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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   LDN Information & Check In (https://www.neurotalk.org/multiple-sclerosis/50240-ldn-information-check.html)

Kitty 09-23-2008 02:15 PM
Wow....I had no idea you could take the two together. I've always been told no DMD's except Copaxone which is not an interferon. :confused:

Kitty 09-23-2008 02:17 PM
My phone consultation went well. He told me to up my dose to 4.5 mg as soon as I finish my antibiotics. So...next week I'll give it a try.

tante 09-23-2008 02:26 PM
Quote:
Originally Posted by barb02 (Post 374568)
I did not realize that you could take an interferon with LDN. I did know that copaxone and LDN were ok.
There are many of us that do.
The conflict seems to arise from the use of the term immunosuppressant, rather than immunomodulator.

A search using "interferons, immunosuppressant or immunomodulator," brings up a starting point for the differentiation, and the following quote comes from the required detailed description of the recently completed UCSF LDN study, which btw, accepted participants on modulators like the INTERFERONs.

'Immunomodulatory and immunosuppressive therapies are known to modify the course of the disease. Interferon beta-1a, interferon beta-1b and glatiramer acetate are immunomodulators whereas mitoxantrone and natalizumab are immunosuppressants

http://clinicaltrials.gov/ct2/show/N...ow_desc=Y#desc

tante 09-23-2008 02:37 PM
I should add that when I say "many of us that do," many is certainly relative.;)

Obviously a major source is shut off to those on any of the immunomodulators other than Copaxone, and it is hard enough to get as it is, but I know of quite a few others who take it, and I believe other people here know folks also.

I was leary of "coming out of the closet" at first, for fear of responses, but so far so good, except in one place.

As I said before, it is amazing, and my neuro is both brilliant and a mensch for rxing it. He has many grateful pts.

marion06095 09-23-2008 02:41 PM
I started my 3.5 mg dose last night, up from the 3. 0 I had been doing for the previous month. I’ll be on this dosage for two months. I have been feeling very well, and I am enjoying the first major improvement of my symptoms in decades. Is it the LDN? Is it the placebo effect? Is it the Prednisone taper? Only time will tell, I guess. In the meantime, I am just going to enjoy.

SallyC 09-23-2008 02:45 PM
Yes, Tante, I know someone who took Beta and LDN for a couple of years and then quit both!! I don't know exactly why and haven't heard, if she went back on either. She loved the LDN, for that time frame, though..:)

Quote:
Originally Posted by tante (Post 374612)
I should add that when I say "many of us that do," many is certainly relative.;)

Obviously a major source is shut off to those on any of the immunomodulators other than Copaxone, and it is hard enough to get as it is, but I know of quite a few others who take it, and I believe other people here know folks also.

I was leary of "coming out of the closet" at first, for fear of responses, but so far so good, except in one place.

As I said before, it is amazing, and my neuro is both brilliant and a mensch for rxing it. He has many grateful pts.

lady_express_44 09-23-2008 04:07 PM
Hi Tante, and welcome to the thread! :)

I posted very early on in this thread that I knew of others that were taking the interferons and LDN (didn't know about you, but "others"), and have seemed to be successful with the combination:

Quote:
Originally Posted by lady_express_44 (Post 327889)
Narcotics, codeine and the interferons (for now) are not recommended with LDN. Copaxone is apparently ok, and I so know of some who've used LDN with one of the interferons too. They are currently wrapping up a trial that included people on Beta, Rebif, and Avonex, so they should have some idea from that whether they are compatible.
I know that Dr B didn't recommend it and that had something to do with the way in which the interferons tend to "modulate" through suppression, vs. Copaxone "modulating" through enhancement. I don't know how he arrived at his conclusion, but since he was the guy that discovered the use of LDN for MS, I went along with his theory/recommendation.

I do know they were trialing LDN users on interferon patients . . . but I haven't caught up with those results yet.

I'm glad to hear LDN is working out well for you though, and that you get to hold onto your 'double insurance'. ;)

Cherie

tante 09-24-2008 07:15 AM
Quote:
Originally Posted by marion06095 (Post 374618)
I started my 3.5 mg dose last night, up from the 3. 0 I had been doing for the previous month. I’ll be on this dosage for two months. I have been feeling very well, and I am enjoying the first major improvement of my symptoms in decades. Is it the LDN? Is it the placebo effect? Is it the Prednisone taper? Only time will tell, I guess. In the meantime, I am just going to enjoy.
"...the first major improvement of my symptoms in decades."
",..I am just going to enjoy."

Almost miraculous, isn't it?

:)

tante 09-24-2008 07:32 AM
herekitty1960
 
Quote:
Originally Posted by herekitty1960 (Post 374363)
I have a 1 PM phone consult appointment with the doc today....I've been on LDN since 8/25 and the 3.0 dosage since 9/01. I'm hoping he tells me it's okay to bump up to the 4.5 mg. I am nursing a sinus infection and on an antibiotic so he might tell me to wait until the medication is finished.

I like the 1.5 mg. tablets because it gives me the option of taking 3.0 or 4.5 easily.

I need to write my questions down or I'll surely forget them! :o

I had wondered how long you had been on LDN...turns out not long at all. Was the discussion here helpful to you in deciding to try a higher dose, and had spasticity been much of a problem for you in the past?

I can go search for these answers if that would be easier for you. I guess it is tacky of me to not try it first, but asking you now might get more information, or a better perspective, now that you've been on it for a while.

Thanks!

marion06095 09-24-2008 11:32 AM
Tante,

Almost miraculous is right. If this improvement lasts I will be astounded. It isn’t like I don’t have MS, or anything like that. But the implications for the quality of my life are huge.


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