I was recently diagnosed with rrms. Not sure if this is the correct place to post this. I have been doing a lot of research and wanted to know if anyone is not taking medication. I was prescribed Copaxone but I am scared to start it. From what Ive read I am thinking I may get the same results that I would with the meds with diet and supplements. This might sound crazy but I am scared of the medication. If the medication has a 29% possible reduction in symptoms and diet can do the same without side affects, then wouldn't diet be better. So confused and scared.
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I would suggest that you post a similar question in the General Questions & Answers forum, since the answers you get here may be weighted toward diet & supplements and you'll need as wide a perspective as possible to make a good decision for yourself.Originally posted by tinafal View Post
My own journey started with Copaxone, then LDN, and now that I'm Secondary Progressive I'm handling my MS with diet/supplements/meditation. Personally, I wouldn't recommend not taking one of the proven disease modifying drugs when you're RRMS. The evidence for diet & supplements isn't nearly as strong as for the drugs, and 29% is better than a "maybe" IMHO.
There's nothing to prevent you from doing both things, though--taking Copaxone and using diet/supplements. In fact, that's what I did myself, and I know many other people with MS take the same route.
BTW, with the disease modifying drugs you're not looking for reduction in symptoms as much as slowing of progression and having fewer/shorter exacerbations. You may not necessarily feel better once you're on Copaxone, but it may still be working for you in terms of the course your MS takes.
I hope you're able to get this sorted out and make a decision that seems right to you. Please feel free to ask more questions here, and on the General forum as well.
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Copaxone is nothing to be scared of, in fact I’d be scared of having a major relapse and think I had not everything I could to prevent it.
Also I have been on two other DMD drugs and Copaxone shoots are the best; it sub-q ( meaning you inject just under the skin into a fatty area, not into the muscle), supper sharp needle makes it painless, and the rest of side effects is vary low.
First few times I was a little nervous but before long it just became part of my morning routine, like brushing my teeth and getting dress.
On the 29% think of it like this, Copaxone reduces 29% then you add diet and increase it to 37%, and then add supplements and vitamins and increase it even more, and then add exercise, meditation/stress removal and do whatever so you can to get to as close to 100% as possible.
Trust me Copaxone is nothing to fear, and is far easier the diet, excise, learn to control stress, and even easier then taking multiple supplements.
The only side effect I have is that now cry easily and deeply at some TV shows.Give life meaning, live life by the 9 Noble Virtues.Comment
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Scared about medication
Hi Tina,
I can really full understand your fear about taking that Copaxone.
First of all, anyway you will have to change your noorishment habits, to avoid bad food combinations, to look at your lifestyle, to avoid stress, to go earlier to bed, a.s.o. Let us call that "new diet". You have right, that has to be changed.
Many advices might be there with good intentions and meaning that Copazone would be the solution. But they don't know the effect on the long therm in their body. Let them talk after a few years, if they would do the same again. I heard many regrets from the patients, especially because after that they want to recover again from their state taking the natural path, and they found out that it is more difficult to get your health back after taking that medication, than without.
But there are many also who can not imagine to take this medication life long, just for postponing the apearence of the symptoms and so they search for an alternative way. They know, it must be something else, something natural to bring you back to your nature, to that intelligence in your body which keep us alive and where all the knowledge is there for us.
So, why not to trust your instinct, which is in a natural way against something what is not in harmonie with your own nature?
As I sad, food habits to change will be required, but not enough to stop the progressing of this degenerative disease. You need a really good therapy and you have good chances especially because you are in the beginning stage and I suppose also young. If you search you will find the way.
Otherwise I can also help you if you want.
I wish you All the Best
Originally posted by tinafal View PostComment
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Here are some supplements I recommend for MS:
Vitamin D - 5,000iu daily
Alpha Lipoic Acid - 600mg daily
B-complex (must be taken with Alpha Lipoic Acid)
Curcumin (500mg daily)
Magnesium (600mg daily)
Fish Oil
Flax Oil
Google each of these supplements with "multiple sclerosis" and you'll learn why.
Follow a healthy diet and lifestyle.
...and see how you do for six months or so. The efficacy of the DMDs is only around 30% and even less impressive compared to placebo in the two year clinical studies. People who have only taken a DMD for less than five years have a limited perspective because they are in the very early stages of what is most often a very slowly progressing disease.
Even your neuro has a limited perspective. Your neuro is most likely only focused on drugs not diet and lifestyle. There will never be a double-blinded, placebo-controlled clinical study of supplements and a healthy lifestyle vs. an interferon or Copaxone.
Finally, look into LDN. It's a pill, non-toxic, cheap, and lot's of MSers take it. It's certainly worth a try before injecting yourself with a drug that makes you feel like you're coming down with the flu, or makes you feel depressed, or leaves welts/bruises on your body, may be toxic to your liver, costs a fortune, is only shown to be 30% effective, and may have absolutely no value controlling progression of the disease in the long-term.
Go to these websites to learn more about LDN:
www.LDNaware.org
www.lowdosenaltrexone.org
www.LDNscience.org
www.LDNers.org
Your neuro may or may not know much about LDN. It's an off-label use of a generic drug for MS and consequently, does not have the support of armies of big pharma marketing and sales teams.
Do your research. Listen to your body. Make decisions you feel comfotable with.Comment
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I don’t know about green tea supplements, but like I posted in anther thread Green Tea Suppresses Inflammatory Autoimmune Response.
Suppressing your Inflammatory Autoimmune Response is what DMDs do, so anyone not taking a DMD should look into green tea.
And like I said before, why not do both?
Because on the caffeine I personally want to limit how much green tea I drink, plus like all things diet, balance balance balance! Some green tea, some almond milk, some carrot juice, some rice milk, and etc.Give life meaning, live life by the 9 Noble Virtues.Comment
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meds
I was diagnosed with rrms in 2007, went on Avonex, hated the side effects, took myself off it tail end of 2008, had a flare up almost immediately. Had relapses when on Avonex also. Have not been back on meds, do not like how Avonex felt & do not want to inject myself with something, ANYTHING daily. I would rather focus on diet & take supplements. So far so good, wish you the best on your journey.
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For clarity, the often confused "30%" does not mean that you as an individual may only expect a 30% reduction in relapses. That percentage of relapse reduction first, is the number when compared to placebo in clinical trials and second, refers to the average reduction the patients on the drug as a whole experienced. It is not a situation where all Copaxone using patients had 70% of the usual number of relapses.Originally posted by knuckle View Post
It is an average for each group. The average reduction of relapses for the patients in the drug group was approximately 30% lower than the average in the placebo group.For Copaxone, these averages were: 1.19 in patients (125 people) taking Copaxone and 1.68 (126 people) for those receiving placebo, over 2 years. A 29% difference in favor of Copaxone.
Also, the percentage of relapse free patients on Copaxone? 56% The percentage of people on placebo? 28% Progression free? 80% on Copaxone and 52% on placebo. You can see that slightly more than half of the patients in the drug group had no relapses at all. Obviously that means that 48% did. It's also obvious that 28% on placebo were relapse free as well.
No one can say if anyone will fall into any one of these groups. A drug may do nothing, everything or something in the middle. The same can be said for any approach to treatment. I'm not saying any one approach is better than another.
Diet, supplements and exercise are important and I am not denying that it helps many people. I just wanted to comment on the "30%". I recommend everyone researches every option available to them and do what they feel is best for them whatever it might be.
I agree, though I don't think it's a matter of neuros' perspective. I think it's a matter of practicality. Unless the researchers locked up and literally fed every bite to the participants for the duration of the trial, I have no idea how any of the results could be trusted.Even your neuro has a limited perspective. Your neuro is most likely only focused on drugs not diet and lifestyle. There will never be a double-blinded, placebo-controlled clinical study of supplements and a healthy lifestyle vs. an interferon or Copaxone.
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