What treatment to choose...

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What treatment to choose...

Postby ssmme » Tue Jul 16, 2013 10:08 am

I have never been on an FDA approved ms drug. I chose the clinical trial route since I was first diagnosed in Aug. 2006. My clinical research coordinator said it's time for me to consider an FDA approved treatment. With the choices out there today where should I begin? The "flavor of the year" is oral. Does anyone think they really work better? I'm overwhelmed and the information is all slanted by the drug companies. In a simple easy to understand non-biased comprehensive review I'd like to see all the drugs in a chart showing side-effects, method of administration, side-effects, etc. Does anyone know of anything like this?

I already treat with diet and supplements - almost zero gluten and dairy free.
Marcia
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Re: What treatment to choose...

Postby euphoniaa » Tue Jul 16, 2013 10:31 am

ssmme wrote: In a simple easy to understand non-biased comprehensive review I'd like to see all the drugs in a chart showing side-effects, method of administration, side-effects, etc. Does anyone know of anything like this?

I already treat with diet and supplements - almost zero gluten and dairy free.


The latest issue of MSFocus magazine had an article comparing most of the MS meds, and I just found it online here: http://eflip.msfocus.org/Spring2013.htm

Look on page 28 for "Everything You Need to Know about Adverse Reactions Associated with the Disease-Modifying Treatments for Multiple Sclerosis." Tecfidera is reviewed on p. 34.

I'm sure the article doesn't tell you "everything" you want to know, but it's a start. :smile:

P.S. Personally, I've had worse reactions to vitamins & supplements (and foods) than anything MS has ever done to me. And, surprisingly, gluten & dairy are just about the only things in my diet that my body NEVER seems to have a problem with. And I keep charts. Go figure. :smile:
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: What treatment to choose...

Postby want2bike » Tue Jul 16, 2013 12:52 pm

Treating your MS with diet and supplements is best. Why would you think now is the time to use drugs? Just because someone tells drugs are the answer that does not make it so. Research shows these drugs do no good and may harm your body. The FDA(Fraud and Deception Agency) is THE problem today. If you listen to the FDA you drink fluoridated water, get the vaccines, put mercury in your teeth, and eat the GMO food. The FDA's job is not to make you healthy. Their policies are responsible for most of the sick people we have today. Don't let yourself be one of their victims. You should think about this real hard before you put these poisons in your body.

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.nytimes.com/2012/07/18/healt ... html?_r=3&

http://www.naturalnews.com/001298.html
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Re: What treatment to choose...

Postby plethora » Tue Jul 16, 2013 3:31 pm

Here is a chart that might help. Good luck with your decision!

Sam

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Re: What treatment to choose...

Postby HarryZ » Tue Jul 16, 2013 3:51 pm

Marcia,

You are faced with the dilemma that most MS patients encounter....what if any MS approved medication to take. It's a tough decision to make but the most important aspect is to be as well informed as possible so you can make the right decision for YOU.

If you listen to the drug companies that make these drugs and many MS docs, you should be on one of these drugs...the sooner the better. But at best it's a "crap" shoot because how do you choose a medication to treat a disease that has no known cause? The drugs that are offered all mess with your immune system, have many side effects and their efficacy is all over the map. The drug companies advertise that the number of lesions in the white matter of the brain are reduced by using their drugs and the number of relapses are lower. Problem here is that white matter lesions don't correlate with MS symptoms and the relapse reductions are minimal.

Some MS patients, of which you can read on this forum, control their MS with diet and alternative medicine. Personally, I believe that doing this is overall healthier and probably as effective as any of the drugs. Of course, there will always be debate with this.

Whatever you decide, the best of luck.

Harry
Last edited by HarryZ on Wed Jul 17, 2013 6:46 am, edited 1 time in total.
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Re: What treatment to choose...

Postby NHE » Wed Jul 17, 2013 1:06 am

ssmme wrote:I have never been on an FDA approved ms drug. I chose the clinical trial route since I was first diagnosed in Aug. 2006. My clinical research coordinator said it's time for me to consider an FDA approved treatment. With the choices out there today where should I begin? The "flavor of the year" is oral. Does anyone think they really work better? I'm overwhelmed and the information is all slanted by the drug companies. In a simple easy to understand non-biased comprehensive review I'd like to see all the drugs in a chart showing side-effects, method of administration, side-effects, etc. Does anyone know of anything like this?

I already treat with diet and supplements - almost zero gluten and dairy free.


Hi Marcia,
Have you had your vitamin D3 level tested? If it's low, then adding D3 and supporting minerals, such as magnesium, might help.

Pierrot-Deseilligny et al. 2012 reported that every 10 nmol/L increase in 25-OH-D level, up to 110 nmol/L, was associated with a reduction in the relapse incidence rate of 13.7%.

http://www.ncbi.nlm.nih.gov/pubmed/22783368

A mere 30 nmol/L increase in 25-hydroxy vitamin D3 puts it in a higher efficacy range than half of the drugs listed in the chart plethora posted with a 41% reduction in relapses.

Note: to convert ng/mL 25-hydroxy vitamin D3 to nmol/L (nM) multiply by 2.496.
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Re: What treatment to choose...

Postby euphoniaa » Wed Jul 17, 2013 6:33 am

ssmme wrote:I have never been on an FDA approved ms drug. I chose the clinical trial route since I was first diagnosed in Aug. 2006. My clinical research coordinator said it's time for me to consider an FDA approved treatment.


ssmme, I see that you also just posted on the Campath forum, since that is the drug you've been taking in the clinical trial you referred to. Correct?
Here's a link: campath-f12/topic22645.html

So, that means you've already been taking one of the most powerful ones (see plethora's chart above) -- Campath, which is Alemtuzumab, and will be named Lemtrada when it's approved for MS. Alemtuzumab has the highest rating for Adverse Events of all the drugs on the chart.

You should probably consider that your treatment with Alemtuzumab may also affect your future DMD choices. Maybe someone else here who's more familiar with Campath can weigh in on that issue. And be sure to discuss with your neuro.

And as a general FYI, the story of Campath/Alemtuzumab's journey from leukemia treatment to MS treatment as Lemtrada is on this thread: campath-f12/topic21942.html

Good luck with your decision!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: What treatment to choose...

Postby euphoniaa » Wed Jul 17, 2013 7:38 am

P.S. I'll also add that, on this chart most of the meds have their own forums here, including the newly approved meds:

BG-12 is now the oral med Tecfidera (has its own forum here)
Rituximab (is found in the Rituxan forum here)
Teriflunomide is now the oral med Aubagio (has its own forum here)
Alemtuzumab, or Campath (has its own forum, soon to be re-named Lemtrada)

plethora wrote:Here is a chart that might help. Good luck with your decision!

Sam

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Re: What treatment to choose...

Postby ssmme » Wed Jul 17, 2013 1:45 pm

Thanks for the responses. I have to rule out alemtuzumab (limtrada) since I've been in the trial. I am JVC positive so Tysabri is out. I know that I won't stick to the injectables - I will put off taking the shot or skip it using the slightest of excuses. I don't have faith in any treatment and haven't had a ton of luck with diet and supplements although I am still almost gluten and dairy free and have taken vitamins and supplements for years. At this point I'm tired of fighting. I figured I can try some dmd for a while to see if there is any difference. I'm pretty sure it's only going to make me feel worse from the side effects. No one that I know that has ms is on dmd's any longer and their disability differences are all over the board. If I go on something for a while I can get everyone off my back - family-neuro-friends might leave me alone instead of harping on me to be on something.
Marcia
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Re: What treatment to choose...

Postby HarryZ » Wed Jul 17, 2013 6:02 pm

ssmme wrote:Thanks for the responses. I have to rule out alemtuzumab (limtrada) since I've been in the trial. I am JVC positive so Tysabri is out. I know that I won't stick to the injectables - I will put off taking the shot or skip it using the slightest of excuses. I don't have faith in any treatment and haven't had a ton of luck with diet and supplements although I am still almost gluten and dairy free and have taken vitamins and supplements for years. At this point I'm tired of fighting. I figured I can try some dmd for a while to see if there is any difference. I'm pretty sure it's only going to make me feel worse from the side effects. No one that I know that has ms is on dmd's any longer and their disability differences are all over the board. If I go on something for a while I can get everyone off my back - family-neuro-friends might leave me alone instead of harping on me to be on something.


Marcia,

Please do not choose to go on a medication because your family, friends and neuro are all on your case! That would be a big mistake. They aren't living with this disease, YOU are and nobody knows your body better than yourself. Most of your friends and likely most of your family don't understand what it is like to suffer from MS. Maybe going on a drug would make them feel better but it could be a bad decision for you.

Harry
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Re: What treatment to choose...

Postby HappyPoet » Wed Jul 17, 2013 6:13 pm

ssmme wrote:Thanks for the responses. I have to rule out alemtuzumab (limtrada) since I've been in the trial. I am JVC positive so Tysabri is out. I know that I won't stick to the injectables - I will put off taking the shot or skip it using the slightest of excuses. I don't have faith in any treatment and haven't had a ton of luck with diet and supplements although I am still almost gluten and dairy free and have taken vitamins and supplements for years. At this point I'm tired of fighting. I figured I can try some dmd for a while to see if there is any difference. I'm pretty sure it's only going to make me feel worse from the side effects. No one that I know that has ms is on dmd's any longer and their disability differences are all over the board. If I go on something for a while I can get everyone off my back - family-neuro-friends might leave me alone instead of harping on me to be on something.

Hi Marcia,

Some considerations for you to ponder:

1. Have your C1 vertebra (Atlas) checked (simple X-rays) for misalignment which can interfere with CSF flow, venous and arterial blood flows, and Vagus nerve transmission. Correction by an AO (Atlas Orthogonal) chiropractor is effective, easy, painless, and has no side effects. Read in its entirety the first link below; for the second link, start reading from the last page and go backward a bit, then start at the first page and go forward.

Link to "cheerleader's excellent self-report on her Atlas adjustment" in the CCSVI subforum: chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic22237.html Fyi, cheer runs the "CCSVI in Multiple Sclerosis" Facebook page.

Link to Dr. Flanagan's (uprightdoc) thread, "CCSVI and CCVBP," in the CCSVI subforum (have you heard about CCSVI or CCVBP treatment yet?) chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic14005-3375.html In short, CCVBP (Dr. Flanagan's theory) contends that brain/cord lesions happen due to problems that start first with the spinal column (vertebrae).

2. I know that dealing with do-gooders is hard, especially with those who want themselves to feel better by knowing you're on a DMD. Make your decision with concern FOR YOU, not for your doctors, family, nor friends who are harping on you. Try to politely but firmly tell them all that your body has already been on a heavy DMD for a while and that you need time to consider all other options. Sticking up for oneself can be difficult, but I urge you to try even though you're tired of fighting--sometimes, despite our "MS," we're stronger than we think we are. (I see HarryZ has already spoke of this, but I'm leaving my comment hoping that you'll better understand this perspective.)

Best wishes.
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