Neuro appt and answer to some of my ?s

[erash]

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 😖

[Iona60]

Woops, I followed your research showing that the flu vaccine was most effective 3 months before next infusion and got mine. I Hope that it works.

[erash in reply to Iona60]

I don’t think what my neuro said was gospel

They just don’t know

And u need to get flu shot in flu season

[Raingrrl in reply to Iona60]

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.

[Iona60 in reply to Raingrrl]

I think that I was told either 4 or 6 weeks prior for the pneumonia vaccine that I got last December.

[Jesmcd2 CommunityAmbassador]

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.

And YES YOU ARE A MIRACLE!!!🤗💕 So blah on her!!😒

J🌠🎃

[kdali in reply to Jesmcd2]

I get the T2...I’m afraid if I get the 3 and they see more, some DA will say I’m worse. Also, there’s nothing left for me to take 🤷‍♀️

[erash in reply to Jesmcd2]

T3

Based on what I read this am and the nausea, I will stick with t 3

I will post article later

[OKgal]

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.

[kdali in reply to OKgal]

I love how they prepare us for the worst though...and I wonder what “usually” means? 51% of the 1%?

[kdali]

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.

[erash in reply to kdali]

Me too

Let me prove her wrong 👊

[kdali in reply to erash]

Yasss! Let’s be statistical freaks!

[kdali]

Also....can I just say....there’s our shoe dropping! 🤣🤣🤣🤣 Suck it, devil shoe, I’ve got a few good months left!

[kdali]

Also, here’s my husband’s 2 cents: “there’s not enough clinical experience to make generalizations yet.” 😍🙌🏻🕺

[jimeka in reply to kdali]

Well said hubby 😊

[Raingrrl in reply to kdali]

I agree with your hubby. Anecdotal doesn’t do it for me though it helps me stay hopeful.

[carolek572 CommunityAmbassador]

Good Questions!

I have a few for my next appointment with my neuro ~

Can I donate blood while on Ocrevus, and should I?

Ocrevus breathing risks? What have you (doctor) seen?

Is there an age when Ocrevus treatments stop?

CD19(CD20) 0.8% prior to last infusion ~ can/will infusions be further spaced out? Every year instead of every 6 months , for example.

And like, you, I am part of the 'blah, blah' group (#6)

Keep Smiling,

Carole

[erash in reply to carolek572]

My ? About B cell count is your ? About cd18

I wonder if we get same answer

Why ur breathing ?

[carolek572 CommunityAmbassador in reply to erash]

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.

I will let you know what my neuro says.

Keep Smiling,

Carole

[Raingrrl]

Great questions erash ! Thanks for posting. You’ve inspired me to write out my questions for my next neuro appt which is in a couple of weeks.

[greaterexp]

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.

[goatgal]

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.

[erash in reply to goatgal]

My neuro is my former student so I’m sure she expects these questions from me 😊

[goatgal in reply to erash]

erash Ah, that explains a great deal: you have mutual respect and a shared experience.

[Raingrrl in reply to goatgal]

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. 🙂

[goatgal in reply to Raingrrl]

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.

[Raingrrl in reply to goatgal]

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.

[erash in reply to Raingrrl]

Boo hiss to that neuro

[Allen5280 in reply to erash]

I second the emotion erash !