Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Is anyone on ocrevus and feeling worse?
I've only had the first 2 half doses. Last one march. Fought thrush infection for nearly 2 months. Fevers off n on and head pain ever since.
Treatment is worse than just the disease itself.
I think I'm done with Ocrevus.
I called neuro office last week and cancelled my appt for my infusion for july.
I am sorry that you have had only 1 response. Just joined this evening,
I have had 2 doses (well 3, 1st was 2 half doses). My "issues" have increased and so far have not realized any improvement. My Neuro would like me to get 1 more infusion and then we would make the call to stay of seek another solution. What I have seen and the MS Society supports this, no one of us have the same issues (in general) and what I have researched is the meds for MS are targeted to a particular cell. since my initial diagnosis in Dec 2006, I was on Rebif to start for a few years and when that seemed no longer effective went to Gilenya (spelling?), as it seemed if you lived past the first few hours of the first dose there seemed to be good supporting evidence of the efficacy of this med. Well many years later where my symptoms have worsened, I switched to Ocrevus. My son's friend who also has MS, she is taking this for 2 years and her reaction and lapses improved. Also, as far as the Ocrevus issues you experienced, may I suggest contacting the FDA's adverse reaction hot line to report what you have and are experiencing. If the report makes it to the manufacturer from the FDA, they will work on how the drug may have contributed to what you are now experiencing Just a suggestion. On the positive side, there continues t be greater and more effective meds on the market and in the pipeline. Although hmmmingbird's suggestion to split the dose is not as simple as it may sound. Ocrevus is a Biologics pharmaceutical and is not as simple as small molecule meds (pills, liquids and such). I would contact the manufacturer customer support line and explain it to them (also be warned, they are legally bound to report this to the FDA as an adverse reaction. It is not a bad thing and for most pharma companies this information feeds into their continuous improvement programs.
I was supposed to have my first full dose sept 13th but cancelled.
The thrush battle is still ongoing today. Also after I posted this I found out the reasons for my fevers and headaches and bodyaches. My entire face cavities and sinuses were infected also my ears and chest. The upper respiratory infections that ocrevus says that can happen. My immune system is now shot. I began throwing up and having throat issues among several others.
I decided no more ocrevus.
I have lost 27lbs and cannot eat as my esophagus is having issues that my GI doctor thinks is due to ocrevus. He has referred me to UAB in birmingham alabama. My appt is in December. Hopefully all goes well.
To date I have lost 50lbs. Had numerous tests. I have remained off of any MS treatments. My neurologists was not happy with me so I have not seen her in a couple of years. I'm in search of a Specialist. I hope you are doing well on Ocrevus.