I've been on avonex since diagnosed in 2008, no real issues since initial numbness in my right leg. New numbness started in my left leg in June. Most recent MRI was apparently " worse" and my doc wants me to start rituximab. I've read up on it, and I feel its potential to kill you is not a risk I want to take right now since I just have slight numbness. Any one else experience this? Don't you think it's more reasonable to try a different, lower risk med first? I haven't had the blood work to… read more
Im curious what type of MS you have also. Right now I'm taking Rituxan every 6 mo at this point. I have Rheumatoid Arthritis too & PPMS. There's no drug at this point for PPMS but my neurologist likes the idea that just maybe we're helping 2 things with 1 drug. I don't think I'm at risk for Rituxan killing me. I don't think I'm given it often enough to justify that thought. Now if I was on it every week id be singing a different tune! But I do feel that MS can rob you (perhaps eventually for you) of working, family life (uninterrupted by MS), independence & a social life that will impact you for the rest of your life. So if you are uncertain or want to go a different route talk with neurologist. See where they're coming from & really really listen. Ultimately this is your body & you put into it what you feel comfortable with. But do something to slow the progression down. Because MS may become so much worse:( for you. It may not, everyone's progression is different. But that possibility is stronger than the Rituxan concern for me for sure.
Rituxan and the new medicine Ocrevus were each designed to attack the same things. If you have RRMS or SPMS this new drug gives you 50% likelihood (in RRMS) to slow or stop progression & 27% in SPMS. You will only have the 2-step IV process approximately every 4-6 months (depending on dr orders). You'll notice less relapses in RRMS & you'll never truly know of progression in PPMS. Good luck to you
You are nearly at your 10 yr anniversary, since dx. Normally where rrms transitions to the next stave, if its going to. Avonex is old school, there are newer meds that work better.
I have PPMS and had never had a true episode/attack but the progression was steady. Halloween weekend I did have one & it left me paralyzed for over 24 hours...scared the crap out of me. I had been taking Rituxan before this. It's my understanding that Rituxan is very comparable to the first & only drug for progressive forms of MS. Because of my recent episode my neurologist believes I may in the cross hairs of PPMS & PRMS. There isn't a cure for MS but if for some chance something (Rituxan) can slow the progression----it's your body your choice. Mayo Clinic recommended for me even though I will never know if it's truly helped but otherwise I get nothing. I guess I want to feel like I'm doing something.
I was diagnosed with RRMS 8 years ago, but I'm not sure if that's changing to SPMS at this point with the worsening in symptoms and continued MRI activity. It started with initial numbness to my right leg in which I couldn't feel temperatures correctly, no other issues. I went off my avonex twice for each of my pregnancies and then had an MRI done after my second child which showed most of my original " spots" gone and a few new ones ( without any apparent symptoms). That was 4 years ago. In June of this year my left leg had the same temp issues as my right did. Went to see my neuro and my neuro exam was still 100%, but she wanted to do another MRI. Well that showed continued activity and active flares. I still have the issue with temp in the left leg, but it has gotten better, but I occasionally get weird sensations and I'm terrified I won't be able to move it. This also causes horrible anxiety. This is why they want me to start the rituximab. It's scary. Today was a bad day for the sensations in my leg and now I feel like I should take it. I have 2 little kids and want to remain as functional as possible for them. I feel so hopeless right now