Purpose:Participate in clinical trial(Started Mar 03, 2007)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
May 17, 2010
1 other
Monthly
Major
Mild
Always
Somewhat
Apr 13, 2010
1 other
Monthly
Major
Mild
Always
Very
Feb 16, 2010
1 other
Monthly
Major
None
Always
Not at all
Side effects:
Rash or skin problems
Date
May 17, 2010
Advice & Tips
I get MRI's every month as part of the NIH study of this drug. Once again, my April MRI showed no new lesions.
Cost
< $25 monthly
Date
Apr 13, 2010
Advice & Tips
As stated in my bio, I fly to the NIH once a month for an infusion of this drug. I receive monthly MRIs, and I hope to be getting monthly copies of the results of the MRIs and other tests to share with you. So far, there have been no new lesions popping up on my MRIs since I began taking this drug.
I have been able to maintain a fairly active lifestyle. I swim 30 minutes a day, three days a week. I walk my dog at least once a day. I lift weights three days a week. I do yoga once a week. I have intermittent pain and fatigue and struggle with bladder issues; the damage from prior MS attacks has not evaporated. I am just grateful to have no new symptoms to have to cope with.
I have had a pesky and persistent skin rash since starting this drug. I am unsure whether Daclizumab is to blame, or a hyperactive thyroid.
Cost
< $25 monthly
Date
Feb 16, 2010
Advice & Tips
I really hope this drug makes it onto the market. I turned to Daclizumab as an off-label treatment for MS three years ago, and as far as I know have experienced no subsequent MS attacks and no further brain lesions. Production of Daclizumab was halted in the US in September. Another pharma company is considering producing this drug in a slightly form, with a different delivery system (mine was IV.)
The NIH flew me to Baltimore to screen me as a potential participant in a study of a new formulary of this drug. They also gave me what may be my last infusion if I am not included in the study. I haven't heard back from the NIH yet. Daclizumab infusions shield me from enduring the worst of my MS symptoms for about 3 weeks. Which only goes to show the drug really works.
If I can't continue on the NIH study, I'm not sure what medication I'll turn to. I've already tried Avonex, and experienced bad side effects, as well as a progression of my MS, and Copaxone, which caused no side effects but did not prevent the occurrence of new lesions. People with MS need more treatment options, while we wait for a cure.
For those of you out there with MS, I can attest from first hand experience that Daclizumab is safe, effective drug. The sooner it's available, the better for all of us.
Purpose:MS (Multiple Sclerosis)(Started Feb 06, 2008)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Feb 12, 2010
5 mg
Monthly
?Can't tell
None
Never
Not at all
Jan 12, 2010
5 mg
Monthly
Major
None
Always
A little
Date
Feb 12, 2010
Advice & Tips
i broke out in a rash 48 hours later and i had a very itchy rash for 8 weeks on my belly, arms, chest and back. i got an antibody blood test 10 weeks later and i am allergic to tysabri.
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