SMA News Today Forums | joane | Activity https://smanewstoday.com/forums/members/joane/activity/ Activity feed for joane. Sat, 25 Apr 2026 13:40:50 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 392cf16813f9e56f353a9cdab9c4e3dd joane replied to the discussion No Change is a Good Thing in the forum Treatment Questions and Stories https://smanewstoday.com/forums/forums/topic/no-change-is-a-good-thing/#post-28665 Sun, 05 Dec 2021 15:24:53 -0600 Reply to No Change is a Good Thing

Thank you DeAnn…  I will definitely let you know what I decide..  I have a virtual appointment with my neurologist the first week of January..

Joan

Stockton NJ

 

]]> ba9122716059dbc99169bb952e9c7e89 joane replied to the discussion No Change is a Good Thing in the forum Treatment Questions and Stories https://smanewstoday.com/forums/forums/topic/no-change-is-a-good-thing/#post-28656 Thu, 02 Dec 2021 19:38:57 -0600 Reply to No Change is a Good Thing

Good afternoon every one,  I had been on spinraza for a couple of years and felt good and even a little stronger!  I then switched to evrysdi since it sounded great, so easy compared to the spinraza procedure….I now feel much weaker and may go back on spinraza, not sure and very confusing.  I also wonder if I went back to spinraza if I would… Read more

]]> 16b0a06f91609677834b6be4341a9896 joane replied to the discussion Stomach Issues on Evrysdi in the forum Adults ​With​ ​SMA https://smanewstoday.com/forums/forums/topic/stomach-issues-on-evrysdi/#post-26017 Fri, 12 Feb 2021 17:50:32 -0600 Reply to Stomach Issues on Evrysdi

Good afternoon everyone. I have just started to have diarrhea problems and noticeable weakness in my arms.I was on spinraza for about 4 years and I wish I had stayed on it even though it is a pain to get to the hospital,whole procedure during the day but was grateful for it I went on Evrysdi the beginning of November and just started to have… Read more

]]> 25e8205e9f82e9362c7c70b10012dbd0 joane became a registered member https://smanewstoday.com/forums/activity/p/12424/ Wed, 10 Feb 2021 21:52:42 -0600 0