Last reply 7 months ago
Feeling disappointed

Hey just got my blood test result for the jcv virus n am too high off a risk for tysabri. Absolutely gutted been an emotional wreck as this treatment would off fit in with my life as can be done at a local hosp. Meeting my ms nurse this afternoon to go over other treatment I know Lemtrada is one not keen staying in hosp for 5 days n nearly cry thinking about it as I have kids to think about just seems my life is abit of a mess the now

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cee79
7 months ago

Please don’t be disappointed 😔 sh** happens. I too was put on tysabri even though I was JC virus positive with a view of keeping an eye on the levels. I had prior to this been on 2 other DMD, avonex and finglomod 🙁 my JC v levels crept up and the MRI showed new lesions with active inflammation in the brain.
I was given 2 options- lemtrada or to consider stem cell, upon reading about them both and freaking out, I opted for the lesser of 2evils.
The thing is that I guess u have to sacrifice to gain, this is the rest of your life you are looking at, to be functional to be able to look after yourself and your loved ones.
Lemtrada stories vary and isn’t the same for everyone, but yes, u will have to be in hospital for the five days of treatment and I think that is fair and reasonable given the type of medication that is being pumped through your system. Take your time about it, read up and talk to friend and family members too. You will find the support u need if you choose to have the treatment and remember, we are all hear to listen and support you x


zarah
7 months ago

Hey thanks I know it seems silly worrying over staying in hosp for the bigger picture will be better just last time I was in hosp I hated it could t sleep or anything n am scared it will intensify how my symptoms are. My positive came back to high to even consider being on tysabri for even a year so will wait n see what my nurse recommends might just need to stop feeling sorry for my self n bite the bullet xxx


stumbler
7 months ago

@zarah , Cladribine (Mavenclad) could be an alternative option for you.

It hasn’t quite been approved yet, but is being provided “off-label” in London. There might be some “wiggle room” here for you.


studentandms
7 months ago

I have just finished R1 of lemtrada on Friday. I am in the UK and went in as a day patient everyday and was home by 5pm. Lemtrada was such an anti climax and apart from a headache and tiredness I didn’t have many other symptoms. I am now a week after it and feel back to normal. I’m so pleased that I chose it. It might not be the right thing for you but just wanted to share that it’s not the horrifc treatment it looks like on paper. All the best


zarah
7 months ago

Hey everyone just back from the ms nurse am going to with Lemtrada treatment there’s abit a 3 month waiting period where I am so going to get the ball rolling for before treatment tests. They can treat me as an out patient if am willing to do the travel everyday it’s about 20 odd mile away just whenever any one mentions about me staying in hosp I start getting upset n become a emotional mess xxx


cee79
7 months ago

@zarah, that’s good that u can have it as an outpatient, hospitals are a horrible place to be, not the best environment for rest and recuperation. Good luck with it all- remember- problem shared, problem halved x x

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