Round 3, 9&10

and just like that, we’re done with round 3. Round 4 starts 12.29.17.

ALSFRS-R Scores:

12.10.17: 34

11.16.17: 35

10.19.17: 34

according to Radicava.com :

ALS Functional Rating Scale–Revised (ALSFRS-R)

The ALSFRS-R consists of 12 questions that evaluate 4 domains (fine motor, gross motor, bulbar, and respiratory function) in patients with ALS.1

  • Items: speech, salivation, swallowing, handwriting, cutting food, dressing/hygiene, turning in bed, walking, climbing stairs, dyspnea, orthopnea, and respiratory insufficiency
  • Each item is scored from 0 to 4
  • Higher scores represent greater functional ability

Timeliness is essential

Because ALS can progress rapidly, beginning treatment can be important in slowing decline in the loss of physical function. It may be important to let patients know that1:

  • Radicava® is an ongoing treatment for ALS
  • It is not a cure
  • It does not restore function
  • It can only help if treatment is continued as directed, even though they may feel like it is not making a difference
  • Individual results may vary

How long do patients stay on Radicava®?

  • The duration of treatment with Radicava® should be based on the professional judgment of the healthcare provider in consultation with patients and caregivers. Work with patients to decide how long to continue treatment with Radicava®.

Can patients receive Radicava® if they are pregnant?

  • There are no adequate data on the developmental risk associated with the use of Radicava® in pregnant women. Based on animal data, Radicava® may cause fetal harm. Advise patients to notify the appropriate healthcare provider if they become pregnant or intend to become pregnant during treatment with Radicava®.1

obviously Kenneth and I have some decisions to make if we’re going to get us one of these sweet additions one day, but until then we are enjoying being Uncle Kenneth and Aunt Sunny.

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