Reply
 
Thread Tools Display Modes
Old 07-28-2010, 10:41 PM #11
KajunButterfly's Avatar
KajunButterfly KajunButterfly is offline
Member
 
Join Date: Jan 2008
Location: Louisiana
Posts: 403
15 yr Member
KajunButterfly KajunButterfly is offline
Member
KajunButterfly's Avatar
 
Join Date: Jan 2008
Location: Louisiana
Posts: 403
15 yr Member
Default

Good for you Dej!! I quit driving for a year once because of panic attacks..sure sucks having to depend on others to go places. So happy for you.
__________________
God never promised a smooth journey, just a safe landing!
KajunButterfly is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dejibo (07-29-2010)
Old 07-29-2010, 06:01 PM #12
ykonstan ykonstan is offline
Junior Member
 
Join Date: Apr 2010
Location: in nj
Posts: 14
15 yr Member
ykonstan ykonstan is offline
Junior Member
 
Join Date: Apr 2010
Location: in nj
Posts: 14
15 yr Member
Default long time user

i've been taking copaxone for 15 years and my condition becomes worse and worse from year to year. so many times i was thinking to stop. my question is how many years did u use it and what made u to stop?
__________________
The destiny plays the person, and the person blows the trumpet
ykonstan is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dejibo (07-30-2010), dmplaura (07-29-2010), SallyC (07-29-2010)
Old 07-29-2010, 10:38 PM #13
dmplaura's Avatar
dmplaura dmplaura is offline
Magnate
 
Join Date: Jul 2008
Location: Moncton, NB, Canada
Posts: 2,195
15 yr Member
dmplaura dmplaura is offline
Magnate
dmplaura's Avatar
 
Join Date: Jul 2008
Location: Moncton, NB, Canada
Posts: 2,195
15 yr Member
Default

Quote:
Originally Posted by ykonstan View Post
i've been taking copaxone for 15 years and my condition becomes worse and worse from year to year. so many times i was thinking to stop. my question is how many years did u use it and what made u to stop?
Less than 1 year was enough to convince me that it definitely was polluting my body more so than helping it.

Someone called it 'draino'. I think they were right on the money!

(no offense to those who are taking it and are stable with their diseases, it just wasn't for me, and my body was quick to let me know)
__________________
2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
dmplaura is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dejibo (07-30-2010)
Old 07-29-2010, 11:20 PM #14
Erin524's Avatar
Erin524 Erin524 is offline
Elder
 
Join Date: Dec 2007
Posts: 5,020
15 yr Member
Erin524 Erin524 is offline
Elder
Erin524's Avatar
 
Join Date: Dec 2007
Posts: 5,020
15 yr Member
Default

I think I was on it for two years (started september, maybe? of 2007, stopped last year in May or June)

I wasnt the most compliant patient with the C tho. Sometimes I'd go weeks without stabbing myself, but sometimes I'd be good for 3 or 4 months.

I think I did feel worse on the C. I think it was the side effects that were making me uncomfortable... The C was probably causing me to get yeast infections all the time. I havent had the yeastie beasties for at least 5 or 6 months. Seems like it took from May/June of last year till February of this year for my body to clear up and recover from that. (sorry if that's TMI)

I also felt really jumpy all the time while I was on the C...anxiety and I was really easily startled.

I have some anxiety now, but I think that's from the worry I've had about the flare that's been picking on me this summer.
__________________
~ Never do anything that you wouldn't want to explain to the paramedics. ~ Author Unknown ~

~ "Animals have two functions in society. To taste good and to fit well." ~ Greg Proops, actor ~
Erin524 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dejibo (07-30-2010)
Old 07-30-2010, 08:42 AM #15
Dejibo's Avatar
Dejibo Dejibo is offline
Elder
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Dejibo Dejibo is offline
Elder
Dejibo's Avatar
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Default

I was on it for almost exactly 3 years. it took more than a year for it to become effective on me, but as that year marched forward I had bizarre symptoms.

extremely dry eyes (to the point of punctal plugs)
psoraisis. Skin behind my ears was cracked open
unstable moods
Quick to severe anxiety that got worse over time.
exhaustion. not MS fatigue, I was wrung out and couldnt do much.
inability to focus on more than one task at a time.
didnt feel safe driving. I got lost easily, and made stupid mistakes.
my skin was so dry it was cracked
my hair was falling out
I have HUGE dents in my fat pads where I injected
Racy heart, palpations,heavy chested after the injection.
skin rashes. off and on.nothing that would stay.
wild dreams
liver pain, pancreas pain and several episodes of pancreatitis.
my stomach crawled to a stop. it took 12 hours to pass water thru my tummy
as time marched forward, meds stopped working on me. Took twice as much meds as normal for same effect that I used to get with one. Now that I am not on Copaxone, I take ONE pill not two, as it works again.

Weird things that the MDs all say couldnt possibly be related to C.


I struggled for the last year. My DH was terrified because the MDs all told him how disastorous it would be for me to stop. Kept telling him the next relapse may land me in a chair, or blind me. That even tho I felt unwell on the stuff it was important to stay with it. I failed off of interferons because it made my liver enzymes go sky high. Copaxone was my last hope unless I was willing to go to Tysabri. So for a year the DH and I argued, researched, and had a tug of war about what to do.

After just one week off the meds, it was like someone handed me my head back without the cob webs. I was able to cook again. I could follow the recipe. I was able to clean again. I had the stamina to stay with it.I was able to drive again, it was like someone took a veil off my face and I could see again.

How much is placebo? how much is actual med? I dont know, but I do know that with each passing day I feel better. I have handled all my cat stressors and have not crawled in bed, in tears begging the DH to take over for me.
__________________
RRMS 3/26/07
.

Betaseron 5/18/07
.

Elevated LFTs Beta DC 7/07
Copaxone 8/7/07
.



.
Dejibo is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
hollym (08-02-2010), SallyC (07-30-2010)
Old 07-30-2010, 11:53 AM #16
gonnamakeit gonnamakeit is offline
Member
 
Join Date: Oct 2006
Location: Arizona
Posts: 392
15 yr Member
gonnamakeit gonnamakeit is offline
Member
 
Join Date: Oct 2006
Location: Arizona
Posts: 392
15 yr Member
Default

My friend that I met at my MS group also was on C and when she stopped it she had vast improvements just like you.

I am glad that you are better now. Denise has improved dramatically in the 10 months I have known her and I hope you get the same response.

gmi
gonnamakeit is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (07-30-2010)
Reply


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
Driving !! SallyC The Stumble Inn 19 09-13-2009 09:42 AM
Need to ASk who is driving? CZZ74 Reflex Sympathetic Dystrophy (RSD and CRPS) 18 05-16-2009 11:20 AM
Driving Twila27 Thoracic Outlet Syndrome 2 04-24-2008 11:52 PM
driving momzpeachy Thoracic Outlet Syndrome 10 03-30-2007 05:54 PM


All times are GMT -5. The time now is 06:38 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.