Last reply 3 months ago
Need advice on changing treatment

hi I’m currently on tysabri natiluzinab de past 3 yrs my JC virus test in the past has been zero negative awaiting result of this jc test this time my neuro wants me too consider coming off tysabri and going on mavenclad cladribine or lemtrada .
I need advice as tysabri has giving me over 3 yrs were I’ve had no relapses or worsening of ms ,I’m finding it very difficult too make a decision can anybody out there give advice

Kind regards Jess

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rogersouthall
3 months ago

Jess, whilst on Tecfidera I contracted the JC virus, currently only taking CBD oil but everyone is different and with consultation there are many alternatives.
http://www.wholesorts.com is my monthly blog, have a read and any time you want to chat just shout, good luck


jess555
3 months ago

tnks for reaching out your advice is taking into consideration ,, I’m very unsure if they took me off it completely I’m scared of my ms progressing and I was told by my neuro that been on nothing isn’t an option . tnks v.much again


stumbler
3 months ago

@jess555 , I think you should be asking your Neuro why they want you to consider this change.

Tysabri does have an increased risk of Progressive multifocal leukoencephalopathy (PML), the long you take it. But, your JCV status would have to become positive before the risk becomes a possibility.

Would you have any aspirations of motherhood that may need to be taken into consideration?


jess555
3 months ago

@stumbler I’m well are of pml risk factor I kno what it is I get Mc jc testevery 6 months n mri”s an he did say that even dow I’m in a lower risk category becoz I’m jc negative I can still contract pml but iv not relapsed in over 3 years ,,previous treatments in my past failed 5 to be exact so tysabri has been de best one for me so far I’m just not sure why my neuro wants to change me now when I’m doing so well mri has been stable due a pml surveillance mri now in a fw wks . An here’s hoping it still is stable an no changes 🤞🏻🤞🏻


jess555
3 months ago

aware* tat meant too be


smack
3 months ago

Why does nuero want change? That is the main point. Ask, you have to advocate for yourself.


arya
3 months ago

Totally agree with @smack and @stumbler


dominics
3 months ago

@jes555 This is the 6 million dollar question. People can share their experiences – as they relate to them – but it is v dangerous to try and overlay that to you.

We are all so different and react differently to drugs that your question is best answered by an expert, more than one preferably.

What your lifestyle is like, what your attitude is to different risks, what your goals are etc. These all play into what is the most suitable drug for you. The doctor(s) and nurse(s) ought to be leading you in this type of conversation.

Best of luck.


brando
3 months ago

It’s what works best for you, I have been on tysabri for 11-12 years I’ve forgotten how long I have been using this drug.

my previous drug didn’t work so well for me but I’m gonna need a pretty good reason also being JCV negative to not be using this drug any more. In my mind it’s what gave me a normal life, I dont want to risk losing that just because there are new drugs out there.

At the end of the day though it’s what suits you best tysabri worked very well for me. Where beta feron didn’t, just find the drug that suits you best.

all the best

Brando.


jess555
3 months ago

@brando tnks for reaching out ! yeah exactly I’m in the same vote before tysabri 5 treatments went against me buh since I went on tysabri 3 yrs ago I’ve had no ms relapses no worsening of my me and my jc has been zero negative for pml I get regular jc & mri checks . My neuro just advised me too change from it becoz how long I’m o. It but if my jc is negative an Iv no symptoms or worsening I can’t see why I’d need to change it .wow 12 yrs tats a long time . For me it gave me back a gd quality of life & normality & independence its helped me so much kinda afraid now to change now Incase it set me back .


mamawals
3 months ago

Have you considered extended dosing? I surprised he wants to take you off it since you’re JCV negative. However, even if you’re JCV positive extended dosing seems to significantly reduce PML risk.


jess555
3 months ago

&mamawals I do t understand what u mean ? I get my treatment every 5 wks ..it was every 4 wks but due too bad side effects it was pushed out an extra wk am de side effects aren’t as bad now tnk god it takes me arnd a wk to come stand after I get treatment do be great then like I get a new lease ov life an then I do feel I need it bfore I’m due to have nxt one .

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