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Old 11-14-2009, 12:20 PM   #1
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Copaxone

I have been taking Copaxone for nearly 11 years. My doctor says if an MRI would show no new lesions, that I could possibly stop taking Copaxone. I am 59 years old. Is it wise to stop the treatment?

 
Old 11-14-2009, 02:54 PM   #2
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Re: Copaxone

Are you having no symptoms? come and go symptoms? more consistent symptoms? Does your doctor think you've moved from RRMS to SPMS? Or that if the MS is not progressing, it was a misdiagnosis in the first place?

I'm RRMS, but have no relapsing/remitting episodes ... my earlier symptoms of numb feet never returned ... now it is just consistent tremor, unstable balance, weakening vision, steady fatigue, awkward gait, and vertigo if I tilt my head back and try to look up. I take Copaxone, but the last MRI showed no changes. I remain doubtful that this is MS, although three neurologists have said that it is by looking at MRIs ... I think it is something yet to come, Parkinson's, as that is my family legacy.

My plan is to stay on Copaxone, though, until I retire, truly a leap of faith that it might be holding "progression" at bay ... but when I retire in a few years, I will likely stop this painful injection and rely on the changes I've made in diet and exercise to continue to hold things at bay ... I can't risk that until I finish my career, but then, I will ... still a leap of faith, but one more familiar ...

Both my parents had Parkinson's ... in the days before MRIs, neither of them were subjected to a label of MS and its painful treatments ... they progressed slowly in their later years, and we took care of them as they needed it, but when they were my age they looked exactly like I look today, approaching 60... tremors, balance, vision, awkward gait ...

I regret having allowed this "in the meantime" label to be attached to me, and am afraid to reject the treatment offered. But when I can slow down and stop, I will. If my neurologist suggested now that I could stop, I would. I think this is not MS, but I am in a distinct minority of thought on that.
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Old 11-21-2009, 11:22 AM   #3
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Unhappy Re: Copaxone

Quote:
Originally Posted by Kitten14 View Post
I have been taking Copaxone for nearly 11 years. My doctor says if an MRI would show no new lesions, that I could possibly stop taking Copaxone. I am 59 years old. Is it wise to stop the treatment?
,
Hi,

My name is Sharon and even though i am not replying to your queation i wondered if i could pick your brains to see how you have managed to stay positive and cope with the MS aswell as the injections. I was diagnosed 2yrs ago it affected my eyesight, my balance and i lost the use in the whole of my right side. I have not been back to work since mainly due to the fatigue but i do suffer with back spasms. One day i feel okay and wish i was at work the next im back to square one and in bed for a few days feeling dreadful.

I hope you can give me some inspiration on how to manage as at present i feel i am just getting more and more fedup.

Many thanks
Sharon

 
Old 11-24-2009, 07:36 PM   #4
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Re: Copaxone

In the spring it will be 24 years since I was diagnosed with MS. Those first months were very discouraging. I had weakness in my hands and could hardly hold a pen steady enough to write. I also had weakness in my legs. After several months however, things did go into remission for me. About a year later I experienced some double vision. However after that I did not need to contact a Dr. about my MS for another 11 years. I experienced a flare up in the fall of '98. After that is when I started on Copaxone. I never thought I would be able to give myself shots, but it turned out not to be as bad as I expected. I had been a preschool teacher and felt that I needed to give that up, which is not something that I wanted to do. Things have gone rather well the past ten years. I do have some bladder and bowel issues which is not fun. I also get tired if I'm standing a lot. I am a Christian and my faith in God has been what has keep me going through the difficult days. God has not promised to keep unpleasant experiences away from us, but He has promised to be with us in every situation.

 
Old 11-25-2009, 02:13 PM   #5
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Copaxone

thats a really great response and I hope others will read it and have hope as well...

For most of us, we havent had MS quite as long, but anytime you have to deal with knowing you have a chronic illness, its all about "what if". I think the key to staying positive is to NOT allow yourself to go there....to always take it one day at a time, and to be happy with what we can do, not thinking about what if....

I know I push myself too hard. Too much work, too tough a job- too much traveling and way too much having to stay on top of things...then, I decided to go back to school (doctorate level) again. I must be crazy, right?! But honestly, for me, staying busy, learning and doing new things, and most of all being a productive part of society is what keeps me from getting the "poor mes" and the negative thoughts....Ive been known to go there now and then, but pull myself out by looking at how much worse things could be.

As for the original question - to stop meds or not- Im on Rebif. I dont think anything or anyone could get me to stop using it, unless Radiographically, my doctor said it wasnt working anymore. For me, its all about controlling my MS and not allowing it to control me. I do NOT believe that I would be as stable, if I was not on the drug....so, in my own opinion, if you have been successful on Copaxone, you should stay on it. There is no evidence that it stops working, and there is obvious evidence that it has been working for you. But, again, its all personal. You can always go off it, and go back on it (or another MS drug) down the road...its a risk to do so, as relapsing often happens when you withdraw off the drugs- but it wont happen to everyone.

Take good care..
nikki
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Old 11-29-2009, 10:26 AM   #6
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rosie28 HB User
Unhappy Re: Copaxone

Quote:
Originally Posted by Kitten14 View Post
In the spring it will be 24 years since I was diagnosed with MS. Those first months were very discouraging. I had weakness in my hands and could hardly hold a pen steady enough to write. I also had weakness in my legs. After several months however, things did go into remission for me. About a year later I experienced some double vision. However after that I did not need to contact a Dr. about my MS for another 11 years. I experienced a flare up in the fall of '98. After that is when I started on Copaxone. I never thought I would be able to give myself shots, but it turned out not to be as bad as I expected. I had been a preschool teacher and felt that I needed to give that up, which is not something that I wanted to do. Things have gone rather well the past ten years. I do have some bladder and bowel issues which is not fun. I also get tired if I'm standing a lot. I am a Christian and my faith in God has been what has keep me going through the difficult days. God has not promised to keep unpleasant experiences away from us, but He has promised to be with us in every situation.
Hi,

Thank you for your response, I do not seem to be as lucky since being diagnosed 2yrs ago there is not really a day gone by that I do not suffer. My back seems to be my main problem as I almost always wake up in pain. My right leg gives way at times so am very wary of going anywhere on my own, the fatigue I get is generally in the morning and can take me up until 2pm to get ready. I feel so miserable as I am stuck in the house on my own until 7pm
when my partner comes home. I have become very insecure in our relationship, I never seem to get 100% attention from him. I live in Berkshire and all my family and friends are in Staffordshire I have broached the subject of moving back but all I get is there are no jobs, which I fully understand but how does he know if he has not looked. He is happy in his job and would be there 24/7 if he was allowed. All I get is go out but he does not understand that I am scared of going on my own as I also have epilepsy, the main reason I hate going on my own is I obviously work myself up before I even go anywhere, this then brings on spasm pain in my back andd once that starts it stops me dead in my tracks, this makes me scared that I will be stuck in the middle of town in pain not being able to put one foot infront of the other and everyone staring at me. I really do try to be positve but any kind of stress or argument really knocks me about.
Do you have any advice?

Many thanks
Sharon

 
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