Disturbing

[Jackjosh]

I read that 10 people have died on ocrevus due to pml. Out of the 10 people only one of them had been on only ocrevus. I'm scared of that I don't want to die yet. Pml scares me bad. I am jc positive but they said its not that high 🙄. They don't know I'm thinking about asking to switch meds idk

[erash]

Hmmm maybe they should start screening for kc in people on o

[erash in reply to erash]

Jc not kc

[kdali in reply to erash]

Like with Tysabri? To see if the antibodies are rising? That would be comforting, but then what do you take? Nothing 🤷‍♀️

[kdali]

I would ask their protocol for treating PML symptoms. It is treatable if caught soon, but like you, I don’t want to go there. The symptoms are similar to stroke and happens over days to weeks. What medication have you considered?

[starlight5]

Worrisome.... I am JC positive also and on ocrevus. Perhaps it is time for a chat with my ms neuro about jc levels, pml, and ocrevus...

I just read an article that although there have been 10 cases of pml with ocrevus, 9 had previously been on tysabri or gilenya. A 78 yr old man who had been on ocrevus for 2 yrs and no previous dmt died from pml. Drs believe his age may have played a role in pml infection...

multiplesclerosisnewstoday....

[kdali in reply to starlight5]

Ty for the link. I wonder why he was only treated with Keytruda or why he was rapidly progressing for 2 weeks before anything was done...or of other details were left out. I read the JAMA link in the article too. My antibodies are higher than his were.

[kdali in reply to kdali]

I just rattled this off to a MD who is not even neuro, and the response was “that’s not how you treat PML!”.

[Sandydemop in reply to kdali]

How do you treat PML?

[kdali in reply to Sandydemop]

That’s what I’d like to know about my hospital and I bet it’s a little different at each facility, but I thought plasma exchange and early treatment was standard, and I’m wrong. I’ve seen mirtazapine and mefloquine used. I did search for and see Keytruda as a “promising” new treatment for 5 out of 8, over a course of 6 weeks. The man on Ocrveus, I believe, did not live 6 weeks after onset of stroke like symptoms. My last favorite post from people on Kesimpta was their last JC antibody level, some are almost at 5, and I wonder at what point does it become a concern? 🤔

[Sandydemop in reply to kdali]

@kdali you are certainly very educated about this topic what is your JC antibody level?

[kdali in reply to Sandydemop]

I am because I’m getting concerned with Mavenclad looking like a good next choice. My JC was 2.8, 3 years ago, before Ocrevus.

[erash in reply to starlight5]

Thank you I remember reading that too now. Puts in better perspective. Still a good idea to test for the JC virus...

[kdali in reply to erash]

I agree! I forgot about this and need to add it to my growing list of labs 😱

[kdali]

my.clevelandclinic.org/depa...

[erash in reply to kdali]

Great info

Thank you

[ahrogers in reply to kdali]

Great to read 75% survival rate! Interesting info on Mirtazapine (Remeron). Maybe it should be the go to antidepressant for people with MS!!Hopefully if I ever get PML I will have enough cognitive function to remember this info 😁

[kdali in reply to ahrogers]

I’m going to have to look up remeron now, I don’t remember it except old people take it. Do you know your JC antibody level? You probably will...for a week at least 🤷‍♀️

[ahrogers in reply to kdali]

I don't remember the exact number of my JC level but I know it was elevated but it didn't seem crazy high. It did influence what DMT I went on though and Ocrevus didn't have any cases of PML during the early studies back when I went on the trial I signed up for. I will ask to have a new level drawn with my labs in June before my next Ocrevus infusion. I know at the cancer center where I used to work Remeron was popular with palliative care because it also stimulates appetite (something I don't really need 😀) but I don't think it really stimulates it very much, or at least my patients didn't really report that to me.

[kdali in reply to ahrogers]

I think there are some limits to stimulating appetite in that situation...marinol does not seem to help with that much either 😞 I really loved working with palliative care people. What other labs to you get before your infusion?

[ahrogers in reply to kdali]

Lately just CBC and CMP but when I first moved here they did CD19 a couple times. It was barely detectable the first time when I was overdue for Ocrevus and zero after getting back on it. Haven't had JC level in several years.Agree, Marinol is pretty much useless! But love palliative care too!!!

[kdali in reply to ahrogers]

Ty!

[Turtlepie]

I would be like you. My prayers are with you

[kycmary]

I understand being scared I have been on Ocrevus for 2 &1/2 yrs now & everything is good I am also jc positive you need to talk to your Dr. explain how you feel. Where did you read about the people who died? I would like to read this also thank you Mary

[Jackjosh in reply to kycmary]

I get ms daily news emails

[kycmary in reply to Jackjosh]

I signed up for that thanks

[kycmary]

I have just read the article it is scary & I will be putting in a call to my Neuro tomorrow. I doon't know of any other DMT out that can hold back my MS so I will stay with Ocrevus!

[rjoneslaw]

that number is low compared to how people are on it. i'm sure they didn't tell you everything in the article. People die all the time from something sorry to be harsh but its true . we cant let fear stop u from doing something. everything has list of warning a mile long. for example every med we take

[kycmary in reply to rjoneslaw]

Hi rjoneslaw I know that & I am NOT going to stop O it is holding my MS in check for now. What scares me is if my MS busts loose again! I'll deal with that when & if it happens no sense worrying until it happens. Thanks for caring love ya Mary

[pamgarner]

could you tell me where you read this, i like to keep up with it

[Jackjosh in reply to pamgarner]

Ms daily news

[pamgarner in reply to Jackjosh]

thank you

[ROGERMRAC]

I have found Nothing in regards to that. Those 10 people were also prior to O on other DMD that are linked to causing PML No one has died on O only, Only Dr, Google, and nurse facebook show that PML is caused by O, No info on 10 people dying of PML. Can you confirm this info? because I find nothing.

[Jackjosh in reply to ROGERMRAC]

All but one

[Jackjosh]

multiplesclerosisnewstoday....

[Jackjosh]

Ocrevus and PML: Should We Be Worried?

[Jackjosh]

That's what it's under

[JTZES]

Like you PML scares me. Ocrevus though has been beneficial at preventing new exerbation's over the last two years. When you look at the number of patients that are on Ocrevus 10 people is a very low percentage.

You'll find it a much higher success rate than you would for vaccinated COVID-19 patients

Just out of curiosity have you researched DMT'S that didn't have the possibility of causing PML? Not many.

[Jackjosh in reply to JTZES]

Not many of them

[CalfeeChick CommunityAmbassador]

I would definitely consider switching to another med that you & doc feel good about. I had 2 infusions last summer of Rituxan. Haven’t been able to restart because I’d become very anemic. MS seems to be staying level for now!

[JTZES]

Just like the J&J COVID-19 vaccine. The overall numbers out weigh the benefits of its usefulness of using it. I am ppml and have not had any new exerbation's since being on it. So it has it's benefits. If you research most DMT'S can cause PML. It's a very low percentage of the overall usage.

[dallas343]

That’s a real concern. Please make sure that you consider switching to something else.

[Sandydemop]

My doc won’t let me go on anything like that because I’m also JC pos

[Humbrd]

After my Ms diagnosis in 2018 my doctor immediately tested me and I was JC positive. He told me about the risk with PML with several medications. I wasn't willing to take the risk. So it's a low risk of it happening? Ok. But I also thought it was also a low risk of me getting multiple sclerosis. So I know anything is possible. I've been on aubagio since diagnosis and it is working out very well for me and doesn't have that risk. Everyone has to make their own decisions about what's best for them and how safe they feel.

[Sweetheartonvdayl]

Nh