Alemtuzumab trial

[Cherrymom]

Hey all- anyone here doing this? I did my 5 day infusion a couple weeks ago. Had some infusion reactions but feel good now. I have a cold (could be my weakened immune system or the fact everyone is sick around me). Anyone else?

[Thinkimjob]

If this is the same as Campath, I'll be doing it next year. Let us know how it goes.

[babyduckling]

Hey all- anyone here doing this? I did my 5 day infusion a couple weeks ago. Had some infusion reactions but feel good now. I have a cold (could be my weakened immune system or the fact everyone is sick around me). Anyone else?

I haven't heard of this at all give us some information please

[spacedive]

Campath

Campath has a few different names now. It's been 3+ years now since my second application. It has worked extreamly well. All of my lesions in my brain and neck have gone non-active since the first application. I make sure I get sun and take Vit-D, drink water and stay active. I was going down for the count and now I stand up with my arms toward the sky and say I'm alive!
-spacedive

[Cherrymom]

Campath

Yes it's the same. I have met several people here that are in the trial but a year ahead of me and are very happy with the results. I'm doing good so far. Just go Monday for my first follow up and blood work. I ended up on antibiotics and after being off for three days I'm sick again. Not unexpected, it takes about 12 weeks (or so I've been told) to rebuild your immune system. I have 6 kids so too many germs....

[spacedive]

Campath MabCampath Alemtuzumab Lemtrada (newest name)

Campath MabCampath Alemtuzumab Lemtrada (newest name).

Sorry to hear you're sick, hope you get well. I've done a blood test once a month for years since on the trial. Everything has been good so far. Once 2 years go by I think that's when the fewest have passed away. It's a new life for me not having to do Rebif 3x a week.

I wonder what caused my immune cells to stop attacking me? I know it was the campath, but/how does this work?

[JerryD]

spacedive,
It sounds like Campath etc. has been good to you. What is your dose of vitamin D ? What type of MS are you dx'd with? What is the blood testing looking for ?

[bree2013]

Cherrymom -- Wow, this sounds promising. As Jerry asked, what type of MS are you dx'd with?

You did a 5-day infusion couple of weeks ago... was that your first? How far are the treatments set apart? Every few months?

If I read correctly you were dx'd in 2009 -- did you Dr. mention the trial to you or did you pursue it?

All the best to you and good luck. You may be onto something that will pave the way for others.

Bree

[spacedive]

Campath

I take an over the counter VitD at 1000iu. I didn't want to take too much. I take one about 5 days out of the week and I go outside to get sun on my arms, face, neck when I can. 15min when the sun comes out. I work full time so when the sun comes and I can, I go for it. I live near St. Louis.

The campath is given once a year for two years. First time 5 day infusion and second year for 3 days. It's not fun, but its worth it for me. I have 100+ lesions in my head/neck and all have gone non-active as far as MRI's can see because of the campath (worked instant for me).

My MS diag began in 2005. My friend JV educated me about the immune system and then it made sense to me that this medicine had merrit. My MS doc then set me up with the CareMS trial.

Any questions anytime are welcome, I want to help people with MS.

[Cherrymom]

Been away

Hey it's been just over two months. I have had an upper resp infection that took two rounds of antibiotics to clear but feeling great now.
I had my first 5 day infusion, will go again in one year. Way too early to tell but I have relapsing rem and it was my neuro that suggested it after trying Rebif and an oral drug trial. To me it was my last drug, def still up to doing diet, exercise extra - will continue to do that but if this doesn't work I'm done. No more drugs for me. Love the no needles and I feel really good so far.
One of the 'selling' features to me was the unofficial track record that in our hospital anyway that it seems to have in helping with neuropathic pain.
So time will tell but I'm glad I tried it.

[JerryD]

So, Cherry,
In have heard of this CAMPATH before, but what is it really?
Is it just one infusion of drugs once a year? Does it stop the disease progression? How does the neurologist know if your disease has stopped progressing? Does the treatment last forever without doing the treatment a second and third time? Does this treatment have any restorative action? Do you think you are going to regain any of the function that you have lost due to the MS? Please reply

[Marco]

Earlier I had created a post about lemtrada that has a summary of the medication.


http://www.msworld.org/forum/showthr...light=lemtrada

[JerryD]

Thanks Marco. Your info on Campath is really appreciated.

[Cherrymom]

Future

Thanks Marco - I actually had read your post (and other research) before I decided to try- last year.

For me I consider myself a realist. I don't know (or even know if I believe) all the research. Something's that helped me make up my mind was my six kids. I was ready to just say 'whatever' and take what comes but I have little people that depend on me and 'if' I can do something to 'slow' 'reverse' some of this horrible disease than I was willing to give it one more try.

The studies showed promise (like they all do in their own way), I've met four other patients (randomly at the clinic) that say that it's been very positive and I decided for me the risks were worth the possible side effects, so went for it.

On a negative side I'm not looking forward to another dosage in ten months- I had hives, elevated heart rate, some fever etc. but fortunately only for a week or so.

[JerryD]

So cherry,
What does your post mean ? Did you get the Campath infusion ? If so, tell us about it ? where did you do it ? what did you have to say to whom to start it ? I am curious about your situation and journey ?