Three weeks after Campath

sugarmomma · Posted: Fri Apr 11, 2008 11:02 am Post subject: Three weeks after Campath

where to begin?

Well physically things are okay.

I am definitely having a flare up. I guess the fact that I expected it, makes it a little easier to swallow. My flare ups are almost always centered around Optic Neuritis. And for the past week, my vision has been its worst since my diagnosis. Usually it only affects one eye severely (usually my right eye). However the past few weeks, both eyes have been affected and this time my left eye is worse. It's the most severe in the mornings when I first wake up. It takes me a good ten minutes to be able to focus on anything. I am also having serious cognition problems. Simple tasks like talking, writing, typing, memorizing, and understanding have been difficult to do and required large amounts of concentration. And finally I have been getting bouts of numbness, leg cramps and spasticity. The numbness is more severe and more often then ever before. But I going into this things were going to get worse before they got better.

Kristin seems to be experiencing a flare up also, hers seems to affect her actual ability to walk and her energy level. She also seems to have developed an allergy to something because from time to time her rash still comes back. She thinks she may have developed a food allergy. We both caught a similar cold around the same time. Mine started in my throat. I had a WICKED sore throat which lasted for several days. I had a few minor flu like symptoms which ended in lot's of nasal and chest congestion , which I still trying to expel. Kristin's also started in her throat but turned into more of a cold which affected her energy levels more. I had already faced the worst flu of my life a few weeks before the campath, so I was worried when I got the sore throat, but the whole illness was mild esecially considering I have no immune system.

I had a small scare the second week after the infusion where I was showing small bruises all over my body. I went in and saw the doctors but because the bruises where small and more of a greenish color than purple, they agreed to wait till our monthly check-up and blood work before getting alarmed.

In three days we actually go in for our first post-campath check up and our first set of blood work. I am anxious to see the results. It will have been almost a month.

I have turned into a germ freak. I wash everything constantly. I avoid sick people like the plague. I am aware of ALL of my physical contact with people and I constantly use hand sanitizer. This is all a huge change from my previous ways. I have never been too concerned with germs or been very careful about exposing myself to germs.

Now for the good news.

My energy level is better than it's been in years. And aside from my pesky MS symptoms I feel great. I attribute it all to freeing myself from the nasty interferons. My body hated those poisons. While I was taking them, I constantly felt sick. I always had a massive migraine which is mostly gone. I used to constantly feel sluggish, achy and just plain crappy. The interferons really affected my quality of life. Now to mention, it is so nice not to have to stick myself with a painful needle every other day. I don't have a constant worry about my meds. Being free from those horrible shots gives me a new lease on life. So all in all, already it has been worth it!

I hope to update this after our 1st check up and maybe each month, however I quickly losing the motivation to document things, I am more so motivated to move forward with my life and enjoy living.

I do wish Kristin would comment and contribute to these specific blogs because it's hard for me to speak for her. but she has a lot on her plates these days.

Thanks again for reading!

bromley · Family Elder Joined: Sep 11, 2004 Posts: 1838

Sugar,

Lyon · Posted: Fri Apr 11, 2008 12:12 pm Post subject:

Hi Ian,

There is a lot that isn't known and a lot of information which hasn't been released and I'm aware that the perfect terminology for me to use doesn't exist, but any idea what percentage of the time RRMS people experience an end of progression after Campath treatment? Rough guess?

I've gotten the idea that it's in the upper end of the scale, maybe well over 70% ? but for all I know they might have tweaked it to almost 100% ??

Bob
_________________
Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.

bromley · Family Elder Joined: Sep 11, 2004 Posts: 1838

Bob,

All that is really known at the moment is that Campath is excellent at reducing relapses and that most patients have seen stability or a reduction in their EDSS. These results are for those in the RRMS phase. Only time will tell how long the effectiveness of the treatment will last. I imagine that it is going to be most effective for those in the early RRMS phase (in terms of reducing disability). Only longer term data will show if it has a longer term effect.

The AAN conference which starts on Saturday includes a presentation by Dr Coles on more data / results from the Phase II Campath trial. I think the presentation is next Thursday. I will post what I see on Campath and other key treatments.

Ian

Lyon · Posted: Fri Apr 11, 2008 2:06 pm Post subject:

Jaded · Family Elder Joined: Jul 27, 2005 Posts: 151

That's fabulous news - thanks sugarmomma and bromley.

Your contributions are valued. Cool

J.

k6ristin

I posted day-by-day experiences with the Campath infusions (with pictures) on www.myspace.com/chilliwacklove in my blog there.

As Sugarmomma mentioned, I do continue to have a red itchy warm rash most days, starting in the morning. Sometimes it clears up on its own but I usually take an anti-histamine like xyzal or clarinex. At first I thought it was food related but time has shown it appears whether I've eaten or not & none of the usual-suspect variables seem to affect it (wheat, dairy).

I'm having a really rough time walking; worse than ever. I have neuropathic pain in my left eye alot. I'm slowly trying to take walks in the neighborhood & get moving anyway. I really didn't want to this evening; tired from a long day- but I did it anyway and actually made it a bit further than usual without a rest. But then, when that critical energy level was depleted, the legs shut down and no longer functioned, as usual.

I have caught 2 different types of Upper Respiratory type infections in 15 days; but I work in healthcare and have 2 children; so that's not really surprising! However, up until the Campath Infusion, I had avoided the cold and flu season completely.

On a positive note, I have a decrease in night-time spasticity and hand neuropathy.

I realize 3 weeks really isn't enough time to declare any real patterns or results, but it's hard not to take every little feeling and place meaning to it. The big picture is important, that I'll probably get better, but getting through the first 3 months is likely to be rough. We get our lab results back this week, to check platelets & thyroid function, among other things.

Phase 3 trials are recruiting throughout US/Canada. Hope this helps those thinking about joining!