each one is the thought that Avonex is an immunosuppressant and LDN boosts the immune system. I did some research and was not convinced that Avonex is an immunosuppressant. Interferon is an immunomodulator like Copaxone. The NMSS classifies it as an immunomodulator. There are many others including Biogen who I called to get an answer. Do a google search on Interferon and Immunomodulator and you'll see a lot of evidence on what I am speaking.

What I find funny is that many consider the proof we have about LDN to be merely anectdotal. Yet, you can't even find any evidence that LDN and Avonex do not work together. Without any anectdotal evidence, they are advocating that they should not be taken together. So, we are to believe LDN works based on anectdotal evidence and believe that Avonex and LDN do not work together without anectdotal evidence.

I decided to do both because at the least I could be the anecdotal evidence. I have not had an excacerbations since starting and many of my symptoms have been relieved. I had an MRI two weeks ago and will be glad to post the results whether good or bad when I get them from my doctor.