finally in part 2

A board to discuss the soon-to-be released drug Campath as a treatment for Multiple Sclerosis

finally in part 2

Postby Lars » Tue Feb 17, 2009 10:07 pm

Signed consent forms today (Doc scared the shit out of me). A question to those of you in the know, how long after treatment did it take to get back to an OK physical place, i.e. work, hobbies, general activities etc.?
Thanks,
Lars
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Postby freiguy » Wed Feb 18, 2009 6:14 am

Lars,
I got infused end of July 2008. I don't really think there was a point where I thought "hey I can do what I used to do, I must be getting back to normal". The first 2-3 weeks I felt ok but I could tell that I needed a heck of a lot more rest/downtime than before the infusions. I travel alot for work via the airlines so I needed to make changes there. Being on a plane with a depleted immune system is not a good idea. I was fortunate enough to work from home for several months. But getting back to your question - I would describe it as gaining weight over a number of years. You don't notice a little weight gain as the days go by but then you wake up one morning a few years later and look in the mirror and say "holy $hit I'm fat". Things just seem to get better each day that goes by. Hobbies and work should be fine as long as you know your limit and give yourself enough downtime. One tip I would highly recommend - Take the week off for the infusions and take the next week off to lay low and relax. Anything else just ask.

Fred
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Postby Lars » Wed Feb 18, 2009 8:33 am

Fred,
Thanks for the very well put response! I have had visions of endless days, weeks, and possibly months of trying to recover from the infusions. Not a pleasant thought when combined with the already stunning fatigue from MS.
Take Care,
Lars
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Postby patientx » Wed Feb 18, 2009 8:38 am

Lars,

What did the doctor say that scared the s*** out of you?
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Postby freiguy » Wed Feb 18, 2009 11:06 am

Lars,
I am curious as well about what the doctor said to strike fear in you. I am saying the same stuff to you that Ian and Robin told me when I was getting ready for the first round. I was worried about a bunch of problems and downtime after the week of campath. Everyone is different but my experience is pretty much what they had also. If I had to do it again there is no question in my mind that the answer would be yes.

Later
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Postby Lars » Wed Feb 18, 2009 2:11 pm

You know, I really liked this Doc because he painted a complete picture. His first words to me were "I don't think you should do this". He then spent 20 minutes explaining, in detail, all of the things that could potentially happen. I was aware of everything but hearing it from this Neuro kind of made it all hit home. I really went there wanting to know the possible long term problems connected with Campath regarding ITP, tyroid, infection and so on. I don't want to trade one set of problems for another or even worse, keep one and gain new ones. So, for me, the big question was risk/reward and I'm not sure I ever got an answer to that. I think he did his best to show his support for Campath as the "next generation" while remaining cautious. In the end, he did say he felt I was a good candidate and welcomed me as their FIRST potential recipient of Campath (also scary). I asked if he would, or has recommended Campath to any of his patients, he said yes but only if all other therapies had failed. I have refused CRAB from the onset and I think it was hard for him to understand why I would refuse that and pursue this. I responded that I was interested in the most effective treatment. In other words the "home run ball". I think he accepted that and I also think he believes me to be nuts. I haven't been randomized yet so hopefully this is not all pointless.
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Postby CureOrBust » Wed Feb 18, 2009 5:46 pm

freiguy wrote:If I had to do it again there is no question in my mind that the answer would be yes.
I thought you signed up to "do it again", 12 months after the first.
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after campath

Postby k6ristin » Fri Feb 20, 2009 7:10 pm

At month 9 declared myself "improved" and was able to document so at the 9month exam. Told stories of energy & ability to playfully run after 3 yr old son.
At the end of month 10 I had a confirmed flare up. Basically out of nowhere new sensory symptoms and weakness in my right leg. Decided it was (new) spasticity and has not resolved! Scheduled for 2nd infusion mid-march. Getting MRI soon and looking forward to results! Is my brain better? Are these new symptoms indicative of new damage in my nervous system?

Receiving campath seemed to turn off the progression of my MS for approx. 10 months. Btwn this site and myspace I documented how life was after the infusion. Feel free to venture there to see how it went.

This time it will be a 3-day infusion; I plan on staying home from work that week, and go slow the second week (1/2 days) and go from there.
Dreading the possibility of 6 months of respiratory infections and pondering the use of various pharmaceuticals to fight allergy/infection & the side effects that go along with those. Hoping to not accrue any new symptoms or progress any further. I believe without the campath this past year could have meant a serious decline and am happy i had a 10 month stand still! (though constantly coughing and sneezing)

Best of Luck!
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