MS Speaks

Multiple Sclerosis => TREATMENTS => OCREVUS (ocrelizumab) => Topic started by: ewizabeth on April 26, 2019, 11:27:20 am

Title: My doctor thinks I should start taking Ocrevus
Post by: ewizabeth on April 26, 2019, 11:27:20 am
I've been off Aubagio for six months and my leg weakness seems to be getting worse. My energy levels are worse as well. I'll be getting a new MRI of the brain next week and the neuro is giving me EMG tests in my legs as well (not sure what that's for) but I'm still having a lot of back and leg pain too. It will be interesting to see if Medicare approves the Ocrevus. They denied my injectable B12 last week and that's only $8 per month. I guess I'll find out.
Title: Re: My doctor thinks I should start taking Ocrevus
Post by: agate on April 27, 2019, 04:03:49 pm
I always have a problem with wondering about MS drugs when people say they stopped taking one and then got worse, whereas while they were taking the drug, they seemed stable.
I wonder about them because MS can have that kind of course even without any drugs. It can be stable for years and then suddenly it starts getting worse. How to know whether the worsening these people notice after stopping an MS drug wouldn't have happened anyway?

The MS drugs have been shown to be helpful for a fair percentage of people with MS, particularly if they're still having relapses. If you aren't having relapses any more, it looks more and more as if no MS drug will be nearly as likely to benefit you.

About Medicare coverage, there should be a number to call to find out about whether your situation would include coverage for Ocrevus, but getting information about any medical coverage can be an involved process. It may be one you'll need to go through unless the prescribing doctor's office is willing to help you. They might even find out for you and spare you all of the calling.

Good luck with the MRI and the EMG testing!There is this about EMG:

Title: Re: My doctor thinks I should start taking Ocrevus
Post by: ewizabeth on April 28, 2019, 08:55:18 am
I have noticed that there seems to be fewer people disabled now than there was years ago, largely in part because of treatment availability.

My neurologist is a local guy with two offices and he's very busy. He doesn't make a lot of money from the drug companies like my first one did. Dr Wynn, the first one was making about a million dollars per year from the drug companies the last time I checked (though he conducts clinical trials too.) Dr Ta, the current one made around twenty thousand. I don't think he's pushing people to take medicines unless it really seems necessary. He was ok with me stopping meds until I started getting worse again. My fatigue is pretty bad, my walking is worse and legs weaker (might be related to my back?) and I had to add another AD for my mood. I suppose the MRI will tell us something?

I've been looking at some Ocrevus groups online, those not managed by the drug company, and most seem to be doing pretty well without side effects.

I guess I'll wait and see what the MRI shows and then think about it some more.

Title: Re: My doctor thinks I should start taking Ocrevus
Post by: agate on April 28, 2019, 09:45:53 pm
Dr. Ta's twenty thousand is still a lot of money but looks paltry alongside the other doctor's million.  I hope the MRI will provide some answers.

I have a neuro who is fairly young but she seems willing to let me decide, and she has a good sense for when to back off, I think.

Title: Re: My doctor thinks I should start taking Ocrevus
Post by: ewizabeth on July 17, 2019, 06:52:22 am
I did a Google search for Ocrevus and your forum was one of the first pages of links Agate.  :) 

Well I started Ocrevus a week ago. I had the first half-dose. It went well, better than expected. My only reaction was a slight headache and that was likely from the steroids. They gave me a 250 mg drip, a long saline drip, extra strength Tylenol and 25 mg of Benadryl. I felt tired the first night when I got home but I kept drinking lots of water to help flush my system. The next day I felt wonderful from the steroids. I had no pains, lots of energy and a good mood. I got a lot of little jobs done around the house. The second day I was wiped out, sat around all day, tired as usual, and the third day all of my pain was back, business as usual.

Yesterday I had another good day like the day after the infusion. I even worked out in the yard for 90 minutes in the sun, heat, and humidity. I pulled lots of weeds and tended to the garden.

I get the second half dose next Wednesday, two weeks after the first. After that I'll be on the six month schedule. I'm really hopeful that this might even make me feel better.

I'm wondering if it has a whole body effect on inflammation when it wipes out the B cells. Because I've noticed an improvement in my IBS symptoms over that past few days.
Title: Re: My doctor thinks I should start taking Ocrevus
Post by: agate on July 17, 2019, 07:02:24 am
Sounds as if this went well!  Being able to do 90 minutes of yard work in the hot sun--that's amazing.

I hope the second dose goes well too!