DetoxRN
New member
- Joined
- Aug 8, 2019
- Messages
- 2
- Reason
- CALS
- Diagnosis
- 03/2019
- Country
- US
- State
- NJ
- City
- South Brunswick
Hopefully I’m posting this is the correct area. My mother was recently diagnosed with Bulbar ALS, we’ve been going to the ALS Center at Penn Med in Philadelphia. I have a thousand questions, but the one that prompted me to post is one about Radicava.
We started infusions a little over three weeks ago. There were no apparent adverse reactions initially, until about four days after her first course had finished her legs gave out and she fell. Her symptoms up until this point had been speech difficulties and right arm weakness, she never indicated that she had any weakness in her legs. Well, my dad call me yesterday and told me she fell again while gardening. I know one of the side effects of Radicava can be gait disturbances/weakness in the legs. I had my father call the MD and tell them my concerns and they said it wasn’t the Radicava just the progression of the disease. I’m sure I fully accept that because I don’t believe in coincidences.
Does anyone have any insight from experience with Radicava whether this common? Are the nurses at the doctors office right and it’s just the disease progressing? I know that there is no way of knowing for sure, but the more information we have the better decisions we can make. Thank you so much for your help and support.
We started infusions a little over three weeks ago. There were no apparent adverse reactions initially, until about four days after her first course had finished her legs gave out and she fell. Her symptoms up until this point had been speech difficulties and right arm weakness, she never indicated that she had any weakness in her legs. Well, my dad call me yesterday and told me she fell again while gardening. I know one of the side effects of Radicava can be gait disturbances/weakness in the legs. I had my father call the MD and tell them my concerns and they said it wasn’t the Radicava just the progression of the disease. I’m sure I fully accept that because I don’t believe in coincidences.
Does anyone have any insight from experience with Radicava whether this common? Are the nurses at the doctors office right and it’s just the disease progressing? I know that there is no way of knowing for sure, but the more information we have the better decisions we can make. Thank you so much for your help and support.