Reply
 
Thread Tools Display Modes
Old 07-28-2009, 01:00 PM #1
Kitty's Avatar
Kitty Kitty is offline
Wisest Elder Ever
 
Join Date: Jan 2008
Location: Deep South
Posts: 21,576
15 yr Member
Kitty Kitty is offline
Wisest Elder Ever
Kitty's Avatar
 
Join Date: Jan 2008
Location: Deep South
Posts: 21,576
15 yr Member
Default

Quote:
Originally Posted by tkrik View Post
Knowing how sensitive I am to meds, I have often wondered if the dosage of the C is too high for me and if the dosage of any of CRABs is too low or too high for others. They have a set dosage and that's it. It is not like other meds that you can go up/down in dosage to obtain the correct dosage for YOU. But I wonder if coming up with the correct dosage based on you would be more beneficial and lessen the nasty side effects. (Just a thought here.)

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.
__________________
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.
Kitty is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
tkrik (07-28-2009)
Old 07-28-2009, 01:37 PM #2
lady_express_44's Avatar
lady_express_44 lady_express_44 is offline
Grand Magnate
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
lady_express_44 lady_express_44 is offline
Grand Magnate
lady_express_44's Avatar
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
Default

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
__________________
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
.
lady_express_44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
tkrik (07-28-2009)
Old 07-28-2009, 02:51 PM #3
Blessings2You's Avatar
Blessings2You Blessings2You is offline
Elder
 
Join Date: Jan 2008
Location: Vermont
Posts: 6,726
15 yr Member
Blessings2You Blessings2You is offline
Elder
Blessings2You's Avatar
 
Join Date: Jan 2008
Location: Vermont
Posts: 6,726
15 yr Member
Default

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.
__________________
*
*
*

**My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (Psalm 73:26)
Blessings2You is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
tkrik (07-28-2009)
Old 07-28-2009, 03:48 PM #4
Kitty's Avatar
Kitty Kitty is offline
Wisest Elder Ever
 
Join Date: Jan 2008
Location: Deep South
Posts: 21,576
15 yr Member
Kitty Kitty is offline
Wisest Elder Ever
Kitty's Avatar
 
Join Date: Jan 2008
Location: Deep South
Posts: 21,576
15 yr Member
Default

Quote:
Originally Posted by Blessings2You View Post
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.

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.
__________________
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.
Kitty is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Lady (07-28-2009), SallyC (07-28-2009), tkrik (07-28-2009)
Old 07-28-2009, 06:31 PM #5
Riverwild's Avatar
Riverwild Riverwild is offline
Magnate
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Default

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.
__________________
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!
.
Riverwild is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ewizabeth (07-28-2009), tkrik (07-28-2009)
Old 07-28-2009, 06:54 PM #6
tkrik's Avatar
tkrik tkrik is offline
Wise Elder
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
tkrik tkrik is offline
Wise Elder
tkrik's Avatar
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
Default

Quote:
Originally Posted by Riverwild View Post
I had lots of practice in my younger years with recreational "pursuits".
Just choked on my water on this one. Long story short, when the neuro and I decided meds were not going to be the route for the spasticity for me she sent me to PT. The PT was young and just out of college. I was explaining my experience with the meds and told her that as a child of the 60's and 70's I apparently didn't do enough drugs. Couldn't tolerate it. LOL
tkrik is offline   Reply With QuoteReply With Quote
Old 07-28-2009, 09:57 PM #7
Lady's Avatar
Lady Lady is offline
Senior Member
 
Join Date: Aug 2006
Location: East Coast USA
Posts: 1,174
15 yr Member
Lady Lady is offline
Senior Member
Lady's Avatar
 
Join Date: Aug 2006
Location: East Coast USA
Posts: 1,174
15 yr Member
Default

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
__________________
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.
Lady is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
tkrik (07-28-2009)
Old 07-28-2009, 06:23 PM #8
tkrik's Avatar
tkrik tkrik is offline
Wise Elder
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
tkrik tkrik is offline
Wise Elder
tkrik's Avatar
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
Default

Quote:
Originally Posted by Blessings2You View Post
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.
Great comment B2Y. Who does determine this? And is there a way they can test to make sure you are at YOUR optimal dose. I would think something would show in your blood work chemistry.

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.
tkrik is offline   Reply With QuoteReply With Quote
Old 07-28-2009, 10:48 PM #9
lady_express_44's Avatar
lady_express_44 lady_express_44 is offline
Grand Magnate
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
lady_express_44 lady_express_44 is offline
Grand Magnate
lady_express_44's Avatar
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
Default

Quote:
Originally Posted by tkrik View Post
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.
http://www.thisisms.com/downloads/Co..._Other_Day.pdf

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
.
lady_express_44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
tkrik (07-28-2009)
Old 07-29-2009, 10:36 AM #10
tkrik's Avatar
tkrik tkrik is offline
Wise Elder
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
tkrik tkrik is offline
Wise Elder
tkrik's Avatar
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
Default

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. This was her 2nd time with this stuff.

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.
tkrik is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Lady (07-29-2009), SallyC (07-29-2009)
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Medication Help craigyj2005 New Member Introductions 3 12-27-2007 08:29 AM
medication mary fuller New Member Introductions 1 11-07-2007 02:07 AM
medication mary fuller New Member Introductions 3 11-01-2007 12:18 AM
New Medication for PN coaster1robert Medications & Treatments 0 08-08-2007 02:37 PM
OT: CRABS Crafts or Get the most 4 your $ wayleaf Multiple Sclerosis 4 09-30-2006 02:46 AM


All times are GMT -5. The time now is 06:55 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is 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.