Young, new to MS, quick thoughts on Copaxone

[casey2u]

Hi there, I'm brand new to the forum. Thanks to everyone for helpful info.

My neice, 16 y.o, was just diagnosed with MS following a moderately severe bout of optic neuritis. It now seems likely that a much light bout of ON a few months ago was a first relapse (Can you call the first one a relapse?).

Anyway, we're all trying to get up to speed. She's had two MRI's, and we've been told she has a number of lesions -- some neuro's suggested around 3, and another said over 10 -- apparently they're counting somewhat differently, they were looking at the same MRIs.

She has responded reasonably well to steroids and has most of her vision back. She was already leaning towards a veggie diet, so now she's modifying that and trying out the Paleo diet. She's mostly eating salmon for protein, she's taking D3, fish oil & turmeric, and she's getting lots of exercise.

Her Dr. suggested she start on Copaxone. Since we are early in the assessment, he wants to treat fairly aggressively until/unless we have confidence that this isn't moving quickly (at least). He also suggested that C has relatively few side effects (I read the thread 121465 and some others (I can't post URLS, too new to forum)).

I'm sorta out of time and energy right now for more research, so I'm just putting it out there: she will probably start on C any day now, unless there were some really good thoughts/info as to why she shouldn't.

Thanks, I look forward to learning from all of you. Thanks so much for all your sharing, I am already intensely appreciative.

Keith

Also: following my question about whether she'd be on C forever, the Dr. had what I thought was a pretty good strategy: try it for a while (he mentioned perhaps 5 years). Monitor the disease's progression. If it is not increasing at all, and she wants to, she could then go off it, under careful monitoring...

[BigA]

She is starting off well and Copaxone is easily the least harmful drug. I think it's a good plan.

I recommend this book. I believe everyone should read it when diagnosed. it's by a doctor who has MS, who's mother died of it and who has put together this book which is an education and total program:

http://www.amazon.com/Overcoming-Mul.../dp/1742371795

[knuckle]

I think Copaxone would be a good choice, for now, and then transition to BG-12 when it becomes available in the next 6-12 months. BG-12 shows higher efficacy than Copaxone and is a pill.

Having said that, I'd recommend you research LDN and there is a sticky thread above that provides a number of informative websites. I think, and user experiences support, that LDN is more effective than Copaxone and, I think again, LDN essientially does the same thing as BG-12, it modulates immune system function.

Lot's of people with MS, as well as other autoimmune diseases, take LDN with good results. It's interesting to note that BG-12, which is "Dimethyl Fumarate" is being used or researched with positive results in the same autoimmune diseases.

LDN (low dose naltrexone) is an off-label use of a generic drug. Some neurologists understand how it works and prescribe it, some don't. LDN seems to be more effective in women than men and the earlier you take it after disease diagnosis. LDN is compatible with Copaxone but I think unnecessary to take with BG-12.

Nevertheless, the days of injecting are numbered. Sounds like she's following a good diet and lifestyle. I'd suggest Curcumin instead of Tumeric (google: curcumin multiple sclerosis). Consider Calcium 2AEP, Choline Citrate, Alpha Lipoic Acid, Magnesium, as well (google each with "multiple sclerosis").

[Mable]

Funny, my neuro said "I want to be aggressive with this..." and put me on Copaxone too. But the truth is, Copaxone isn't really all that aggressive compared to the other treatments out there. I think they use that language because they know it freaks out healthy people to suddenly be told they need to take a shot everyday. When you're new Copaxone seems aggressive, but most of us get used to it pretty quickly and it's no big deal.

As for the rest of her life thing, I think in fewer than 5 years most of us will be taking pills or periodic infusions rather than self injecting. There are a few treatments being reviewed by the FDA right now that are more effective than the injectables. They should be on the market by 2013. There are lots more in the pipeline.

Also, once things settle down, you might want a second opinion on that "okay to go off the meds in 5 years" thing. But no hurry.

[Jules A]

I think it is a good medication to start. I have been on it 7 1/2 years and feel it has helped me remain active and able to work extreme hours.

I'm not sure if the physician used the whole 5 year thing to ease your apprehension but imvho if in 5 years she is still doing well that would be all the more reason to continue it but anyhoo I do think starting as soon as possible is crucial.

Best wishes for your family.

[marybenes]

I have been on Copaxone for almost eight years. Fortunately, I haven't experienced any relapses and my doctor has never suggested I go off Copaxone because I am doing well.

I realize that doctors have their own way of treating patients. I know of friends who have gone off treatment because they were doing well only to have some really bad relapses. Everyone is different though. I would caution going off treatment. Monitoring can only go so far but it can't prevent someone from relapsing - this disease progresses.

[casey2u]

Overcoming book

Thanks, I had looked briefly at that book. I'll get it soon. I was thinking about the Wahls' book too, and I bought the China Study (it was only $7).

[TLC_31]

Your niece’s diet and exercise regimen sounds great, and I believe her doctor is correct in his “fairly” aggressive stance. MS can be scary at diagnosis, but as it’s turned out in my case I’m arguably as healthy today as I was eight years ago, maybe better. With the approach she and her doctor(s) are taking, it’s very possible your niece will be able to say the same thing in 2020 and beyond.

Copaxone and the interferons are not the most aggressive treatments, but they have stood the test of time with side effects that usually can be tolerated and/or mitigated. If Copaxone proves intolerable or obviously ineffective, which is the case for a few folks, your niece can always change to an interferon or one of the newer disease-modifying drugs.

I would disagree with the idea of stopping Copaxone just because she’s hit the arbitrary five-year point. MS is never cured, so it always needs to be attacked. Stop a DMD only when there’s evidence that another one would be better. Many believe that BG-12 will be the answer, and I hope that's right, but I had thought that about Gilenya too and it clearly wasn't tolerable for me (although it is for others). There is no free ride.

Others preach the LDN gospel: "LDN has fans that claim it is a treatment for all sorts of things, such as: AIDS, cancer, Parkinson’s disease, lupus, rheumatoid arthritis, and Crohn’s disease." (From http://ms.about.com/od/treatments/a/LDN_overview.htm) Sounds like we should all just start taking LDN as infants and never suffer from any disease. Be aware that anyone can write a book and come up with a fad diet, sometimes even a “cure.” Lots of folks on the internet trying to sell stuff. Discuss things with the medical professionals and others close to you that you trust.

[marybenes]

It might also be helpful for her to call Shared Solutions and ask to be paired with a peer support person. That way, she can talk to someone who has been on Copaxone for awhile.

[BigA]

Thanks, I had looked briefly at that book. I'll get it soon. I was thinking about the Wahls' book too, and I bought the China Study (it was only $7).

You will loveit and benefit highly from reading it. It encompases recommendations from China Study and I believe Wahl's book conflicts with it.

You're on the right track!

Here are some podcasts from the professor: http://www.overcomingmultiplescleros...rdpress/?cat=3

[Cat Mom]

Bless you for reaching out, your niece must be very special and I'm sorry she has gotten this diagnosis. You're in good company here, plenty of wisdom, experience and support.

You asked about COpaxone experiences, mine is a positive one. Been on it for 5 years after 2 unsuccessful years of Rebif. Only 2 steroid-worthy flares (Jan 08 and Jan 09) and stable MRIs since the last one. In that 5 years I have become completely mobile again, my left eye is blind but that's from repeated optic nerve damage BEFORE COpaxone. My neuro has no plans on me stopping it.

I do hope whatever she decides to take works well and she starts feeling better and has a bit of control over it. Best wishes.
Jen

[beadyeyes]

I started on Copaxone within 2 months of my diagnosis 11 years ago. It has been good for me until recently with MRI evidence of progression...I was healthy and living a very normal life (with the exception of unrelenting fatigue to varying degrees). There were times when I had doubts about the MS diagnosis being correct...fortunately I did not abandon my treatment for I am sure that I would be much worse off than I am now.

[casey2u]

Wow: thanks for all the replies!

This has been really helpful. I agree with the sense that there will likely be a number of different medical options coming up in the near-ish future, hopefully the Copaxone plus diet and supplements with control things reasonably well (or completely!) for the time being. I am holding out for a cure in her lifetime! Thanks for all the thoughts, ideas, and well wishes, and especially all the sharing of your experiences.

[rainykatie]

i have been on copaxone for 5 months now. the first 2 months were kinda rough with injections, they hurt pretty bad but now its really easy and just part of my bedtime routine. i think she should go on it, there are virtually no side effects.

[casey2u]

I'd suggest Curcumin instead of Tumeric (google: curcumin multiple sclerosis).

I wonder why? Here's my thinking: I added Turmeric to my breakfast a few years ago, not a single other change, and completely controlled and possibly healed a highly disabling ulcer/acid reflux condition that I'd been trying to get relief from for several years. So I know Turmeric works, at least for my stomach. Turmeric isn't going to get studied, since it's even more unlikely to be pharmacologically profitable than Curcumin...

Now I realize in our reductionist world, we want the most powerful form, etc etc, but there may be other unknown components in Turmeric beyond Curcumin (I understand Tea Tree oil has more than a dozen active components). Besides, I've heard that Turmeric is already something like 60% bioavailable, and I only add about 1/4-1/2 teaspoon, so my impression is one doesn't need much (and, depending on the mechanism of action, too much might undermine the process -- compare to LDN). Finally, Turmeric is really cheap.

All that said, she is in fact taking Curcumin, for now. I mispoke