Experimental drug for MS "Daclizumab"

by April
(Tennessee)

I See an MS Specialist & he told me about this new "experimental" drug for MS. He says I'm a perfect candidate for the study. Can anyone give me any advice or personal experience regarding this drug?

I'm scared & don't know what to do.

There are, of course, some pretty severe risks but if it does as they think it will, then it will be a wonderful break through.

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Nov 10, 2011
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by: Akrista

Hi April,
After reading about the drug, Daclizumab for multiple sclerosis, it sounds like a promising treatment for MSers. As your doctor probably explained to you, it is given subcutaneously along with the interferon beta injection. It's actually added to the medication syringe so that you are taking both at once.

Here's a little about the drug for those who don't know what it is.

How it works is the drug helps increase the number of natural killer cells that help regulate the immune system, as well as reduce MS lesions. A previous study showed that "daclizumab 2mg/kg administered subcutaneously every two weeks in combination with IFNβ (interferon beta) reduced the number of new or enlarged gadolinium contrast-enhancing lesions (Gd-CELs) by 72 percent versus IFNβ therapy alone".

These previous studies caused researchers to want to develop more trials for the drug. Later trials have it being administered once a month.

As you said, there are risks involved. Higher risk of infections for one. Also, in one trial there were two deaths - "one death in SELECT (the name of the trial) due to a complication of a psoas muscle abscess in a patient recovering from a serious skin adverse event and one in the ongoing dose blinded extension study (SELECTION) due to possible autoimmune hepatitis".

So there are risks, which there are in most studies and/or trials, and in the medications that are developed as a result of them. It just depends on how much of a risk taker you are, I suppose. If you are willing to try something to get better - if it means enough to you to advance research to the point of a possible cure, then go for it.

Hopefully you will only have one of the milder side-effects and nothing too serious. Ultimately you have the choice. Cir has been offered the opportunity to participate in trials as well. A couple of times he considered it, and a few times he looked at the data and outright said no because he didn't feel comfortable taking the risks.

You don't have to feel obligated to participate. Only if you feel comfortable and feel that it will help in the end - help you and others with MS.

Hope this helps,

Akrista
Mar 14, 2012
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by: Anonymous

I have taken daclizumab - for about a year and a half until the manufacturer removed it from the market to "study" it for MS.

It is an INCREDIBLE drug. I am furious that Biogen would not make an exception to allow me to use it on a compassionate basis. I am too old for the study....

Definitely sign up. The data is impressive as were my results.

I have taken various drugs since getting MS 13 years ago. The interferons and copaxone didn't work. Novantrone was GREAT, but has a lifetime limit which I used up. I took Tysabri. It worked pretty well for a year. I gave up at 18 months.

I had the CCSVI - no help.

Zenepax (daclizumab) was next. It worked well - NO side effects whatsoever. Improvement was steady and only stopped because I was forced to stop the drug due to Biogen. I would go back on it in a split second.

I am now on rituxan and frankly, waiting for the daclizumab to be available.

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