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Tysabri as first line treatment

Hi Everyone

I have recently been diagnosed with MS following an INO episode in my left eye. This then healed after about 6 weeks.

About 3 months later I got Optic Neuritis in my right eye.

6 weeks on and it is still there, but getting slightly better.

I have been offered Tysabri as a treatment option which obviously scares the hell out of me!

I have never taken any DMDs before and the whole thing seems like a drastic course of action to me…

Just wondering if anyone else has been in a similar position?

Does anyone else think Tysabri is a bit risky given the relatively mild symptoms I have had?

hiya

ms is a sneaky so and so!

i was never on injections-straight to tysabri. my neuro told me it was all in my head/imagination for 2 years!!! as a result 3 years ago i had a huge relapse from which i have never recovered. only starting tysabri after this life changing relapse. (different neuro who was left to pick up the pieces) so i went from driving, bringing up 4 kids on own etc etc to unable to communicate properly, doubly incontinent, totally right side weakness and permanent loss of sight in left and carers to help with the basics.

so i understand you thinking your symptoms are mild , but…

i know the side effects of tysabri make horrendous reading but if somebody/anybody had believed in me initially then life would so different now. oh-i have been through every emotion possible regarding this but i have to live with it daily, the neuro who didnt believe me doesnt care so any anger only hurts me! so accept and deal with as best as i can is all i can do.

sounds like u have a fab on-the-ball neuro!

good luck with whatever u decide!

ellie

Hi Ellie

Wow - I can’t even begin to imagine what you have been through…

Sorry to hear about not being believed - I have started noticing this happening with people sometimes but don’t know if I’m just being paranoid - Probably a bit of both?

Your story really puts things into perspective for me - thank you.

Yes, I am very lucky to have such a good neuro

You know what, I think that has made up my mind - Thanks a million :slight_smile:

P.S. You have done amazingly well bringing up 4 kids whilst coping with all that - Take my hat off to you :slight_smile:

hiya unpronouncable name

put yer hat back on…

hey we all have a story. you never know how strong u r… if life throws lemons at u then make lemonade

granny ellie!

Hi Ellie

​Wise words :slight_smile:

Sorry, the name’s Max!

How are you finding the Tysabri so far?

I am going to have some blood tests this afternoon (I think liver and kidney function + JC virus test).

I am thinking the JC result could be the deciding factor…

Did you have the JC test?

Cheers,

Max

Hi Max. I’m currently taking Tysabri, nearly a year now and no relapses, having had 3 relapses in 6 months last year and approx 7 in 2 years. Before that was unaware anything very wrong but had strange episodes, something obviously changed and relapses got more frequent and worse each time. You never know when it’s going to strike and bite you on the ar$3. To be offered this drug they must think you will benefit from it. PML, in the first 2 years of taking the drug the risks are negligible, apparently, and they do keep an eye on you. If you don’t already know about it check out the facebook page UK Tysabri users (Natalizumab). It is a closed group and you will be able to join even if you are only thinking about it, you may get more answers on there. Cherry x

hiya max

yes re jcv-i am negative tho saw my neuro last week and he tells me that 2 folk who were also negative have died in italy recently so the positive/negative thing is maybe less important these days? for me i decided even before being tested that i had to give tysabri a go (no matter if i was + or -) but my reason for that was the huge life changing attack he (neuro) was simply picking up the pieces after what i can only call a huge f up after having no treatment from previous neuro!

my current neuro is very on the ball and doesnt treat me like an idiot-hes foreign and very straight talking which i appreciate!) last week we had a talk re dying naturally or because of drugs he was prescribing for me-am guessing that was first time of that convo! i was a staff nurse for 10 years (tho its so different being on other side of fence!)

it took me a long time to find someone other than my gp who understood me!

i wish someone else would reply to u as well because over the years i am very aware that i dont deal with my ms like the majority. i am not saying that means that i am right either but this is the correct way for me

the key to this ms malarkey is keeping the mind strong and focussed no matter how your body is letting you down.

(i type in lowercase cos can only use one finger and see with one eye so ignore any mistakes!)

hope you get results/answers you would like this afternoon.

ellie

oh i forgot to say been taking it over 2 years now and no obvious relapses just a couple of niggles. i had 11 relapses in the first 2 years of no treatment.

ah, cherrylips has repled to you too-good!

e

Hi again Max. Forgot to mention I tested strongly positive for the JC Virus. A lot of people on the Facebook site also are and have been on Tysabri 3/4/5/6 &in at least one case 7 years. It is worth going on it sooner rather than waiting till its too late. I never imagined this time last year I would be as well as I am now, my body has recovered (to about 98%) thanks to no relapses. Cherry x

Hi Cherry

Thanks for your reply.

I will definitely check out that Facebook page.

That must be pretty scary being JC positive but good to know that they keep a close eye on it. Is it a test every 6 months?

I have just got back from my JC test so for me its just a waiting game now before the decision…

Apparently they have to send it off to Norway to be tested!

Great to hear that you are doing so well on the treatment :slight_smile:

Max

Hi max. Yes they do the test every 6 months, every infusion you have a q&a list asked by the nurse too. If there is anything suspect I assume they report it, so far so good though. Good luck. Cherry x

Hi Ellie

That sounds like a heavy subject to discuss… Must have been a tough one?

These last few months have been tough - coming to terms with the diagnosis and then suddenly having to decide about Tysabri - My mind has been all over the place - but yes, I completely agree that keeping the mind strong and focused is the most important coping mechanism. I have noticed my cognitive functioning not being at 100% which is one of the scariest things for me…

Jesus, typing with one finger must be a major pain!

One reassuring thing I learned this afternoon was that they monitor your “levels” of JC virus and once you breach a certain threshold you are taken off the Tysabri. I had previously thought it was a black and white case of:

JC Virus = Yes/No

PML = Yes/No

Its good to know that they monitor levels.

These 2 cases in Italy, were these deaths attributed to PML (i.e. PML but no JC virus)?

Thanks,

Max

Hi Cherry

That’s good to hear.

Good luck to you too :slight_smile:

Max

Thanks Max. Hope it works out ok for you. Are you the Max who joined today? I use my real name on there, reasons why I don’t on here (don’t ask). Cherry x

Hi Cherry

Thanks, yes that’s me :slight_smile:

Feeling a bit more positive about the whole thing I think…

Thanks for the link!

Max

No problem. Cherry

Hello again Cherry and Ellie

Hope you are both doing as ok as is possible.

My JC test came back as positive and my neuro now thinks that I should consider Tecfidera…

Don’t know what to think now! :confused:

My MS nurse said to give myself until next Monday to make up my mind…

Apparently I can still have the Tysabri if I want.

Decisions!

Any advice/options/thoughts would be greatly valued - I’m sure that you have both been in similar positions?

Thanks,

Max

Hi Max, sorry to hear you are jc+, did they tell you how much (you can be positive up to 1.5 & still be ok)? Even higher you can still take tysabri for up to 2 years. I think there has been a pml incident on tecfidera also. It will be your choice, have the possible 2 episodes you mentioned been the only 2? Have did you have any previous? I felt had no choice because of the amount of relapses I had over 2 years (I don’t know how much positive I am, just strongly positive, so think I am well over 1.5). There are loads of threads on he forum about tecfidera, if you read them it might help towards a decision. Good luck with the decision making. Cherry xx

Hi Cherry

No they didn’t say how high the levels were but that’s a good point - I will see if I can find out tomorrrow. Thanks for pointing this out :slight_smile:

Yes I have just read about the PML cases (2 according to the MS Trust) on Tecfidera… Do you know if they monitor JC levels as they do for Tysabri? If not I am more inclined to go for Tysabri I think…

For me, I had an incident of right hand weakness in 2010 - They did an MRI scan and found lesions consistent with MS. After the hand resolved they said to try and forget about it and was diagnosed as a CIS.

Then I had the two relapses this summer and was Dx with MS.

I think the DMD options have been triggered because the last 2 relapses were so close together?

Subsequently I have recalled other “strange” sensory episodes and an incident of right foot weakness back in 2005, but I did not seek medical attention and so these episodes went undiagnosed…

Oh yes I also have some numbness on my face as well and apparently my ON is not likely to make a full recovery given the amount of time I have had it for!

Sorry to hear about you being strongly JC positive.

Thanks again for your help :slight_smile: