Patients Multiple sclerosis
Posted on 10/9/20 6:47 PM
@maryanna I've been on Occrevus for 2 years and not sure it's working for me. I have another infusion scheduled for the beginning of December and this might be my last one but not sure what to try next....? Anyone have any suggestions? My walking has not improved - I felt better when I was on Gilenya.
Posted on 10/9/20 8:56 PM
I took Bioton but with no results. I actually had to purchase Hair Infinity and it worked. I did find out that low vitamin D can also cause hair loss. I take a very high dosage and its common in people with MS to have love vitamin D. I had to get a short hair cut and now have a 2 week nail maintenance bill now.
Posted on 10/15/20 1:13 AM
Hi. I just found out aubagio doesn't look like in over 2yrs has helped. Short story neurologist sending info about this med. Anyone able to tell the good or bad of they're experience.
Posted on 10/15/20 4:08 PM
@Pelaton Are you RRMS? I have been on Ocrevus since it was FDA approved and also take 2 Ampyra tablets, daily. This medication helps protected the myolen on the nerves in the legs.
Posted on 10/15/20 4:21 PM
@dan.varady Yes, I am RRMS and did try the Ampyra a while ago but it did not agree with me - too many side effects. So I have just stayed on the Occrevus but my walking is not getting any better and I am not confident that the Occrevus is working at all. Will try the scheduled Dec dose and then rethink my medications and talk to my neurologist.
Posted on 10/15/20 4:23 PM
@Pelaton Have you tried Tysabri?
Posted on 10/18/20 10:20 PM
@dan.varady No I have not tried Tysabri. I get worried about changing my medications too frequently but do you know anything about this medication? I can ask my doctor about it.
Posted on 10/18/20 10:23 PM
I would go with Ocrevus, having the two I feel the time between infusions (6 months). Is better for a patient than the four weed between infusions.
Posted on 10/29/20 4:42 AM
@dan.varady Hi I've been on aubagio since last October and my white blood cell count has dropped drastically. My neurologist actually just cut my dose from 14 to 7 in the hopes that my white cells will come up. So far I guess the drug is holding me. I guess ill find out after the MRi that was ordered to make sure no disease activity is occurring. Good luck with this drug. I would recommend doing bloodwork to check your blood. A CBC with differential is what would show levels of all your different blood cells.
Posted on 10/29/20 4:45 AM
Is anyone JC positive and worried about PML? Im having a hard time choosing a new medication if it turns out I have to off of Aubagio because its affecting wy white count. Im trying to find a drug that I don't have to worry too much about PML with.