Daclizumab

[christi136]

Hi,

I was wondering if anyone here is taking part in the study at NIH for daclizumab? I have an appt next month and am considering it....

[Thor/MS]

Daclizumab

I have been on the this NIH study for 6 months. I was formally on the earlier version of Daclizumab since 2007.
Highly successfull.
I also live up the street from you in Damascus

[christi136]

Wow you are really close! I'm kind of excited about the trial and I hope I can qualify for it. I'm glad to hear you are having good results...I'll keep you posted if I get accepted!

[msdad]

Daclizumab

Yeah, it really works. Just had my 1yr sq shot the other day. Also been in a MRI study, and very clear results.

If you qualify for the DAC study, you should really consider it.

[christi136]

I just went in yesterday and found out I have to do the lumbar puncture and this treatment where they filter your blood. Have you both done this? How long does each take and is it painful?? I'm a little scared...

[msdad]

Lumbar Puncture

Hi Christi,

The LP sounds so much scarier than it really is. Most people with MS have had to have it done at some point since it is part of the diagnosis (although I always skipped it). For the study at NIH, it is required. Don't know if you met Joan yesterday, but she does them all and she is great. I am having my 1yr LP done next month.

They'll also want a skin biopsy. It's a 3mm punch biopsy and very quick. They use a local anesthetic for both. I don't even have a scar from mine.

Also, the apheresis (blood filtering) is no big deal. The only issue is that it takes up to 2 hours and you can't get up to use the bathroom. The machine only takes a very small amount of white blood cells from you. They do have a large and current DVD library and will put on whatever movie you want to see.

I was shocked and a little scared when I heard about all the different things they wanted to do. It's a lot of information to take in all at once. For me, none of it compares to the awful side effects of Rebib, the risks and fear of PML from Tysabri, and the nightmare of MS relapses and steadily declining health. This drug is the best thing that I've had in the decade (almost) that I've had MS.

Did they say you qualify? Did they give you an MRI yet?

[christi136]

Thanks for the info. I was really excited but then when I got home and read all about the LP and the blood filtering I got a little freaked out.

I met Joan, she seems really nice. I also liked all of the nurses there. The Dr told me she doesn't see why I wouldn't qualify based on my records, but she has to present my case to a group of doctors Monday, so I should find out soon after that.

I only did a brain MRI, but she said it is for another study and would count towards this one if I join. I'm almost 100% sure I would join given the opportunity, but I'm just anxious about all the procedures. Maybe they can give me Valium or something! lol

[msdad]

I did the same thing - I took 10mg Valium (2 5mg pills) about 2 hours before my last LP. They WILL NOT give it to you at NIH. I just happened to have some extra lying around. Ask your own doc to prescribe it for you.

Hope the study works for you. We'll probably run into each other at some point. They seem to have everyone show up on Thursdays. I was scheduled for an MRI yesterday, but asked them to move it to this morning.

Hope you get in. They have their group meeting on Mondays so they'll probably discuss you then. Let me know.

[Thor/MS]

Hi Christi,

It is a little intimidating at first.
I have had 3 LP's in the past, but it has been quite a few years ago. I did get the headaches afterward, but I survived.

I have had the apheresis (blood filtering) a couple of times. It is not too bad, it just lasts a couple of hours. they have loads of movies to watch to kill the time. I just hate the tape on my arms. I am little bit hairy there

I have been a patient at NIH for close to 20 years. They consider me a poster child for Dac. I have no activity when treated with Dac.
You could not ask for better care than you get with NIH. Joan, Helen and the rest of the nurses are great. Helen is from Damascus as well. Our kids went to school together.

Hope you get in and don't hesitate to ask if you have any questions.