1. Measuring B cells to determine Ocrevus infusion timing? “We used to do this for Rituxan but because we are worried about loss of insurance coverage if we tried to change infusion schedule, we don’t do this.”
2. “Get most vaccines 1 mos. before next infusion. Because my next O infusion is in March, Flu vaccine 2 mos after last infusion.”
3. I want quantification on brain atrophy rate. Unfortunately, the radiologist she uses doesn’t do this. Now that I’ve begun a DMT, “it wouldn’t make difference in treatment plan.”
4. Who does Tesla 7 MRI (more sensitive test). “Miami is closest. A lot of nausea and vomiting with T7 and they are trying to work that out.” (I’ll pass because I wonder what other side effects from those big magnets?)
5. What about recent research that shows linear and macrocyclic gadolinium to be same in amount gad retention in brain? (Was thought macrocyclic was safer). “I had not seen that research”
6. What responses have you seen to Ocrevus? “Some get slight benefit, some no changes, no miracles” I told her I’m a miracle. She said, “you are one of the 1%. Those people usually don’t do as well after the next infusions.”
I choose not to believe that last statement and bah humbug 😖
Written by
erash
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I just got my flu vaccine and I’m about 6 weeks away from the next infusion. I was given the 6 weeks time frame my PCP and my 2 family members that are in medicine. But...who the heck really knows.
Great questions erash and sounds like you're neuro answered them pretty honestly. Even if not the way you wanted. 😒 Isn't the T7 for research purposes only? I think I read that🤔 What T do you have? I get the T3 I'm pretty sure that's as high as it goes here.
Bah humbug to the number 6 response is right. There’s clinical data of CDI (confirmed disability improvement). 🤨 I don’t recall percentages being applied to the number of patients receiving Ocrevus yet. It’s probably too early as the studies are ongoing.
Thanks for sharing your Q&A!!! I’m not a fan of that last statement, but then there’s Allen, so we shall see.
I also say to that, bring it! Before the next infusion I will do all I can to be as healthy as possible. This may be a gift, and so I will earn my blessing.
Yes, and I just have a question regarding how long are the counts suppressed before I need another infusion.
Why am I breathing? Not sure how to answer. I have had no issues with regards to breathing issues but I am concerned about breathing issues while on Ocrevus given that we are headed into the winter season.
You came armed with great questions. But how long has Ocrevus been out? I know the approval takes forever, but there is still much that isn’t known. We hear from folks here that they’ve seen some miraculous changes with it. Sure, it’s good to face reality, but Ocrevus shows too much promise to downplay it so much.
I wish everyone the best with their experiences with Ocrevus! Thank you for posting the questions and answers. It would interesting to hear what other neurologists are saying.
erash Well done with your questions! My guess is that many neuros and physicians would find them a bit threatening; in my experience, doctors in general don't like to be questioned, perhaps because most of the time they have a great deal of control/power. Your "bah, humbug" reaction is warranted; neuro's last answer was somewhat condescending and I'm not sure of its accuracy.
goatgal ...I agree that many doctors don’t like to be questioned but that is a big red flag for me and leads me to look for another doctor. Not to be dramatic, but blind faith in doctors almost cost me my life when I was 22 so that experience influences me still.
Both my primary care and my neuro are used to me asking questions and researching things for myself. I sometimes bring in articles or info on studies that I want to discuss. I guess I’m lucky that I have doctors that are ok with that, and like with erash , actually expect it from me. The social worker at the MS clinic I go to has remarked more than once about my neuro treating me like a colleague sometimes instead of just a patient. 🙂
Raingrrl One of the benefits of both MSAA and NMSS in the U.S. are their publications and websites which have solid reliable information for those of us diagnosed with MS. It would be a service to the newly diagnosed to be told by diagnosticians where accurate information is available. In my case, I didn't stumble on their web sites until later in my MS journey, so when I was newly diagnosed, the only questions I thought to ask were simple, easily answered (or dismissed). Now, of course, thanks to the educated posts from those like you, erash and kdali who have deep science backgrounds and more experience than I, as well as many others here, I know more about the kinds of questions I should be asking about my own disease as well as the manner in which they should be dealt with. So I am learning to keep a list and ask questions...but it is still difficult to find a neurologist specializing in MS who is able to listen to a question and treat the person asking it as someone capable of receiving an honest and accurate answer.
I'll never forget the first neuro I saw during my diagnosis journey. He was a jerk to the nth degree. Told me, prior to any examination, that the fatigue was likely due to stress from being a middle-aged single Mom with a full time job that required being oncall. His claim was that lifestyle would make anyone fatigued.
He then did a cursory exam and gave me a diagnosis of transverse myelitis. (That didn't match my symptoms at all.) Then he said, "I know you work in technology but don't look this up on the internet because the information out there is not trustworthy." That was like waving a red flag in my face! Of course, the first thing I did when I got home was to get onto the internet and look it up! He was full of it because even waaaay back then, there were legit medical websites; you just needed to be aware of which ones were reliable.
This guy was not an MS neuro just a garden variety neuro with a massive ego and a condescending manner. I never saw him again.
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Today's Neuro Appt.
Experience with First Round of Ocrevus
