6 months after Campath

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

6 months after Campath

Postby k6ristin » Wed Sep 24, 2008 7:23 pm

Today was me & Jessica's 6 month check up. I scored 100% on the PASAT math test, and my vision is still awesome at 20/20 & 20/15.
This is the same as before Campath.
For the other neuro/reflexes, walking, and balance tests, I also scored about the same as before, my EDSS is 2.5
My left side is definately weaker as it always has been.

The EDSS might end up a little higher because I told the truth about a bladder issue (was in denial) and recently developed a new sympton: l'hermitte's.

Despite this annoying L'hermitte's, I'll have to admit I'm probably not any worse. It's been nice not having to take any other MS meds (besides a ton of vitamins!)

Side effects from Campath continue to be frequent respiratory problems--Right now I have a nasty cough that has been lingering for 1 month. It did not respond to 1 round of antibiotics. It might be viral. about 3 weeks prior I sought treatment for a sore throat and every month before that was some kind of cold and even pneumonia.

I just re-did the Immunocap (IgE blood-allergy) Test. I've never had allergies, did this test 3 months before Campath and it was all negative.
(I work in healthcare and have easy access to lab-tests. I'm conducting my own research!) It will be interesting to see if I have any new allergies post-Campath.

It seems I have had some sort of cold since @ one month post-infusion.

My platelets never dropped (campath has risk of ITP) Jessica's got on the low side month 5 but was not critical (@180 i believe)
My lymphocyte count went from 0 (day 4 of infusion i think) and steadily & slowly rose month to month, where at month 5 i was back to "normal" (low but in range) at 16. Jessica's lymphocytes were normal (low) at month 4.

I've been a little discouraged that my walking isn't any better; Deep inside I know I need to get more exercise via Yoga & Bike Riding to regain strength. I'm also looking hard into my diet and know I ought to try harder there....So there's hope! When asked by my NursePractioner if I was going to accept the second treatment, I couldn't promise anything but I'm not dropping out yet! She is awesome and has been very supportive.

I still say stem cells should follow this treatment. Some of the studies out now state disqualification if the patient has tried prior "immune system ablation" I assume campath is in this category. That's my main concern and advice to think about before joining.

Still, No regrets! Thanks for listening....
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Postby patientx » Thu Sep 25, 2008 4:23 am

Thanks for the update. Please continue to keep us posted.
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Postby shardinay » Thu Sep 25, 2008 9:10 pm

Thank you so much for posting your update! it's good for me to hear since I'm still considering doing the research... if I get the Campath. I hope I don't get Rebif... I've already been on it and it didn't do much.

Please keep us posted!

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Postby queenie » Sun Jul 05, 2009 7:41 am

Shardenay: I too did not want rebif, and told the study nurse I would drop out if i was randomized to it.
I was lucky,lucky, lucky, and got the campath at the end of April.
Kris8ten, thanks for the info. I'm watching closely, to see how others do post infusions. I never had any infections/illnesses so far - which makes me wonder if it "took."
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