Another alemtuzamab labrat

ssmme · Post by **ssmme** » Fri Jan 23, 2009 8:50 am

I had my initial visit today for the CARE MS II trial and have officially met the criteria. I will know on Feb 23 whether I get alemtuzamab or rebif. Does anyone know why we have to have the tb test. I get my results read on Monday.

Marcia

Grumpster · Post by **Grumpster** » Fri Jan 23, 2009 9:00 am

It sounds like we are on similar paths. I will know within a few weeks too. Lab rats we are officially. I did not have a TB test, but they did do an HIV test..??!

mrhodes40 · Post by **mrhodes40** » Fri Jan 23, 2009 9:38 am

Yes, you have to be tested for any previous infections for two reasons;

one is that if you have TB and were unaware of it, then Campath, which is known to hamper immunity, will allow it free reign. All of these kinds of suppressive drugs, many of which type are already out for Rheumatoid, have a contraindication of pre-existing infection, meaning if they find one you can't have the drug.

Also, If you had HIV, it would be bad to take a suppressive drug like Campath; the problem with HIV is that it destroys immunity, so you'd be doubly impaired if you took Campath on top of it. People with HIV who develop AIDS (which means they progressed to a point where their immunity is now non functional) die of unusual infections like PML or Kaposi's sarcoma that people with normal immunity fight off on a daily basis.

Two is that they will be keeping stats on cases of new TB, because they know the other immunosuppressive drugs increase risk of contracting it.
They have to know ahead of time you did not have these things to start with so the stats at the end are meaningful.

I did read somewhere that there were finding fewer new infections with Campath than they had expected based the experience with other kinds of immunosuppressive drugs.

ssmme · Post by **ssmme** » Sat Jan 24, 2009 11:18 am

but they did do an HIV test..??!

They probably will check for HIV since they took 6 vials of blood and probably for other blood born infections but they didn't specifically tell me that.

Mrhodes40 - thanks for the info. I didn't think about TB being any worse than contracting a mean case of strep throat that could be antibiotic resistant but it's something they can check pre-treatment so I guess it's a good idea.

Marcia

Grumpster · Post by **Grumpster** » Sat Jan 24, 2009 4:09 pm

i just want this next 3 weeks to go by as fast as possible so I can get started. It has been a long road to get this far with it..

Marcia I will continue to post and we can keep a kind of lab rat blog going..

mrhodes40 · Post by **mrhodes40** » Sat Jan 24, 2009 4:27 pm

You're welcome!

Good luck to you all!

ssmme · Post by **ssmme** » Thu Feb 26, 2009 12:32 pm

I just got back home from my randomization visit. Alemtuzamab/Campath is my assigned treatment. I start treatment on Monday so things are starting to move very quickly for me. Anyone out there have any words of advice prior to infusion on Monday?

Marcia

Lyon · Post by **Lyon** » Thu Feb 26, 2009 12:59 pm

freiguy · Post by **freiguy** » Thu Feb 26, 2009 7:12 pm

Ask your doctor what he recommends but this was my regiment on infusion days. I took zyrtec, benadryl, and tylenol during the steroid drip. The tylenol every four hors helped with any aches you may encounter during the actual campath drip. The combo of zyrtec and benadryl was used to avoid any chance of the campath rash. Bring stuff to keep yourself busy since it's pretty boring just sitting around. Good luck and let us know how it urns out for you.

Fred

Grumpster · Post by **Grumpster** » Sat Feb 28, 2009 3:04 pm

I just finished up day 5 yesterday. Ugghh. I second the zyrtec / benadryl combo for the Campath rash. I got it bad, but it did abate when I took handfuls of those above mentioned. Have someone to help you get there and nack. After day 3 I was so wiped out. I still am totally spent, dizzy a bot too. Good luck. I'll post more when I have NRG to do so. It feels good to have the first week behind me.

freiguy · Post by **freiguy** » Sat Feb 28, 2009 7:12 pm

It's good to hear you are finished with the infusions. Take it easy the next week or so. Let us know how things are when you get a chance.

goatgirl · Post by **goatgirl** » Sun Mar 01, 2009 8:48 am

Hi guys. I just finished on Friday too. One thing to ask about is Acyclovir, it's an anti-viral. On Day 1 my neuro said there's been an amendment to the protocol and while it's not effective yet she was leaving it up to me if I wanted it. We both thought it would be beneficial and one of the study flackies ran out to a pharmacy to get it. I took it Bid over my infusion week and will continue for the following month.

Other than that, same sort of drugs as everyone else. Before I came in they had me take Zantac to deal with the steroids, Claritin, and Tylenol. Once there they gave me Benadryl before the steroid. Continual tylenol and lots of fluids worked well -have them use the big IV bag - but on Day 4 it wasn't enough for the headache so we added continual ibuprofen.

I must say I felt good most of the week, certainly the first 3 days, antsy from the steroids. But defiitely out of it, I didn't drive. Water tasted funny and I found slicing citrus and adding it in to my water bottle to be helpful. I did have an occasional headache, especially after Benadryl. We found pushing that slowly with lots of fluid helped.

Day four experienced mostly fatique, if I don't watch the clock for Tylenol and then get a bad headache I also get nauseated. Friday after I left I had @ 3" patch of hives on my forearm that lasted a couple hours. I also had occasional flushing off and on. Now I just feel like I'm coming off of having the flu, sorta drained and fuzzy brained!

Good luck! We'll be thinking of you.

Jana

freiguy · Post by **freiguy** » Sun Mar 01, 2009 12:40 pm

This is so god to hear all of your experiences. I will be going back for my second round in July. From what I am reading it sounds like the infusions have gone really well for everyone. You might feel drained, fuzzy brained, etc. right now but it will fade over time. Be careful when you are out and about...the flu is still hanging around.

Loobie · Post by **Loobie** » Sun Mar 01, 2009 5:11 pm

Grumpy,

I know you've been having a go of it for a while; you deserve something to freaking work. Here's to you man!! Good luck!

Grumpster · Post by **Grumpster** » Mon Mar 02, 2009 10:16 am

Thanks Loobie,

I am going to start a thread on the Campath forum to chronicle my treatment. I am having a bit of worsening right now, optic neuritis. Hopefully it will be brief and will get better as I recoup. That Campath stuff had my immune system in a frenzy which I believe is why I have this ON worsening right now. Hopefully it is those myelin attackers in their death throws!!!