Ocrevus

[Crystalgirbo]

Was just diagnosed with ms and the doctor wants me to take ocrevus but I'm jc positive so I'm scared cause of pml so was wondering if anyone has been on this being jc positive

[Royjr]

Being JC positive might be the reason they want you to go on Ocrevus. Not sure but that’s a good question to ask your doctors.

[Allen5280]

Hello Crystalgirbo , I also tested positive with a high JCV count. I don't know the particulars. I wouldn't take Tysabri which was at the time of my diagnosis in 2014. I have been on Ocrevus since May of 2017 with no issues with PML. It's my understanding that it is a very low possibility and as far as I am aware the incidences of PML with Ocrevus have been those whom had switched off Tysabri within a short peroids of time so they are attffibuting the cases to Tysabri which has a high chance of occurrence with JCV and PML. I saw someone had posted a chart of the DMT's and their success and danger levels here in the recent past. As a matter of fact if my memory serves me correctly it would be kdali that posted that info when she was considering Ocrevus. You might look at her profile then under her posts tabs. She posts a LOT of good info! 😁 hope that helps you in your up-and-coming decision.

Allen

[kdali in reply to Allen5280]

Guilty! 😍

[MS_Indestructible in reply to kdali]

Of course LOL

[erash in reply to Allen5280]

Concur

[kdali]

Ocrevus or Interferons were my only options because I am very JC positive. Ocrevus was the obvious winner for me.

[Jesmcd2 CommunityAmbassador in reply to kdali]

Writing this down for Thurs. Appointment kdali 😄 😂 How is baby 🐝 do you have a Halloween costume picked out yet?? You can make her a 🐝!!💕😂

🤗💕

J🎃👻

[kdali in reply to Jesmcd2]

What happens Thurs?? Are you changing meds?! She’s awesome and also a TODDLER 😵 I don’t, and I’m embarrassed because it’s my favorite holiday! I have no idea if it’s going to be 30 degrees or 70 and right now she doesn’t do things on her head, so most of the cute ones are out unless headless bees are a thing 😂

[Jesmcd2 CommunityAmbassador in reply to kdali]

MRI and neuro Thurs. And after this last relaspe, I will be interested in what he has to say. Besides another MRI.😒 kdali So I don't know, but I like having answers before I go!!🤣😂

Face painting with a q-tip is always good a that age! Good luck!🤣👻

🤗💕

J🌠🎃

[kdali in reply to Jesmcd2]

Good luck with your scan and exam! I posted some helpful charts a while back when I was deciding, I’ll see if I can bump it up.

I bet seeing herself in the mirror with face paint would be super cute! 😍

[erash in reply to kdali]

kdali are they doing anything different to monitor you...more frequent MRIs etc.? Just curious since the oncologist overseeing my infusions was surprised I hadn’t been tested for the JC virus prior to starting O. No rationale except everyone else he was overseeing had been tested.

Because My neuro didn’t suggest and the research doesn’t demo O risk and because the lab was being a pain to schedule testing, I figure whatever my JC virus status is they would still begin the O. I’ll just monitor symptoms and ask that the radiologist check my MRIs closely for PML 🤷‍♀️

[dianekjs]

Being JCV positive is NOT considered a risk factor or contraindication for Ocrevus, in fact, because it's not considered a factor, most MS specialists don't even check JCV status before prescribing Ocrevus. There have been zero cases of PML associated with Ocrevus, and large-scale trials were conducted for 8 years, so there's a lot of data. There have also been no PML cases attributed to Rituxan in MS, and Rituxan is extremely similar to Ocrevus. Neurologists are switching JCV+ patients over to Ocrevus for exactly this reason, it is considered one of the safest MS DMDs available while also being one of the most highly effective. Your doctor should have explained this to you, I'm sorry you have been frightened.

I've been on Ocrevus for over a year now, and have had good results thus far. No new lesions since starting and I just had new MRI scans last month, and I've had clear improvement in numerous symptoms. Other than possible infusion reactions which are usually easily managed, side effects between the six month infusions are rare. All drugs affect individuals differently, but Ocrevus has been a great choice for me, no regrets.

[MS_Indestructible in reply to dianekjs]

I Just had my 8th infusion of Rituxan. Still don't know my jcv number as my neuro does not test for it. I'm not concerned for PML and Ocrevus should be much safer. Hands down Ocrevus is the best.

[erash in reply to dianekjs]

I think I recall reading There was PML with higher doses of Rituxan used to treat other diseases? Is that accurate?

[dianekjs in reply to erash]

Hi erash , there have been cases with Rituxan when it was used in combination with another immunosuppressant to treat other conditions, but not MS. The addition of another immunosuppressant seems to elevate the risk, although it is still considered to be quite low.

[kdali]

I “bumped” my old posts so they could be found easier. GL on your decision, I know it’s a stressful time!

[MS_Indestructible in reply to kdali]

? how do you bump, I meant "bump" old posts

[kdali in reply to MS_Indestructible]

I scrolled down my list of posts from my page and found the old ones and typed “bump” so they would refresh on the current topics page. You could also tag someone and that would work too.

[MS_Indestructible in reply to kdali]

thank you. that makes a lot of sense.

[ahrogers]

I was diagnosed in 2014 before Ocrevus was available and tested jc positive. I have been on Gilenya and Rebif but progressed on both. Went on an Ocrevus trial a little over 2 years ago with no problems other than the mild rash on the first infusion. It was only on a small part of the side of my face and I wouldn't have known it was there but the nurse saw it and slowed the infusion for a little while and it went away. Never happened again and I have had no side effects. I love only having to go for treatment every 6 months. Rebif meant injection site reactions and if I forgot to take ibuprofen with it would have chills and aches all night. No side effects from Gilenya but I progressed after 6 months of taking so switched to Rebif then to the Ocrevus trial a year later due to further progression.

Good luck to you. May whatever you choose slow this beast to a hibernating snail's pace!!

[Jackjosh]

I've only had one dose so far but I am JC positive there is no known PMl cases so far

[Juliew19673]

I do not believe I was tested for JVC and have had the 1st double dose of Ocrevus - no side effects. I'm looking forward to November when I will get the second and first - full dose. I think I'm doing much better - not sure if Ocrevus gets the credit or the combo of that and everything else.