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Old 01-16-2011, 04:15 PM #1
reba2295 reba2295 is offline
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Unhappy Medication not doing it's job!

Well I received a call from my neurologist and my MS is getting "worse." According to my recent MRI, two of my "orginal lesions" have increased and I have a new lesion that developed in my left temporal lobe. So that means Rebif is not doing its job, dang it!! He is now putting me on Copaxone, hoping this one does what it is suppose to do!! Just when I was adjusting to rebif (only been on it for 6 months) I have to start all over. What a huge let down! Wrestling with insurance, having a nurse come for a home visit, and adjusting to injecting myself every single day!! I really want to crawl in a hole and never come out. Thanks for letting me vent...
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Old 01-16-2011, 05:18 PM #2
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Hi Reba,

Welcome to NT! I am sorry for the reason that brought you here, but happy that you found us. Was rebif your first dmd? I hope copaxone works for you. While you do need to inject everyday, many people experience success with it. Plus it typically does not have the flu like side effects that the interferons do.
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Old 01-16-2011, 07:33 PM #3
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Hello and welcome.

Many have struggles trying to find the right drug for them. I was on Betaseron and had to move to Copaxone because it upset my liver greatly. I was very disappointed and went kicking and screaming, but Copaxone isnt such a bad drug. No flu side effects and while yes its everyday, you will be surprised how quickly you get used to it.

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Old 01-16-2011, 08:34 PM #4
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Hi Reba, happy to meet you..

I changed from Avonex to Copaxone and found the shot much easier than A's into the Muscle shot. Copaxone was a breeze and no nasty side effects, except that it did not stop my attacks.

Just on LDN and Prozac now and seem to be doing okie dokie.

I hope Copax works for you and your MS progression slows down.
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Old 01-17-2011, 03:52 PM #5
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Default Sorry about Rebif!!

Quote:
Originally Posted by reba2295 View Post
Well I received a call from my neurologist and my MS is getting "worse." According to my recent MRI, two of my "orginal lesions" have increased and I have a new lesion that developed in my left temporal lobe. So that means Rebif is not doing its job, dang it!! He is now putting me on Copaxone, hoping this one does what it is suppose to do!! Just when I was adjusting to rebif (only been on it for 6 months) I have to start all over. What a huge let down! Wrestling with insurance, having a nurse come for a home visit, and adjusting to injecting myself every single day!! I really want to crawl in a hole and never come out. Thanks for letting me vent...
Sorry about Rebif not working. I thought that it took about 1 or 2 years to really see any results of rebif. I have been on rebif for about 7 months. I have MSLifelines working on reimbursement cause I can't afford the ins. copayment. Maybe you need a 2nd opinion. If it wasn't for the autoinjector and thin needle, I wouldn't be on anything. I hate needles and this whole ms thing has seriously cramped my lifestyle. I may not want to crawl in a hole but most days I do want to pull the covers over my head and not get out of bed. I hope that if you do get on the copaxone, it works for you. Just take a deep breath and take one day at a time.
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Old 01-17-2011, 04:27 PM #6
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Sorry to hear you have to change meds...I've been on copaxone for over 2 years now. No real side effects, even though I have to inject daily (when I remember).

Good luck, and keep us up to date on how it's going...
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Old 01-19-2011, 11:48 AM #7
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Are you taking vitamin D supplementation? Some of the literature indicates that keeping blood vitamin D levels high is just as effective (or more) as the DMDs on the market. My MS clinic recommends MSers take 6,000 - 8,000 IU of vitamin D per day.

I used to take copaxone. It personally did nothing for me. At least you don't get the flu like symptoms and you don't have to do the blood monitoring. Make sure you religiously rotate your injection sites or you'll end up with bad lipotrophy.
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Old 01-19-2011, 10:18 PM #8
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Quote:
Originally Posted by jacksonsmommy View Post
Are you taking vitamin D supplementation? Some of the literature indicates that keeping blood vitamin D levels high is just as effective (or more) as the DMDs on the market. My MS clinic recommends MSers take 6,000 - 8,000 IU of vitamin D per day.
At 1000 IU daily my GP mentioned that I take a lot less D than most with MS, but my neuro saw my recent blood workup, including my D level (after 12 hour fast) and said 1000 IU was good for me and to go no higher than.

Again, we're all so very different. I'm a strong believer in the D (D3 more specifically) as well.
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Old 01-20-2011, 05:41 PM #9
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hi reba and welcome.
sorry for the reason you're here. you'll get lots of support and advice.

i've been on copaxone for 8 yrs and luckily have tolerated it well.
i'm very stable and my MS has not progressed; knock wood.

i know it's everyday but it does become routine after a while.
my best tip would be to find the best depth for you to inject the shot.
i also started to use my autoject less and do manual shots. they actually didn't hurt as much and i had less reactions.

in the beginning you will probaby get some reddness and itching. i found ice to be very helpful but some use heat too.

the nurse that comes to your home is very helpful.

good luck and check back with us.
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