Last reply 1 week ago
Tysabri or Mavenclad

I’ve had to come off Gilenya because it caused me to have deranged LFTs and since being off it I’ve had a a new lesion form on my spine. I just don’t know whether to start Tysabri or Mavenclad. I don’t know if I want to have to get infusions every month but I could go straight back to work once I start it but if I go on the Mavenclad I’ll only have to take tablets for 2 weeks of the first 2/4 years but I would have to take 8 weeks off work. It’s just so hard trying to figure it out. Your experiences would be greatly appreciated.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


pauley
2 months ago

Hi @ciara
I’m starting Mavenclad on Monday so I’ll be happy to let you know how it goes..up2 now I was worried that I would get stuck in the lockdown black hole again and end up having to wait until the virus had settled..now I have the treatment ready to start on Monday I’m shitting bricks.. lol

If this doesn’t work out I know that I will have other options so try to stay positive
Stay safe
Paule


ciara_fisher
2 months ago

@pauley that would be great if you could let me know. Do you have to cocoon now? My consultant says I’ll have to cocoon for 8 weeks but I don’t know if that’s just because I work in a hospital. Thanks so much!!


pauley
2 months ago

[email protected]

I wasn’t told to shield/cocoon or self isolate but I believe I may need to depending how I feel after taking…I’m quiet happy to keep a low profile for the 5 days I’m taking it and see how I feel after that
I have been self isolating since end of March as I work in a nursing home…
Some of the more common issues seem to be shingles and a greater risk of infection..I will be taking care.
My pre treatment checks were all stable so I’m hopeful


pauley
2 months ago

@ciara
I wasn’t given any choices of treatments..my neurologist just prescribed it..
My family planning days are well and truly over so the fact you can’t plan a family for up2 18 months didn’t bother me…not sure which treatments are safe whilst family planning
Worth considering before starting


ciara_fisher
2 months ago

I think Mavenclad is great for family planning because after 18montha your covered and can start a family in the two and half year


chezy17
2 months ago

I was given a shingles jab to stop me from getting shingles because I’ve had chicken pox a few times and always catch a cold when I’m around it. I’ve been fine on Mavenclad but I’ve had raised lymph nodes on and off the last few months so not sure if it’s related to the meds or not. I guess I’ll find out when my bloods come back. I know lymph nodes can raise with other auto immune diseases so perhaps it’s just my MS playing up with the stress of what’s going on 🤷🏻‍♀️. You will be fine on the Mavenclad ☺️.


ciara_fisher
2 months ago

Thanks @chezy17. Here’s hoping it all goes well


stumbler
2 months ago

@ciara_fisher , there’s some interesting comments regarding Mavenclad in this document:-

https://www.msard-journal.com/article/S2211-0348(20)30149-8/fulltext

It’s a long document. The references to Mavenclad are quarter to a third of the way down. I’d search the document for the word. 😉


pauley
2 months ago

Hi @ciara,

Chapter 1…Day 1

Took 1st Mavenclad dose this morning.
Still here…


ciara_fisher
3 weeks ago

@pauley how’s the Mavenclad going? How were your bloods?


pauley
3 weeks ago

Hi @ciara,

I just finished my last of the treatments for this year this morning.
My bloods are booked in for 20th September so won’t know until soon after if white blood counts are okay
Had no real problems thankfully…just extra fatigue by afternoon
How are you doing
Happy Friday everyone


ciara_fisher
1 week ago

I started mine on Monday and have a small cold now but nothing too serious. How were your bloods Paul? Hope they were ok. I hope mine are ok come the end of my second treatment cause they have to be at a good level for me to go back to work.

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.