Patients Multiple sclerosis
Topic of the discussion
Posted on 2/12/18 4:29 AM
I am currently taking Beta interferons and participating in physical therapy 3x a week. I also try to get sufficient rest each day and eat organic to help my body recover.
However, I learned of the new drug Ocrevus, which was just recently approved by the FDA. Has anyone tried it? An recommendations.
According to the Mayo Clinic, it says it treats both the relapse-remitting and primary progressive forms of MS. Clinical trials showed it reduced relapse rate in relapsing disease and slowed worsening of disability in both forms of the disease.
Beginning of the discussion - 2/14/18Have you tried Ocrelizumab (Ocrevus)? https://www.carenity.us/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/anyone-have-experience-with-new-drug-ocrevus-57
Posted on 2/14/18 3:51 AM
Following! I would love to hear some feedback on this.
Posted on 2/21/18 3:44 AM
Following! I heard about this drug and am interested in taking it. Hopefully someone will come here soon with a review.
Posted on 5/30/20 6:22 PM
I'm currently on Ocrevus and my disease has not been a bit active since I started it which is great
Posted on 5/31/20 10:59 PM
Yes, I've been on it since December 2018 and love it. I have my next full infusion this Thursday the 4th. What questions did you all have, feel free to ask me anything? The only really bad side effect was hair thinning. Right at the year mark it got healthier and longer. So I'm loving my new hair since I got it cut around the holidays.
Posted on 6/1/20 12:08 PM
I started it August 2018 after using Avonex off and on for years followed by Copaxone for one year. I always get a bump of feeling better for a little while after taking it. It is so easy. It has definitely slowed any progression down. I still work full time as a nurse practitioner and at first I worried about that. I feel great while I am on it. I use caution such as ill people have to wear a mask and I wear one. I also practice good hand-washing. The same stuff we should all be practicing now because of COVID-19. Try it. I hope it works as well for you. Message me if you have questions.
Posted on 6/8/20 5:18 PM
@Jenn0624 @jlmarnp Wow, it is so great finally getting some answers and experiences on this! I'm glad to hear that it's working for you! I've heard that it is good at slowing progression, so it's good to have that confirmed from you both on here! So the only side effect you've both experienced is hair thinning?
Posted on 6/12/20 3:51 PM
I had my initial dose of Ocrevus in March, 2019. I had a severe infusion side effect...extreme pain throughout my body, especially in my head 6 hours after the infusion ended, That has persisted with every treatment since so guess that won't change. I also had Shingles after the first infusion even though my numbers were off the chart high for not getting it AND I have never had chicken pox. My Shingles were very mild...only 2 place were affected and they were gone within several days of using lavender oil on them. I have seen a marked difference in my ability to keep active and have begun doing daily exercise (instead of weekly before I began this DMT).
Posted on 6/17/20 4:49 AM
Posted on 6/18/20 12:22 AM
I think most of us are looking for a DMT that will show positive changes and the truth is that these DMTs aren't a cure or a reversal of the disease. They, at best, help to halt the disease but mostly just slow it down. Most of my experience with DMTs has been positive, though Avonex almost did me in, but I have told myself that any subtle improvement in my ability to stay active, take care of my family and be a vital part of society is the most that I can hope for with this disease. MS is not curable at this point in time and knowing that we take the little victories over this disease and rejoice that we are mobile (even if we need some assistance) and that we are here for each other to celebrate the victories and to support each other during the disappointments.