Anonymous 09/04/15
Last reply 3 years ago
Treatment choices- tysabri or gilenya?

Hi everyone, I’d just like to see if anyone has been in the same situation as me, I had been on tysabri and changed to bg12, I’m now having a relapse and may have to come off bg12 (I haven’t had my MRI yet) but my only options are gilenya or tysabri (again!) I don’t know whether to try tysabri again and have gilenya as a backup?
By the way, I came off tysabri as I had a reaction but not an allergic reaction, as the infusion went in it began to burn my veins and it was very sore, so I’m quite wary of leaving this as my last choice but in also wary of trying it again at all!

Sorry to rant here, but I can’t always reach the ms nurses and neuro-typical people sometimes just don’t get it!

Add categories

Browse categories and add by clicking on them

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


tracyd
3 years ago

We have a few threads on here that may help with your choices 🙂

https://shift.ms/topic/tysabri-or-gilenya-3/

https://shift.ms/topic/changing-from-tysabri-to-gilenya/

https://shift.ms/topic/tysabri-verses-gileyna/

Unfortunately I’ve not been on either and have nothing more constructive to add 🙁 apologies xx


stumbler
3 years ago

@AnnaMag , has Lemtrada not been mentioned as a potential treatment?


Anonymous
3 years ago

Thanks @tracyd, that’s really helpful! I had brought up lemtrada but my neurologist said that it’s very intense and he wouldn’t recommend it if there are other treatment options! He would encourage me to back on tysabri but I’m wary, and I know I could try it, see what happens and then possibly change again but I think that would be a lot of to-ing and fro-ing, especially as I’m coming up to exam time 🙁


eikichi
3 years ago

Its so hard to give fellow patients advice on these issues because this decease has so many different ways of expressing itself.

Personally i’ve switched from rebiff due to side effects and skin soreness to no medication and eventually after a set back i started to use gilenya.
For me it was a relief , no needles and no side effects. just 1 pil everyday , like taking a vitamine on a daily basis.
I’m being stable for almost 2 years now. Another sidenote by taking a pil i felt it was easier to cope with myself and the diagnosis.
It’s not as confronting as needing to go to the hospital or taking shots on yourself.

hope this helps, all the best


Anonymous
3 years ago

Thanks @Randy82, I know what you mean, needles etc can be really invasive 🙁 and the more information I get the better! I don’t want to just dive in to a treatment without learning some real-life experiences as the literature can’t tell you what it’s like to live with a treatment! I’m glad to hear you’ve been stable for so long as well 🙂


tracyd
3 years ago

@AnnaMag

My neuro said something similar to me about Lemtrada, she also agreed my MS is so very aggressive that knowing me she should not be surprised that I was adamant I wanted it.

Everyone’s choice is personal it depends on your life, family and circumstances as well as the degree of MS intrusion into life.

I’m sitting in the wheelchair transport room at Linate airport in Milan. I flew here yesterday perfectly mobile and today my left leg is collapsing again and I can barely stay upright. My method of dealing with MS is to attack it as brutally and mercilessly as its attacking me. So my neuro gave in 🙂

Make sure you’re as informed as you can be understand the pro’s and con’s of each treatment. Do a for and against for each and then make your choice with clear knowledge of what you’re signing up for

Good luck xx


Anonymous
3 years ago

I like your attitude @tracyd 🙂 have you had the lemtrada yet? If so, do you think it was worth the struggle/side effects etc? I hadn’t even considered lemtrada to be honest but now I’m thinking it may be a possibility- why don’t they just have some kind of aptitude test to show which treatment suits best? Life would be so much simpler >:(

I hope you feel better soon and that this is just a blip!


tracyd
3 years ago

@AnnaMag

My treatment is scheduled for May 18th, I’m going to keep an online record of everything as it happens published on ‘tinterwebs for everyone to see for as long as I can, I think knowledge is key for everyone with all of the DMD’s available. The medical fact sheets are great, but people’s stories I think help more with the awareness of how it’s going to make you feel.

Got up this morning and the leg is functioning again no collapsing today and who know what tomorrow will bring 🙂 The sun is shining, it’s been a beautiful day so far working from home on the sofa with the dogs for company. All things considered I’m a very lucky girl and worse things happen at sea 🙂

Good luck
Tracy xx


tabbycat
3 years ago

Gilenya has been good for me and after two years on it, my last MRI showed no new leisons . Everyone is different but I thought it was good to hear some positive news about one or the other. Good luck with whatever you choose.


Anonymous
3 years ago

That’s a great idea @tracyd and I’m glad to hear you’re better! I hope everything goes well 🙂
And thanks @tabbycat , its good to hear that gilenya is good for long-term use and that it’s working so well for you, it really is great to get people’s experiences- I feel like I’m getting more honest reviews, clinical trials obviously have to tell the truth but they only really mention statistics and not feelings!

Post Comment

You must be logged in to reply to this topic.