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Old 10-23-2008, 06:38 PM #11
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The thisisms.com boards have a forum on campath....I've read it - and was just not impressed - people who have had the treatment have posted there. Looks like a nightmare to me - but if it helps, then I guess it's worth it? I got nervous when I read that some patients have worsened disability. Uh oh, no way for me!

Of course, I was a lab rat for HiCy/Revimmune - and I had no ill effects and only improvement

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Old 10-23-2008, 06:41 PM #12
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Yep, I'm afraid, it sounds like another damn poison..
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Old 10-24-2008, 10:24 AM #13
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When my son first heard this story reported on the news they touted it as a miracle "cure" for MS. saying that it "reversed myelin damage" and the only side effect they mentioned was body tingling! Talk about misleading! Were they paid by the drug company to just pass over all the other more serious side effects?
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Old 10-24-2008, 10:45 AM #14
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I'm afraid anything that is aimed at stopping our bodies from attacking themselves will have serious side effects. If I've read correctly and the major risks are cytopenias, infections and infusion reactions I don't think that is too bad.

The blood dyscrasias can be monitored for and I think should reverse if the med is stopped. The infection risk sadly is something that I think we will have to gamble on and just be extra carefeul with any of these 'high-power' meds, sigh. Infusion reactions again, I believe, should be fairly mild in most people and possibly treated with pre-medication or in some by stopping the medication.

All in all better than the risk of organ damage, imo. However on the flip side I don't think this study of 300+ people in the 'early stages' is all that impressive. How many of us did great in the first few years? Quite a few I'd guess. Any new advancements is good news because while it might not help all of us or even most of us if it adds another option for one of us fighting this miserable disease I give it a thumbs up.
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Old 10-24-2008, 01:19 PM #15
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I'm in the middle of reading some of the scientific stuff on this drug. There's some scary stuff going on with it. It's probably only going to be used for the worst cases.

There's been 8 deaths associated with it in the trials, and YES, there is PML associated with it.

I'd like to hear from the folks who are in the trials or on it outside of the trials. Anyone here yet?

Like Tysabri, it has been noted that there is an increase in brain volume. It's not noted yet whether the Campath volume increase is due to swelling or actual repair.
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Old 10-24-2008, 01:28 PM #16
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Quote:
Originally Posted by SallyC View Post
Thanks, Mary....I'm sending this to my DD, Julie. This may be a good trial for her To get in on.

Changed my mind...to dangerous for my DD..
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Old 10-24-2008, 01:50 PM #17
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One thing I need to note here is that when you stop the inflammation and damage to myelin, oligodendrocytes can do their job and repair myelin. How much can be repaired is not yet known.

The brain is a marvel. New neuronal pathways can build when a pathway is broken. We just don't know enough yet to say how much and whether the new pathways will do the same work perfectly.

We have a girl here in Maine who had half of her brain removed due to uncontrollabe seizures when she was very young. It was a huge decision for her parents to go ahead with the surgery because the docs just couldn't say what she would have left afterwards. The other half took over and she is FINE now. She does everything normally and is at grade level with the rest of her peers. She graduated high school and is in college now. The scientists who studied her through the years still cannot explain it.
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
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