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#1 | |||
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Elder
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I am ready to demand to be taken off of Copaxone...I discontinued injecting in the thighs and back of the arms 2 years ago...thank goodness, because I have a huge swollen area in one thigh now, and craters in my hips and tummy that are really ugly.
I don't wear bikinis anymore, but I still look hideous...stupid drugs... ![]() I'm going to talk to my neuro about this...if he ever calls back... ![]()
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Instant Karma's gonna get you-gonna knock you right in the head...John Lennon |
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#2 | |||
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Elder
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I've been on "break" from Copaxone for...almost a year? My neuro is probably going to fire me. I just can't bring myself to start up again. It wasn't the needles. I have permanent lumps and craters also, but I stopped because I was having mega-anxiety symptoms. Even wondered if I was having heart problems.
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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: | barb02 (02-17-2012), carebear01 (02-17-2012), Debbie D (02-17-2012), dmplaura (02-16-2012), SallyC (02-16-2012) |
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#3 | |||
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Elder
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I too demanded to stop taking Copaxone. My MD pushed very hard to keep me on it. I begged for a year and finally reached my limit when I was riddled with lumps, bumps, craters, psoriasis, couldnt think, couldnt function, was exhausted and simply wasnt able to continue anymore. The MD was upset, but after I presented my arguments and said NO MORE! he stopped fighting me.
its been a while now since I stopped, and week by week I felt stronger, faster, more capable. The dents and craters are still there, but my hair came back in full and thick, my skin cleared up, my brain came back, the fog lifted, and I dont regret it for one minute. I wish you the best of luck with whatever you choose.
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RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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"Thanks for this!" says: |
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#4 | |||
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In Remembrance
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Do what your heart and mind tell you to do. Copaxone is not a cure and it's hurting you more than it's helping you, right now.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | carebear01 (02-17-2012), Debbie D (02-17-2012), Dejibo (02-17-2012), dmplaura (02-16-2012), karilann (02-17-2012) |
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#5 | |||
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Wisest Elder Ever
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Have you tried LDN, Debbie? I think it's worth a try.
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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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#6 | |||
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Magnate
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Don't demand, tell them you're going off Copaxone if you've decided that's what your heart's telling you. Your body, your choice!
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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 |
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"Thanks for this!" says: | carebear01 (02-17-2012), Debbie D (02-17-2012), Dejibo (02-17-2012), karilann (02-17-2012), SallyC (02-16-2012) |
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#7 | |||
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Elder
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I've got the craters too Debbie but none of the others work as well. I'm hoping one of the oral drugs will be safer eventually. I tried Tysabri and the interferons and the side effects were pretty bad. I have some scarring but I'm really careful about rotation. I've been on it for five years total. I hope Dr. Wynn has a good suggestion for you.
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Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
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#8 | ||
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Senior Member
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I am w Wiz- I did 5 years of A and then 5 of R and about 2 of half dose R. Went off because of depression- but they worked. Now completing my 5 year of C in March. I'm not messing w success.
SO gives the 4 shots I can't see well- even uses a headlamp to really check the skin. I give the anterior thighs and belly. We stopped the arms sometime in year 2 and found other places for those shots. I don't worry about the craters- I earned them. Everyone is different as is the disease. ANN |
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#9 | |||
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Member
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I am on Betaseron since 2002 and my injection areas looks like a bruised mine field. People ask me about the bruises and I know they are asking because they think my husband hits me!
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. If you obsess about things that may happen and they don't come true...then you've wasted your time. If it does come true....then you've lived it twice. . |
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#10 | ||
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Junior Member
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I too have multiple craters after injecting C for three years. After awhile I just used my inner thigh and abdominal area...figured I had the most fat in those places. My neuro took me off of C last fall due to heart palps. I was off only for a few months when he wanted me to restart it. I never did but I didn't tell him. My heart palps are very minor now and I wonder if they were because of the C. I have been thinking about retrying it. I called the nurse at shared solutions who told me I was no longer eligible for the pt assistance program and the C has gone up to $4000 per month. Well, this put the kabosh on my even thinking about going back on it. My deductable is $5000, 20% copay after deduct is met and a $7000 out of pocket max. I cannot afford it. After doing some research I see that half of Teva's yearly profit comes from there C sales. It's all disgusting!
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