Help please

[anetap4545]

Hi all , if you have a high jcv is kesimpta ok to take? Anyone on kesimpta, would love dome feedback 🙂 🧡 any symptoms? I'm terrified of getting heart pslps orvertigo honestly please xx worry wart over here

[agate]

Hi, anetap4545,

I looked up the Prescribing Information on Kesimpta, and it looks as if prescribers are being told that PML might be possible when taking Kesimpta but nothing is said about a high JCV score excluding you from taking it. It does say that anyone showing any symptoms of PML should be taken off Kesimpta immediately, though.

Here is the information but it's a .pdf file and I'm not sure you'll be able to see it. See sections 5.1 and 17 if you can see it.

accessdata.fda.gov/drugsatf...

[Cwright170994]

Kesimpta is ok to take.m, as it uses the same processes as ocrevus. I was tried on tysabri once, but I could only have the one dose because, when I had the bloods taken that day, it showed I have a high JCV antibody titre, and they put me back on copaxone. Got moved onto ocrevus in 2021, and I had a letter last year saying I was eligible for Kesimpta.

The only thing I have to say is that I chose to stop taking it in January this year. I had a status epilepticus event the day before I was due to do my injection. The day I was due to take my Kesimpta, I was home again (so one night stay) and it was a Saturday. I didn't realise I should have let my MS nursing team know before I did it. My brain was going through "start up" again. That's not really a new symptom; I've had generalised seizures since 2020 and my 1st status epilepticus event got me hospitalised for 27 days and moved from copaxone to ocrevus in 2021.

If you're worried or concerned, speak to your MS team. They'll let you know why you've been given that option 🫂

[anetap4545 in reply to Cwright170994]

I'm so sorry you had to go through that. How scary. Are you kesimpta now?

[Cwright170994 in reply to anetap4545]

Not any more 😕 I've gone back on ocrevus

[anetap4545 in reply to Cwright170994]

Kesempta gave you seizures?

[Cwright170994 in reply to anetap4545]

No, the simple partial seizures were my 1st MS symptom back in 2013 🤷‍♀️ they're the reason I knew I had to see a neurologist. I was started on copaxone when I was given my clinically definite diagnosis in Nov 2015, but in 2020 I started having generalised seizures.

I was living in my new house with my fiance (now husband), and one evening I had the 1st of my generalised seizures in 2020. I'm happy I showed my husband what to do when someone's having a seizure the year before! His best friend had one when it was just the 3 of us. I went straight into "Emergency Mode," instantly remembering all that I learned during my couple of years doing a nursing degree. The night when I had my 1st generalised one, I remember going from our bedroom to our bathroom and back, calling out his name. He came upstairs to find out what I wanted, to which I had the fit as soon as he walked into our bedroom behind me. I remember waking up the next morning, remembering bits just before my seizure the day before.

But no, it's only my immune system causing me to move into generalised from simple partial 🙄😒

[anetap4545 in reply to Cwright170994]

Can it be avoided, what causes it the ms?

[Cwright170994 in reply to anetap4545]

Honestly, nobody has any clue as to what starts MS! There's a theory of low vitD, but how could that be, given there's people living closer to the poles where there's not a lot of sunlight 6 months of a year and there's about the same risk as people living closer go the equator?I know my mum developed hyperthyroidism in 2005/2006. That's an autoimmune condition itself! She had to get a parathyroidectomy, and is now treating it with thyroxine. So, there could be something to do with genes making you more likely to develop MS but again, there's no definite cause!

[MSFlea]

Hi! Just diagnosed this last Feb. I am currently on Kesimpta, started shortly after being diagnosed, I made sure to be tested for JCV as soon as I read about it, before starting Kesimpta. I have a low score, but my neurologist is checking it every 6 months, because he knows it is a concern of mine. I'm not sure if that helps, but I would definitely talk to your neurologist about your concerns and see what they say.

[anetap4545 in reply to MSFlea]

I did and she said not to worry about it. Think my show was 3. How kesimpta been for you. I'm so scared of side effects, so you have many lesions? I got 5 new ones in 2 months in scared

[MSFlea in reply to anetap4545]

They did not count my lesions, but I have a lot. When the neurologist showed me my MRI, I was really worried about how many I have, and one really big one, that is the one they are most worried about.

Side effects so far for me are flu like symptoms for 2-3 days. To me stopping getting more lesions is worth it, I just had another MRI, and no new ones! I take Benadryl and Tylenol, as directed by my neurologist, to make the side effects not as bad. I clear my schedule for the days following my injection. I also have one day where I lose at least half a night of sleep. Not sure why on that one, and I asked on Kesimpta FB group and nobody else said they had that side effect. A lot of people said that they have similar flu like side effects with it, and that they stopped around month 8, some said that didn't happen for them. So I'm hoping at month 8 or so the side effects will stop. The FB group is Kesimpta World MS Strong, if you want to join it and ask questions.

[Writter]

not, sorry, I have Rebif. your tratament is one of the best,

[kdali]

It was not a concern for this med. I was not on any other medications or had any condition that would have made it risky.

[Judenh]

I have high JCV (found when had bloodwork to start Kesimpta last Nov 2023, I was terrified but reassured since I had not been on another DMM starts with a Ty It would be fine. Here I am 10 months later doing just fine with it, only time I had side effects was after 1st injection (fever and such for a few hours) but nothing since! I get very mild head colds now & then but nothing big and they are gone in a day or two.

So, I know this post is 3 months old but I usually get any side effect a med can give and my bloodwork etc keeps looking good so…hope this helps

[anetap4545 in reply to Judenh]

Have you had an mri since, has k worked?

[Judenh]

I’ll be having my first since starting in about 3 months