Ocrevus Q&A, Part 2

Ocrevus Q&A, Part 2


Editor’s note: This is the second of a two-part series on readers’ comments about Ocrevus (ocrelizumab). Read part one here.

Last week, I responded to a few comments on columns regarding my personal experience with Ocrevus (ocrelizumab). Here are more reader comments and my answers. I hope you find these useful.

And the question is?

Sometimes I’m not quite sure what the comment is meant to convey, but I only can hope this person was trying to say they were going to find out more.

“Diagnosed with PPMS 2 years ago. I am currently not on any DMT. I have some lesions on brain and none on spine. My issues are left leg foot drop, hyperextended knee, balance, fatigue and heat sensitivity. I can do things as I used to just at a slower pace and with rests in between major tasks.”

It’s significant to note that Ocrevus is the first and only disease-modifying therapy approved for use in people with progressive forms of MS. It’s about time there was a treatment tested that shows promise for everyone. Until now, there were no options to slow MS, just ways to treat symptoms.

They said what?

Then there are the comments that make me wonder if something was lost in translation, or poor medical information is being shared.

“My MD said I had to have an active lesions to start the medication! I have had MS since 1990 and just now getting progressively worse. Is it true that you have to have an active lesion to start the medication?”

“My doctor talked to me about this drug. Advised I would need a spinal tap to get insurance approval. I am excited and reluctant to start any type of drug therapy.”

I’m not sure why the doctors would say you need active lesions or a spinal tap prior to getting ocrelizumab approval, and I don’t find that as a requirement anywhere in the Ocrevus information. When I hear these types of comments, I almost always wonder if the person is being treated by a general neurologist and not one who specializes in MS.

The naysayers

And of course, there will always be those people who have a less-than-positive response. Here are two that jumped out at me or pounced on my words.

“so, she ‘thinks’ she feels better…wow, what a statement”

“So we are the results, that’s (sic) the way it has always has to be, good or bad and trial and error! Aren’t there any convicts with MS available to try this on?”

This was in response to the fact I am now in a wait-and-see pattern — I don’t know if ocrelizumab is going to work for me or not and it will take time to find out for sure. I have noticed a few small things that make me “think” I might feel better, but I am also aware of the placebo effect. If I know this drug is going to help, I can trick my brain and body into thinking it has improved. So, I stand by my statement — I think I feel better.

The second comment I hope was just made out of frustration. Testing drugs on people against their will or informed consent, convicts or not, has been illegal for decades. Engaging in trials always should be an option and not forced onto anyone.

There is a large demand for more personal experiences with ocrelizumab, and I hope my replies are useful. Next up for me is an MRI in late November to make sure ocrelizumab is keeping the MS activity in my brain quiet. Until then, I’ll keep hoping for the best while I wait for my results.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Related --

8 comments

  1. Chrissy Zamoyska says:

    Hi
    Reading the comments above I thought I had to share my experiences. I was diagnosed with PPMS 7 years ago and joined the Ocrevus trial in 2013. I have 2 infusions left on the trial. I think people need to realise it is not a cure or a drug that will improve your MS just hopefully slow it down. I started the trial with an EDSS score of 3 and have now progressed to 4. It doesn’t make me feel better but I am hoping that it will keep it at bay!

  2. AS says:

    Sorry! I was the person who sent the first comment. I guess I forgot to ask the question at the end! 2 questions actually: 1) should I get a spinal tap to ensure that I actually have MS before getting infusions in my body and 2) should I try Ocrevus now or wait until my symptoms get worse? I have been holding steady for 2 years.

    Thanks.

  3. Joy Francis says:

    I had my first half infusion the end of June 2017 and 2nd half beginning of July 2017 I was walking with a rollator walker. After breaking my leg in August 2017 today I am walking without any assistance.

  4. Betty Beem says:

    I was interested in the person who said his/her physician would not prescribe a DMT until active lesions were present or after a spinal tap. When I was diagnosed, I was seeing an MS specialist who was very active in the MS Society. He would not prescribe A DMT as I was not “bad enough”. He predicted that I would not be mobile by the year 2000. He was incorrect. He was not accessible when I had exacerbations or at any other time. Never once was any phone call returned. Never was a neurological evaluation done at office visits. Never did he observe my gait or evaluate muscle strength. When I moved to a different city, his office would not respond to any of my neurologist’s requests for records. A release of information signed by me had already been given to his office. In my personal opinion, this individual should not be permitted to practice medicine.

  5. william Nye says:

    Iam about to start ocrevus infusions and would like to hear from some people who have taken it already. Like the other gentleman I have been diagnosed with MS since 1980 and only for the last 10 years have I been getting steadily worse so I am so ready to do something that might help me.

    • Kevin G says:

      William Nye,

      I’m in a very different boat than you are: diagnosed at the beginning of this year, age 26. I just started Ocrevus in October, but you might be interested in some thoughts anyway.

      I was on Plegridy (peginterferon beta-1a) for the better part of this year and it was pretty rough on me. I had some worse than average side effects.

      Once I was off, I started feeling a bit better, and then I started Ocrevus. Two big takeaways for me:

      1. I had zero side effects. No infusion reactions, no tiredness. It went well. One 18 year old girl getting her infusion next to me complained about nausea after the first dose, but she otherwise had no complaints.

      2. I’ve seen mild (yet significant!) improvement to some symptoms already. The most significant of which is more energy. I’m able to get through the whole day plus grocery shopping after work/other tasks without having to lay on the floor for an hour exhausted with wobbly legs. Not that I don’t get tired out still, but it’s noticeably less. Walking speed is up too, especially in the earlier half of the day.

      I’ve also noticed some minor improvement to my left eye visual field troubles. Couldn’t drive with only my left eye, but it’s a step.

      All in all, I’m a huge fan. Lot’s of comments online are presenting worst case scenarios (kinda like negative movie reviews). But I’ve had a great experience. Hoping for further improvement over the coming months.

  6. Gary W. says:

    I was diagnosed in 2007 with PPMS had my first ocrevus infusion on 6-7-2017 and the second 2 weeks later my next one is set for 12-7-2017 I have noticed nothing so far, I did not have any side effects [which is a good thing] in some of my readings about ocrevus it seems like it will take awhile to build up in your system before you notice anything, but some of the results that people have talked about are encouraging is there any one out there on my same time schedule for infusions that they would share there information, thanks Gary.

Leave a Comment

Your email address will not be published. Required fields are marked *