Hi, I’m new to here and looking for some support. My mum has had MS for 40 years. She was relapse remitting but now has Secondary Progressive MS. She saw her Consultant on Tuesday who told her he was stopping her rebif beta interferon injections, she had been using for 18 years as she hasn’t had a major relapse. My mum tends to play down her symptoms and has experienced a relapse in symptoms. A definition of a ‘relapse’ would also help us. We feel very frustrated as these injections have helped to slow down some of the symptoms of MS. What makes us very concerned is that he said in her previous review in 2018 he wouldn’t stop them as another patient had experienced an irreversible relapse, which obviously makes us worried. He didn’t give an explanation or offer any other medication. As far as I understand, NICE guidelines recommend long term rebif or other beta interferon injection? Any help or experience appreciated. Thank you x
Hi, I was on Rebif from 2001 to 2016 I had SPMS with relapses. It was after the relapses stopped that the Neuro said the Rebif would no longer be percribbed. I feel a bit hard done by because I could still walk with 2 sticks around 50-80 metres. I think the MS did progress more rapidly since I stopped. Now I have to use a wheelchair. if its more than 20 meters. A relapse can defined by any symptom which has come back or a new one which you have not had before. Even if it lasts for only a day its still a Relapse. There are no Meds for SPMS so not much to look forward to. If I could turn the clock back I would fight to stay on the Rebif. Good luck to you. kielyn x
Hi all, I am new to this forum and would love any thoughts and experiences with stopping Rebif. I have been on Rebif for 8 years now, and planning to stop soon - injections are too much. Last year I learned about Dr. Terry Wahl’s Protocol Diet from her TED talk, which enabled her to recover from major MS problems (legs, back…etc.). I have been doing her diet for 8 months now, and planning to stop Rebif when I reach the 1 year mark on her diet. I feel great.
Questions: Has anyone had experience with Dr. Terry Wahl’s diet? (Her TED talk on her MS Recovery is at https://www.youtube.com/watch?v=KLjgBLwH3Wc )
What are any experiences on stopping Rebif?
Thanks for any info and recommendations !!!