Lots of questions
 

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 :circlelove:

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? :eek: 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! :)

What was your WHY for the medication you are on?
 

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.

The heart of the matter
 

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. :D

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. ;)

The interferons are not currently recommended with LDN (immune modulators that suppress) vs. Copaxone, which is apparently an immune modulator that enhances. They are doing a trial with LDN and the interferons though, so maybe they will change their mind on this.

I don't treat infection naturally, I just do everything I can to avoid it. I ALWAYS treat infection with antibiotics and fever reducers, and NEVER LEAVE INFECTION untreated.

I have not gone the route of enhancing my immune system with vitamins, only because we have heard so many warnings about that. That may prove to be wrong in the longer run . . . but I haven't gone that route.

I don't do many meds, and try to use natural methods when possible. Those natural methods don't include vitamins, but stretching, physiotheraphy, hypnotherapy, yoga, etc.

I agree that taking care of yourself is critical though; don't push too hard, rest when you need to, etc.

Cherie

Hi Brenda, :)

Welcome to NT. You've received some great advice already, and I second what Cherie said below, it makes a lot of sense if you plan to use LDN. I've been on Avonex, then Rebif, then Copaxone and finally, Tysabri. I sometimes think about what I'll do if I need to switch again, and for me it's a toss up between Avonex and Copaxone. I like the once a week shot, except for the fact it's a harpoon type of needle, lol.

I don't like to take a lot of meds, but the disease has made that decision for me. :rolleyes: I try to reduce stress, eat well, exercise and get enough sleep and that helps too. Keep us posted on your decision. :hug:

I appreciate that Wiz. I too use no other medications - just the Avonex and I take two ibuprofen prior to the injection each week.

I am definitely leaning towards Copaxone and LDN...perhaps just LDN. Lot to think about.

Brenda my apologies for typing something wrong b4 the opiates in the pain meds do not mix with ldn not the opiates in LDN my mistake sorry about that, yes I take both LDN and Copaxone, but honestly, I can not say it works, so my opinion on C is biased, so that is why i said naught about it, hope some of your questions are slowly getting answers

Actually, with all of my reading...I knew what you meant. ;)

Can you tell me about your feelings regarding the Copaxone? I don't mind the bias. I prefer straight talk, and I understand that everyone has a different opinion and that it's a personal decision...but I still would like to know what YOU think. :You-Rock:

My suggestion is to try the LDN for 6mos and see how you do, then, if you feel the need, add copaxone. I know a few on both and wouldn't give up either one, 'cause they dont know which one to give up..:D

I was on Copaxone for about a year and I still progressed rapidly to SPMS..:mad: I haven't progressed in MS disabilirty since starting LDN 5.5 years ago.:)

It is great that you have taken charge of your care and I wish you well with whatever your choice of Med..:hug:

the only way to find out its not working and or working is to stop taking it, I have been on it for 3 yrs and have had 3 new lesions, even Nero the neuro hemmed and hawwed at me staying on it, he wants to give it some more time with the LDN, so i am a lab rat for ~10 more months, I honestly can not tell you if it is working or not for me, and I dont care for being in suspended animation, its more of a me me me thingy here I dont like it had two bad reactions and one really freaky one, they think I might of hit a nerve injecting, paralyzed myself from hips down for almost 40 minutes, but the other two reactions, were those rarely seen ones where your heart races you feel like your having a major kicker,

Thank you for the suggestions, Sally. After a lot of reading I am now thinking about LDN alone. It's interesting to me that the FDA releases meds after clinical trials on about 100 people...but Dr. Bihari's HUGE list of MS patients on LDN is considered anecdotal because he has not forked out the bucks to do trials with placebos!

I am inclined to subscribe to a theory that says building the immune system is a good thing. ;)

weegot5kiz, thank you for your honest answer. I am assuming that you are talking about side effects from the Copaxone? How long have you been on the LDN? By the way, I am sorry to hear that you are experiencing more lesions. :hug:

help!
 

I read your reply to the question about LDN and something you said stuck out. I was just diagnosed last Friday and now we are trying to figure out how long I have actually had this. I was also Dx with Graves disease back in 99.

You were talking about lifestyle and dietary changes, and you mentioned something about cutting out dairy. Does this help?
Obviously me being new at this has led to many questions for my next appointment which is on Monday, and one of the biggest questions was what I can do to make it better.

The stress part is never going away it seems between working full time, going to school part time and being a mom. But I have had a really really bad week and I have noticed that I wake up in the morning in so much pain that I am forcing myself to take a day off tomorrow. It is my birthday and I refuse to go to work!

My neuro is a wonderful person who is a little more personally vested as his sister has progressive MS. HE is recommending Rebif, but we have not gone over all of my medical history including the bipolar/anxiety issues I have had on and off for years. He did tell me there is a drug in pill form that is in the final stages of FDA testing and would hopefully be on the market in the next 2 to 3 years that has been shown to reduce relapses by over 60% could this be LDN?

I am curious about this...can you ask when you go and then let all of us know? I actually have mixed feelings about LDN getting FDA approval, because I worry that it will drive the price up. From what I understand, right now it can be obtained for anywhere from $10-$40/month. I don't want to see that change and worry that it might.

Man! Am I suspicious of pharmaceutical companies, or what?! :rolleyes:

Brenda I start LDN on 8-8-8, I say if you can avoid any med do so regardless of what it is, but thats me I allowed docs to test and prod me and pump me full of pills for first year and half, then informed my doc i dont want a ton of pills to take two, sometimes three times a day, I would like to keep my liver thank you very much.. and I approached him in a semi whimsical and thoroughly thought out position, and he has worked with me ever since regarding my distaste for pills, and yes I understand sometimes pills is what is needed, but if I can by adapting ignoring and possible natural remedies(i dont mess with these too much, yeah and ive got a bridge in brooklyn for sale)

but if I can get away with not taking excess of pills then coolie ohs to me, you keep edumacating :rolleyes:yourself and you will be fine, information is a good allie

Will do. And sorry guys I totally meant to send that last one as a PM. But seriously how does dairy effect MS?

We don't know if dairy affects MS, but some people have theorized that it MS is caused by "leaky gut", and suggest we stay away from dairy.

I am allergic (or maybe just sensitive) to either a protein or the calcium (can't remember) in dairy. I had several health issues that pointed directly at the necessity to avoid dairy, so I mostly cut it out about 30 yrs ago. The only time I consumed a significant amount of dairy after that was when I lived on a farm in New Zealand . . . and within a month of arriving back home, I had my first serious MS attack. :cool:

If dairy does have anything to do with MS, it may be the reason that I am still relatively ok after 18 definite years (possibly 30+) with MS.

There is more information about dairy and MS in the theory behind the "Swank Diet", which some people try to follow to manage this disease.

Cherie

No, there are several oral meds that are currently undergoing large clinical trials for MS, including; FTY720, Trimesta (oral Estriol), BG00012 (also called BG-12 or dimethyl fumarate), MN-166 (phosphodiesterase inhibitor used for asthma), Cladribine, Laquinimod (or probably others I am forgetting) . . . Which one is boasting a 60% reduction in relapses, I'm not sure . . . maybe FTY720. :confused:

In the meantime, there is plenty of research going on to determine what causes the damage in MS . . . so by the time they get to market, maybe "reducing relapses" might not be considered the "right" thing to do. :cool: There is already some research indicating this theory ...

It is highly unlikely it will EVER get FDA approval for MS . . . so I don't think you need to worry about the cost going up any time soon. The type of trials that are needed to prove efficacy for disease progression will NEVER happen, simply due to cost & profitability on the drug.

The small trials they have done, or would like to do, are to prove its efficacy as a symptom management drug. Those trials are not nearly as expensive and if they prove its effectiveness for symptoms . . . people will get the added BONUS of no progression with the disease. :D:D:D

Cherie