I had not heard of LDN until this week. I am intrigued by the possibilities...and still not quite sure what I think of it...

I am currently having a relapse with fatigue, headaches and optic neuritis. I skipped my Avonex for 3-4 weeks and think this may have something to do with the active lesion. We did the IV steroids a month ago. My neurologist wants to change my medication, with the theory that it's like cross training and that people experience an increase in results when they switch. She recommends going from the Avonex that I have been on for a little over three years to Copaxone. (diagnosed with RRMS 2/05 - Avonex 3/05 to now)

Looking at the differences between these two medicines and how they work has brought on a whole new set of questions for me. Like - why am I ON Avonex and how does Copaxone work and are either of these a good idea?

I prefer natural remedies whenever possible. In my opinion, supporting the immune system is one of the most important things we can do for our bodies. Though parts of my immune system are "misguided"...it is still my first-line defense against things like illness, cancer, etc. Apparently that is controversial. My first neurologist told me not to do anything that made my immune system stronger. But I am reading things that contradict that idea.

I would like to invite discussion. I know that many of you have been dealing with this longer than myself and have way more experience than I do. Maybe not all questions can be answered...

Brenda

hello Mom ldn is lose dose naltraxone, it is not the same as the dose used for ex junkies which tends to be in 50 mg increments. LDN is a dose that starts at 1.5 mg and will range to 4.5 mg. for some reason the low dose works, one draw back is pain meds may not be a good idea because the opiates in LDN can inhibit the pain meds and you could end up taking too much pain meds cause they are not working. That being said Aleve works wonders. I am on it and am happy about it so far and was able to stop 5 or 6 meds with pain meds included

here is the link to the thread and it has some links within to direct you to a web page or two about LDN

http://neurotalk.psychcentral.com/thread50240-54.html

the thread is at the top of this forum, in case you had not found it by now

A major problem with this med seems to be the neuro's themselves, number of them have no idea about it and others immediately think of the junkie dose saying whooooaa nelly

hope some of this helps


peace

hi brenda and welcome to NT.

everything i've read recommends that you stay away from herbs/supplements that claim to boost your immune system. with MS our immune system is hyperactive which is the exact process that destroys the sheath covering over the nerve pathways. that's what causes the neurological damage in our CNS (brain/spinal cord/eyes) and creates the sx's of MS.

i always like to advise people to speak to their dr before starting any supplement/herb etc for that reason.

avonex is an interferon med. copaxone is not an interferon.
C doesn't cause SE's that can happen from an interferon. like flu-like sx's etc.
altho some people on interferons don't have that.

that's why i chose C for my drug. also because i had a hx of depression and the interferons can make depression worse. i've been on C since '03 and have tolerated it well. i've had some decline but i'm also pretty stable.

it can take C up to 8 mos to start working in the body/CNS. i don't know about interferons.

i'd recommend that you do as much research as you can to help make your decision. you can call 1-800-FIGHT MS to get the # of your local chapter and request an information packet be sent to you.

you of course can go to the NMSS website and here at NT to look up meds etc.

and, i'm sure others will be along to give you their opinions.
hope to read more of your posts.

Say what, Frank? LDN doesn't contain opiates! It is totally non-addictive. (Wait a minute, what street corner do you get yours from?)


"What is naltrexone? -- Naltrexone is a medication that blocks the effects of drugs known as opioids (a class that includes morphine, heroin or codeine). It competes with these drugs for opioid receptors in the brain."


Why don't you tell Brenda how you are the one on LDN who still takes Copaxone too?

Brenda,

Here's a good link that explains LDN....

http://www.lowdosenaltrexone.org/

Those of us with MS use it to treat our disease. And, as you'll read, the dosage is minimal. Usually between 1.5 and 4.0 mg per day.

I've taken it since 8/08 and have found it to be beneficial to me. My first DMD was Copaxone which did not work for me. My second was Betaseron which also did not work for me. I was tired of using harsh chemicals to try and treat my MS. Seems they only gave me additional sx to deal with.

Do your research and choose the therapy that you feel is best for you. Good luck!

Thank you for all of the input. I actually was aware of the LDN thread, but since I am not on LDN yet - I hesitated to post this there. I have already been to the LDNinfo site and several others. I have done TONS of reading!

I am curious about using Copaxone and LDN together...any comments on that?

There is so much information and questions swirling around in my head, perhaps what I am looking for is: "What was your WHY for being on the medication you have chosen?" How do you believe it works with your body for health?

I want to take control of the decision this time. My neurologist made the Avonex decision for me back in 3/05...and I want to be in the driver seat this time.

Brenda

Good for you, Brenda. I finally got to that point, too. It's MY body....and I am the one who has MS.....so I'M going to make the calls on my treatment. Our neurologists work FOR us and we should be the ones to make the decision on which therapy to use, if any.

When I was newly dx the Neuro I was seeing then told me Copaxone was the best to start out on. It wasn't an Interferon and had minimal side effects. I started out with that one but my next MRI showed progression so I stopped taking it.

I was with a new Neuro at this point and he wanted me to start Tysabri but I wasn't ready for that one! He then suggested Betaseron so I started it. I still had some signs of progression on my MRI after being on that one for a year so I stopped that one, too (on my own...no Neuro suggestions).

I had read alot about LDN and wanted to try it so I began in August of this year. I am up to the maximum dosage now and it has really helped me more than I ever expected it to. I'm so glad, too, because I didn't want to use Interferons anymore. I was ready to just go off all therapy's if LDN didn't help.

I wanted to try LDN because I was tired of injecting myself with toxic chemicals only to have side effects that were as bad if not worse then the MS sx. I feel so much better on LDN....I have energy, I feel better and sleep better.....I just can't endorse it enough.

Everyone has to decide what's best for them.....and this choice works for me.

I REALLY appreciate this answer. I guess I finally asked my question correctly. I'm really trying to get to the heart of the matter...

Do you have a lot of symptoms that LDN alleviates? Has your MS progressed on the LDN?

I don't want a lot of unecessary meds in my body either. The Avonex has not given me too much trouble - as far as I know.

I would love to hear from others as well...

Hi Brenda, and welcome to NT.

I have had MS for sure since 1991, and probably a lot earlier . . . I liked denial.

There were no meds available when I first found out, so I didn't see the point in dwelling on what "might" be in my future. By the time I was knocked into reality, I had had the disease a long time, and was still doing ok (compared to many who had it for much less time, and/or were on the meds), so I didn't see the point in changing what I was doing in a big way.

I had reduced my stress level (got out of Mgmt), tried to eat better/exercise more, cut out dairy, AVOIDED/treated the first sign of INFECTION (to the best of my ability), etc. That might have helped to keep me relatively stable, and even now my neuro says there is no drug on the market that is proven specifically helpful for spinal lesions (which are my main issue).

I was basically left to my own devices, and found people talking about LDN. My doc was not keen on rxing it, but after a big fight where I threatened to get it off the internet from Mexico, he finally gave in. I've been on LDN (alone) for about 3 1/2 yrs now.

LDN has been a miracle drug for me ... BUT it does not save me from myself. It is still very important to not push ourselves too hard (as tempting as it is at times), and to TREAT infection immediately.

My recommendation is for people to try Copaxone with LDN ... for double protection. Sometimes people can't handle one or the other, in which case you have no choice . . . but if you have the choice, why not do "everything that you can"? I would suggest you adapt to ONE drug first though (for at least 3 months), and then try to introduce the other.

Cherie

Cherie - why Copaxone with LDN?

When you TREAT infection or illness...are you doing that naturally, say with Vitamins and minerals? As I said in my original post...I believe that supporting our immune system is important.

I think we should be listening to our bodies, for example: resting when the fatigue hits. What goes in our mouths, the exercise we get - surely all of that plays a part in our results.