This Is MS Multiple Sclerosis Community: Knowledge & Support

This forum has gotten very quiet lately. For those of you using Campath off-label or in one of the trials could you please report your condition?

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Marcia

hi maria, i got my second infusion in the end of april and i too am feeling pretty bad right now, if it wasnt for ampyra i dont know how i could function at work. my legs are so weak differently than pre ampyra muscle weakness versus the weakness from my ms. i am stable though no new symptoms vs in 07 i was having a relapse every 3 months. i was on copaxone for a year and a half and it seemed to slow my relapses had one in the following year. but as far as i can tell i have had no new symptoms since campath so i believe it is working. will post some more but my laptop is at 7 percent.

Hi!

I have nothing to compare Campath usage to. I'm in the branch for the newly diagnosed and had my second year infusion not too far back.

After the first infusion in February 2009 I felt not so great by the end of the week, but that only lasted a few days. Then I was sluggish for a few weeks, not more than a month. Little bit of fuzzy vision in my usual ONN eye days just after infusion, but not an official episode.

After a few months I started working out again. I felt like I was on speed with the amount of stuff I would get done in a day...like a normal person I suppose, but my energy level was so much higher that it was really noticeable. No longer was I ending my day saying things like "the floors will still be dirty tomorrow!" or addressing some other minor thing on my list of stuff to do that so often as a person with MS just doesn't get done. I'm on no meds. Zero. I have a standing order of pain meds and some narcolepsy drug for fatigue, but I didn't use them after Campath.

It was a really stressful and craptastic year. My Dad died in October. Money was crazy tight as my husband was finishing up grad school. We've got 2 kids, jr. high age...need I say more?! But get this - not one episode, the entire year!

In January I started feeling tired. Nothing in my life had changed but I was feeling like there weren't enough hours in the day to get everything done. Fuzzy brained, almost like a hangover type of feeling! Working out didn't give me an energy buzz, instead it sapped me for the rest of the day.

February rolls around and I had my second infusion. 3 days, nicer that time around. It was easier. Within 2 weeks I was feeling heaps more energetic than January, running again, but still feeling like I was coming off the flu. No vision issues with the infusion. In April I ran a half marathon. Super slow...and I walked...but hey, I got out there & did it!

Third week of May a portion of my foot was numb. I can still walk unaided. Heck, I still run...but I have to watch it cause as I get tired the outer portion that has the numbness droops a bit and it doesn't always leave the ground. Sorta slides and I might stumble or nearly fall.
When I went in for the monthly blood draw my gait looked great/normal, but I didn't do so hot on the poking pin test. So they called it an episode. If this is how MS is going to role with Campath - I'll gladly take it.

It's hot here in Tucson, AZ. If I overheat, cycling 50 + miles with my husband for the Bike MS gig, or run at a warmer time of day, vision gets a bit blurry but not everytime. Pre Campath it always did, sometimes just getting the mail during the heat of the day my eye would be shot for a few hours. If I have to work out to get symptoms - I'll take it!

I'm sorry I haven't updated. I'm only on now because my younger sister just got diagnosed and I was looking into something she said about my aunt with MS. Thought I'd check in with the Campath Crew!

Hope everyone does well!
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I was kind of rambling there, sorry.

In case I wasn't clear I've been in the trial for 15 1/2 months or so. In all that time I've had one very minor episode. In fact I wasn't entirely certain it was one until they poked me with a pin and declared it so.

The Year prior to that I had an episode every 3 -4 months that lasted 3 weeks to a few months. Optic Nerve Neuritis, muscle spasms in leg, shooting nerve pain in back.

I give Campath 2 thumbs up. Have felt great, haven't had any sickness/illness, even when my entire household had swine flu last fall I was rockin'. I'm on no meds, life is good!

Thanks for posting you guys. It looks good so far I hope more people report soon.
Marcia

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Marcia

short up date...feeling not so great right now...had an exacerbation...yucky...due for second round of Campath in August..almost feel it wearing off...best result so far is a "less prominate" lesion on spine than before Campath (i can stand longer now)...before couldn't really stand much at all...well so far i have remained just about the same which is good...nervous about round 2...round one was hard energy wise wiped me out for month's on end...now had relapse (believe due to ampyra)...which by the way has been good for the spasticity as well as bladder and some energy depend's on the day...need to quit smoking which is my poison..have tried it all to stop and think it makes me worse(stupid me right?)...well to avoid stress is impossible with a teenager and life happening...so will try to quit AGAIN! love Campath and need second round (hey if it is holding me here, at this point I will walk with my cane and continue to pray to be able to walk without it one day, I AM GREATFUL FOR BEING ABLE TO DO SO--AS MOST OF US CANNOT)

hope this help's someone...somewhere...

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GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

Am on a TON of meds, but they are for HBP, neuropathic pain (cymbalta), and vits B and D.
Now I also take provigil, because I work long hours and was falling asleep at the wheel. Hated to add this, but preferable to hugging a tree at 50 miles an hour, or harming someone else.
Definately feel the effects of MS, but hey, still in the game, no new lesions, and no more crummy shots every night.
So glad I got on this trial. It's probably the best thing that's happened to me since I got MS.

had second round of Campath the 23rd, 24th and 25th of August. To my suprise my body took to it wonderfully this round. The 25th got the "rash"...no biggie...benedyrl took care of that (only lasted about 2 day's). Now it is the 30th and I am VERY tired. cannot do much but must realize that i JUST got a chemo-drug (campath) so this too shall pass. I still walk with a cane although the first 2 day's of infusion did not really need it, but used it as a pre-caution. Today the foot drag is awful and used up all of the lil energy i did have. provigil does NOT work for me because it makes my body shake horribly...so for now i will rest...cannot wait for the result's as last time i was able to stand longer. It is almost like it wore off in the 9th month...still it has been good to me thus far! hope this help's and may GOD BLESS all of us!

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GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

I think i d share my 2 cents here. I ve had a huge regime of campath (a total of 235 mgs over a 3 month period) directly after dx in late 2008. That s when i had my first and only relapse (so far).
I am sorry to say that it didn't help a bit. While i had no relapses ever since, my overall condition deteriorated rapidly. First time i noticed some improvement (not dramatic but still...) it was after my "liberation" treatment.

I really think that campath may help some of us, but certainly not all of us. I posted this only because we must never cease to search for other treatment options.

I am currently in contact with a chiropractor just in case my upper cervical spine needs adjustment.

Anyway, Campath is very toxic and dangerous and i will never do something like that to myself ever again whatsoever. It helps with inflammation that causes plaques and all but it does nothing to address the underlying factor which triggers MS and may be different for each and everyone of us.