one week after campath

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

one week after campath

Postby k6ristin » Wed Mar 25, 2009 2:13 pm

I went into the Neuro's office today, 'cause I just can't get my legs to work right. They're super duper spastic and the dropped foot is way worse. The team was supportive, they gave me some different drugs to try for the spasticity and some oral steroids to see that if that didn't help me feel better and get walking better sooner. Tomorrow I have to go back to work so I was nervous about getting around the office. He explained that I've got all kinds of cytokine reactions going on and that's what's causing my problems. He was very upbeat and positive that within 1-2 weeks things should calm down and I should feel better. No real explanation as to why sugarmomma and I are having such a rough go this year. My rash appeared on cue, to show off, it wasn't that bad, just a rosy red. Perhaps because I forgot to take the claritin, or because I was stressed about having to come back to the clinic, AGAIN. Anyways, I've had one week at home to do nothing but rest and tomorrow it's back to the office. Hopefully my legs will co-operate. Is rough going back, everyone will say "oh how are you and be expecting this miraculous thing", when in fact i'm way worse and it'll take some re-explaining....they have an excuse, but my family does not.
I don't care if they are old, they know how to google, and i wish they'd stop calling everyday to see if i'm all better yet and ask ridiculous questions when i've told them a million times it's experimental, nobody knows!!! they don't even really know what MS is. (why are you so tired?) is it so hard for the family to do a little research? i would for them....
sorry for the rant!
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Postby patientx » Wed Mar 25, 2009 5:50 pm

Kristen,

That sucks you're having such a rough go of it. Hope you feel better. Maybe this is the darkness before the dawn, so to speak.
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Postby rainer » Wed Mar 25, 2009 8:20 pm

Feeling like sh*t means its working!

8O
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Postby ssmme » Thu Mar 26, 2009 5:41 am

Focus on the positive things happening to your body right now. All b-cells and t-cells are gone. No attacks are occurring at this moment in time but you have been fed an intravenous poison so be patient and rest. When you get sick with fever and body aches does your ms come to the surface? If that's the case then your 'sick' right now and your body needs to recover prior to begin healing. We are close in time to our treatment weeks. Please do your best to stay healthy. Be armed with hand sanitizer and ear loop face masks. If you use a computer at work remember that they are very germy if shared with other people so use your hand sanitizer regularly and don't rub your eyes. Germs get into your body easily through all your facial mucous membranes. Don't share pens or pencils either. Carry your own around so you don't have to use anyone else's.

Did you easily get sick after your first treatment? I'm talking about colds and other easily shared germs.

Keep posting how your feeling. We can help give a broader understanding of this treatment and it's effects if we (all of us in the trial) put our info out here.

I know it's your second dose and only my first but I am really interested in hearing how your doing so I'll know what to expect in a year from now.

Take care,
Marcia
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2 weeks post campath

Postby k6ristin » Wed Apr 01, 2009 7:46 pm

Thanks, guys. I finished the pred-pack sunday and I am having some moments of balance and coordination and normalcy. I can walk around quite a bit and don't feel so wiped out. Still not walking well, however.
I realized I haven't had a single eye-ache in a long time. These are all still good signs!!!
I continue to wake with a rosy redness to my belly and arms. It only occasionally itches or feels hot.

I do feel a bit sniffly this evening. I'm focusing on hydration and vitamins and lots and lots of fresh fruit & veggie juice !!! I'm even taking colloidal silver.

This is just fabulous having several campath stories being chronicled right now!!!
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Re: one week after campath

Postby Grumpster » Thu Apr 09, 2009 5:48 pm

k6ristin wrote:I everyone will say "oh how are you and be expecting this miraculous thing", when in fact i'm way worse and it'll take some re-explaining....they have an excuse, but my family does not.
I don't care if they are old, they know how to google, and i wish they'd stop calling everyday to see if i'm all better yet and ask ridiculous questions when i've told them a million times it's experimental, nobody knows!!! they don't even really know what MS is. (why are you so tired?) is it so hard for the family to do a little research? i would for them....
!


Kristin I feel like I could have written that myself. Are you sure you did not plagerize that from my mind?

Sorry to hear your 2nd went like it did. I believe you know that my first went ok with the exception of crazy rash until day 4 when my ON got worse. By the Saturday after the trial my ON was so bad that I was basically blind in my right eye. I got some steroids after a week. They wanted to watch me and see if it went away on its own first. The steroids helped a lot and I have been slowly recovering day by day. I am ~1 month post treatment and my vision is not quite back to baseline yet, but close. They did call my experience a relapse, not just an AE from the drug. I think the combination of a ton of stress at home and work and the drug itself put me in a tail spin and a relapse.

Now I seem to be feeling better at times that my prior baseline. I have less vertigo / dizzyness and my gait is better at times too. Maybe a phsycosomatic type effect, but I'll take it. I pray to continue to improve. I do not know if I'll go for round 2 yet. We will see. My platelets are low, borderline I guess and white blood cells low too. I hope those get back up quick. I do not want some drug addict's platelets that he sold to a center...YUCK.

I actually walked in the San Diego MS walk last weekend / 3 miles and it went pretty well. I only had a little vertigo at the 1/2 way mark and it went away with a little rest and I walked on.

I hope you feel better soon. Too bad family can be so clueless. Is it pure ignorance, or denial, or a little of each> I dunno...

One day I am going to start my Campath blog to chronicle my journey, but for now this post is a good start.

God Bless - Grumpy
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