dmarucci 15/02/17
Last reply 1 year ago
Lemtrada?

Hi I don’t remember using shiftms previously,it’s been years so I will say this is my first post! I have my yearly appointment with my neurologist on March 16th
So I’m currently on gilenya and have slowly declined. My ms is a mystery. I mean I have never realised a relapse and I feel I just get progressively worse. I struggle in many areas such as balance, tremors and vision issues. I’m wondering if my neurologist is going to suggest a new treatment.
I really want to try something different and was wondering if lemtrada is the way to go now?

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kattyazz
1 year ago

So I was/am on tec. But had a scan in Jan and dr surprised me last week that I need to change to something harder that tec – (he advised lemtrada). Sort of a shock. I was feeling ok when I went in – in hindsight I was ignoring relapses thinking they would go away (had flu for most of Christmas so blamed that). Anyway, just think you need to speak with your doctor and figure out where you wanna go. Go in with a plan and questions if you can, reasons why you want it… xx


marcyg921
1 year ago

Lemtrada does seem to be the one of the more common treatment but it is a strong treatment and it is a big commitment, I’m on Lemtrada myself but I’ll never be able to answer on if you should go on this treatment, only you and your Doctor can make this choice but keep in mind from what I’ve gathered Doctors usually either prefer to give Lemtrada as a last resort, or to newly diagnosed patients (like myself) who’ve never had treatment before. If you don’t feel like your treatment and wanna try something new, go for it and speak to your Doctor, but unfortunately I can’t swear that Lemtrada is the best drug as I don’t have anything to compare it with but people have had good results with it.


tracyd
1 year ago

@dmarucci
It’s certainly something to consider, however I would suggest that rather than ‘wait to be offered’ any change in treatment that you do your research on all of htem and then just go in there and ask for it and be prepared to fight your case for it.
Waiting to be offered something and then not being offered something that we didn’t ask for seems to be a constant gripe within the MS communities not just in the UK but around the world.


dmarucci
1 year ago

I feel totally done with Gilenya, I am just getting worse slowly. I need to do research yes and I will be ready to fight my cause. What I meant a little by my MS is a mystery is that I was diagnosed with RRMS but dont feel like I have had a relapse. Just seem to be gettting progressively worse. My neuroligist didnt care when I told him and just said that means you haven’t had a relapse. But what if I have been Mis-diagnosed which i believe I have


Anonymous
1 year ago

I would hold off the fears of it being anything worse till you have more information,
personally I too have RRMS & I feel it is slowly gettig worse without any obvious attacks or lesions
but stress & many other factors do exsasibate the symptoms so look a little wider & see if there’s any changes you can make to help yourself, while you collect more data.


stumbler
1 year ago

@dmarucci , the relapses within RRMS do not need to come thick and fast. There may well be years between relapses, especially if your Disease Modifying Treatment (DMT) is working well.

By raising the issue of no relapses, you are asking your Neuro to reconsider your diagnosis to one of the Progressive variants of MS. This could be considered unwise as there are presently no treatments for Primary Progressive (PPMS) or Secondary Progressive (SPMS) MS!


arknat
1 year ago

I thought this will be useful for a lot of us considering moving to Lemtrada from Gilenya.

Switching From Gilenya to Lemtrada Seen to Trigger Disease Activity in Some MS Patients

I would think some waiting for atleast 3 months will help.


reds44
1 year ago

Just because you have no lesions does not mean your not having a relapse. My MRI was clear and my legs kept getting worse. Just finished my 2nd round of Lemtrada WBC already falling, so we shall see I will request an MRI in October. Good luck to you

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