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Old 05-17-2007, 01:19 PM #11
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Originally Posted by Becca44 View Post
I'm not sure at this point I really want to live with either of those two solutions and am SERIOUSLY considering going off meds all together.

3 weeks ago it was a completely different story but today, I'm ready to ditch the meds. We'll see how I feel in a week or two but really, I may not be up for this.

:-/ sigh.

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It just sucks all the way around doesn't it.....you feel like your damned if you do and damned if you don't
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Old 05-17-2007, 01:37 PM #12
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Originally Posted by Becca44
I'm not sure at this point I really want to live with either of those two solutions and am SERIOUSLY considering going off meds all together.

3 weeks ago it was a completely different story but today, I'm ready to ditch the meds. We'll see how I feel in a week or two but really, I may not be up for this.

:-/ sigh.

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Originally Posted by Snoopy View Post
It just sucks all the way around doesn't it.....you feel like your damned if you do and damned if you don't
AMEN!!

More and more PwMS are coming to this conclusion, Becca. You are not alone and some Doctors are agreeing.
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Old 05-17-2007, 01:38 PM #13
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It just sucks all the way around doesn't it.....you feel like your damned if you do and damned if you don't
Ain't that the truth, hon??? Oy.

Thanks for the hug.

...and I'm going to follow MSAcorn's suggestion and look into imuran, see what that's all about.
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Old 05-17-2007, 02:37 PM #14
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Originally Posted by ewizabeth View Post
Thanks Cheryl,

The doctor was extremely disappointed with me dropping out of the CDP323 trial waiting list, but he'll get over it...

BTW, I sent you a PM.
Yes you are right! He will get over it!

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Old 05-17-2007, 03:26 PM #15
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Originally Posted by SallyC View Post
AMEN!!

More and more PwMS are coming to this conclusion, Becca. You are not alone and some Doctors are agreeing.
Oh, you said, "AMEN" my bad.


Is this true, Sal? I'm seriously thinking about it too. Can't do the interferons and I think C has messed me up. Have you seen an article that dealt specifically with this issue?
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Old 05-17-2007, 05:51 PM #16
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Hi, I am currently (as of Sept 2006) using Betaseron. Before that was one year of Avonex and then five years of Copaxone.

My problem is, each flare is worse. I had a 3-day IVSM/prednisone taper last Oct. and another one last week. I noticed improvement almost immediately after last week's SM (very weak legs before and could barely walk), so that is good. My hope is to keep walking with my rollator or forearm crutches for as long as possible.

My fear is that with all of this medicine, I am destroying my body in addition to the MS. I guess I go back and forth, like so many of you. Fear that I'm not doing enough, followed by fear that I'm getting way too medicated. Ach!
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Old 05-17-2007, 08:02 PM #17
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Originally Posted by azcoyote View Post
Hi, I am currently (as of Sept 2006) using Betaseron. Before that was one year of Avonex and then five years of Copaxone.

My problem is, each flare is worse. I had a 3-day IVSM/prednisone taper last Oct. and another one last week. I noticed improvement almost immediately after last week's SM (very weak legs before and could barely walk), so that is good. My hope is to keep walking with my rollator or forearm crutches for as long as possible.

My fear is that with all of this medicine, I am destroying my body in addition to the MS. I guess I go back and forth, like so many of you. Fear that I'm not doing enough, followed by fear that I'm getting way too medicated. Ach!
I hear you on that Mary Ann. That's what I was afraid of doing IVSM every 3 months for 3 days for the last 6 years. My body was starting to rebel against the steroids. So far, I haven't shown any bone density problems from all the steroids, but I am sure it will show up.

I couldn't tolerate Copaxone. I am hoping that I get some relief with whatever I am on right now in this clinical trial.
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Old 05-17-2007, 09:27 PM #18
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Originally Posted by azcoyote View Post
Hi, I am currently (as of Sept 2006) using Betaseron. Before that was one year of Avonex and then five years of Copaxone.

My problem is, each flare is worse. I had a 3-day IVSM/prednisone taper last Oct. and another one last week. I noticed improvement almost immediately after last week's SM (very weak legs before and could barely walk), so that is good. My hope is to keep walking with my rollator or forearm crutches for as long as possible.

My fear is that with all of this medicine, I am destroying my body in addition to the MS. I guess I go back and forth, like so many of you. Fear that I'm not doing enough, followed by fear that I'm getting way too medicated. Ach!
Man, no kidding. It's a constant battle in my thoughts. Did I do this to myself somehow?? Did the chemicals do it? What about the combinations of all my meds? Has anyone even studied the combinations? Ugh, it seriously drives me buggy sometimes.

By the way, welcome, Azcoyote, I didn't even know that you have a name! I will call you MA.
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Old 05-18-2007, 10:33 AM #19
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Originally Posted by Av8rgirl View Post
I hear you on that Mary Ann. That's what I was afraid of doing IVSM every 3 months for 3 days for the last 6 years. My body was starting to rebel against the steroids. So far, I haven't shown any bone density problems from all the steroids, but I am sure it will show up.

I couldn't tolerate Copaxone. I am hoping that I get some relief with whatever I am on right now in this clinical trial.
Cheryl, I know, it is such a tough decision. Speaking of which, I just had a bone density scan yesterday, and I have osteopenia in both hips. Guess my doctor will be adding yet another medicine to my line-up soon!

I hope your clinical trial goes smoothly and you get relief. I admire you for doing a trial.
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Old 05-18-2007, 10:54 AM #20
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Originally Posted by AfterMyNap View Post
Man, no kidding. It's a constant battle in my thoughts. Did I do this to myself somehow?? Did the chemicals do it? What about the combinations of all my meds? Has anyone even studied the combinations? Ugh, it seriously drives me buggy sometimes.

By the way, welcome, Azcoyote, I didn't even know that you have a name! I will call you MA.
Thanks for the welcome AMN. Feel free to call me MA, that's great. I know you from another board, but what can I call you?

It is so scary trying to make the decision of whether or not to begin or end medicines for this or any disease. I doubt myself on nearly every decision that comes up during the day, and I can actually drive myself and my DH batty with it. Even little things like where to hang up the hummer feeder can have me second guessing myself! Wish I could just hang tough, make a decision, and then move on!
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