edjohnson
Active member
- Joined
- Nov 18, 2011
- Messages
- 48
- Reason
- PALS
- Diagnosis
- 10/2011
- Country
- US
- State
- nc
- City
- emerald isle
From Dr. Fiala
> There are now 3 patients getting Actemra infusions. I appreciate you letting know other patients you may know from the web about the study.
>
> Please see the encouraging progress of another patient on Actemra infusion for 5 months
>
>
>
> Milan Fiala,M.D.
>
> Recently, the first ALS patient on Actemra has been treated by monthly infusions with Actemra for 5 months and has achieved clinical stabilization.
>
> The time-course of ALS in the first patient on Actemra infusion therapy. ,
>
> first infusion = 4/30/12 at 4 mg/kg; 2nd= 5/23/12 at 6 mg/kg; 3rd=6/14/12 at 8 mg/kg, 4th= 8/1/12 at 8 mg/kg, 5th= 8/26/12 at 8 mg/kg; and 6th= 9/24/12 at 8 mg/kg
>
> FRS scores: January 2012 score 40/50; May 2012 score 27/50; Sept 2012 score 26/50.
>
> Discussion: This ALS patient progressed rapidly from January to April 2012 (FRS dropped from 40 to 27) but, after receiving 6 infusions, his FRS score has been stable (minimal drop from 27 to 26) for 5 months and patient’s swallowing problems have resolved.
> There are now 3 patients getting Actemra infusions. I appreciate you letting know other patients you may know from the web about the study.
>
> Please see the encouraging progress of another patient on Actemra infusion for 5 months
>
>
>
> Milan Fiala,M.D.
>
> Recently, the first ALS patient on Actemra has been treated by monthly infusions with Actemra for 5 months and has achieved clinical stabilization.
>
> The time-course of ALS in the first patient on Actemra infusion therapy. ,
>
> first infusion = 4/30/12 at 4 mg/kg; 2nd= 5/23/12 at 6 mg/kg; 3rd=6/14/12 at 8 mg/kg, 4th= 8/1/12 at 8 mg/kg, 5th= 8/26/12 at 8 mg/kg; and 6th= 9/24/12 at 8 mg/kg
>
> FRS scores: January 2012 score 40/50; May 2012 score 27/50; Sept 2012 score 26/50.
>
> Discussion: This ALS patient progressed rapidly from January to April 2012 (FRS dropped from 40 to 27) but, after receiving 6 infusions, his FRS score has been stable (minimal drop from 27 to 26) for 5 months and patient’s swallowing problems have resolved.
