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#1 | |||
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Wisest Elder Ever
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Absolutely......the CRABS cannot be a "one size fits all" medication. I believe you should listen to your body and do what feels right for you. Just because one person is on a full dose doesn't necessarily mean that dosage is right for everyone. If it feels bad, tweak it till it feels better. If a full dose gives you terrible sx then lower the dose until the sx are tolerable. MS is bad enough without the medications causing more problems.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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"Thanks for this!" says: | tkrik (07-28-2009) |
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#2 | |||
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Grand Magnate
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Even with something as minute as LDN, people have differences in efficacy and tolerance. It really stands to reason that they would with most any drug.
However, the problem is that these drugs don't really have a way to measure their effectiveness. If a person dropped to 1/2, how would they know if this had a negative impact on efficacy? Copaxone has undergone 2 small studies at 1/2 dosage, and was proven equally effective ... and Rebif is basically just twice the dosage of Avonex, with statistically EQUAL efficacy rates. It wouldn't surprise me if 1/4 or 2 times the dosage would give a similar efficacy rates, to be honest. It's always just a crap shoot, isn't it? Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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"Thanks for this!" says: | tkrik (07-28-2009) |
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#3 | |||
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Elder
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I've been wondering about dosage, frequency, etc. for Copaxone but can't really find any info except from the manufacturer, and opinions on message boards.
The only "advice" I've gotten from my neuro is, "Well, I wouldn't skip any." Or WHAT?? If I skip a day or a week, does it evaporate from my system and I have to start over? If I shoot six times a week instead of five, will it totally negate the benefit of it? It's very frustrating to give myself a shot every day with the philosophy of "can't hurt, might help" when it might not even be true. *sigh* I'd also like to know more about who decided the one-size-fits-all dosage, how that was determined. Thanks for starting this thread.
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* * * **My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (Psalm 73:26) |
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"Thanks for this!" says: | tkrik (07-28-2009) |
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#4 | |||
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Wisest Elder Ever
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Of course the manufacturer is going to advise you to take a full dose. The more you use the more you have to refill! Like Cherie said.......it's just a crap shoot. It might work. It might not. I just got tired of being a guinea pig for big pharma. ![]()
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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#5 | |||
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Magnate
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Good post, my twin sistah of a different mother!
I'm on the other side of the coin, with a very high tolerance for side effects and that stuff. I had lots of practice in my younger years with recreational "pursuits". For the most part, I don't have side effects. I watch for them, but nothing happens-USUALLY! I cannot take flexeril. It leaves me drooling on the couch even at a very low dose, not that that side effect is a bad thing at certain times, like when you have been struggling with pain and agony for a lengthy period of time. I just don't want to be that way every time I take a pill. I have none of the reactions that others report with baclofen. I never did. I even questioned whether it was working, until the first time I tried to skip it completely. It works, and works well for me when I need it to. The drug companies use a dose that has proved to work well across the spectrum of patients trialed. It does not mean it's the correct dose for everyone and there will always be people with a more noted reaction than others. I think I am just lucky that I am at the tolerant end.
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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#6 | |||
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Wise Elder
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#7 | |||
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Senior Member
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Definitely as interesting point tkrik. Just how do they know?
We could have a 250 lb man taking "C" and a 125 lb women. Is the fat level the same for injection distribution purposes? Or what about one who metabolizes an oral drug quickly, and maybe one who absorbs drugs slowly. The ideas on this are endless. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Speaking of "C", there is a new clinical trial on "C". It will consist of two different formulations. Maybe pain and injection site reactions will be stopped. Safety of New Formulation of Glatiramer Acetate (Song) Purpose The purpose of this study is to compare injection-site reactions and pain associated with injections of the approved formulation of Glatiramer Acetate (GA) versus investigational formulation of GA. In addition, the investigators will evaluate the side effects of the two formulations of GA. Study Start Date: July 2009 Estimated Study Completion Date: November 2009 Estimated Primary Completion Date: November 2009 (Final data collection date for primary outcome measure) http://www.clinicaltrials.gov/ct2/sh...s=teva&rank=15
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LADY May happiness be at your door. May it knock early, stay late, and leave the gift of good health behind. "Life is what it is". We can only focus on controlling those things we can control, we must let go of the things we can't. |
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"Thanks for this!" says: | tkrik (07-28-2009) |
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#8 | |||
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Wise Elder
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Cherie - Thanks for your post. I haven't heard about those small studies that were done. Do you have a link of where you read this or saw this? I have a neuro appt in a couple of weeks and may bring that up. It would be great if I could share the small study results with her. |
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#9 | |||
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Grand Magnate
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Quote:
Cherie
__________________
I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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"Thanks for this!" says: | tkrik (07-28-2009) |
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#10 | |||
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Wise Elder
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Thanks both Lady's. I read them both and will be talking to the neuro about them when I go. I don't mind doing the C everyday if that's what I need to do in this crap shoot but I do mind the toxic feeling.
When DD19 was a wee little one she had to have some dental work done. She was about 2. She had terrible teeth and they attributed it to her being such a big baby at birth. Poor thing. Anyhow, they gave her Demerol and quite frankly I called it Demonall. She got so out of hand that they asked me if I wanted to come back another day or put her in a restraint. I chose the restraint. I was not going through that again. ![]() Anyhow, the point this "story" is that the dentist told me that sensitivities to medications tends to run in families. I thought that was interesting as most of my family is that way. DD19 is still that way yet DD17 is not that way. She can tolerate far more that I. |
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