Last reply 11 months ago
Neuro Appointment

Good after.noon everyone

Tomorrow I’ll be meetingmy neurologist
If I couldn’t find an escape from having dmt
I’ll begin one
Im not even 1% disabled
Stressed low weight and low blood pressure
Feelpainin my knees and legs dloghtly bit

What treatment wouldyku advice me to take and not ruin my qualityand comfort in life
They said since i refuce rebef i must take gelineya or tefideta
Is there a better safer option

cheers

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stumbler
11 months ago

@nutshell88 , both Tecfidera and Gilenya are well tolerated oral Disease Modifying Therapies (DMTs).


vixen
11 months ago

Oh @nutshell, you know this is one thing you’re gonna have to choose for yourself. Although, your neuro is the one who knows you and your body best. I mean, you have managed very well without a DMD so far. It’s so tough, isn’t it? I take Tecfidera but I will never really know if I am better, or worse off for it. I guess I must just trust the neuro. Good luck tomorrow, sending you love x


londonlad
11 months ago

@nutshell88

Best of luck for tomorrow 👍

the good news is there are plenty of options of medications to choose from

Be honest and open with your neuro of your concerns, goals, and lifestyle factors

I’m sure together you can find a suitable medication that can help you, but also match your needs.

I have to be honest that I’m happy you are making this step.

Let us know how it goes 😊


californiadreamin
11 months ago

@nutshell88

We considered this choice a long time for my wife. Here are some things you might consider. Even though there arent head to head comparisons it seems like Gilenya is proably slightly more effective. Gilenya has some initial heart monitoring required because of how it impacts your heart short term.

The consequences of skipping Gilenya are much more severe then skipping Tecfidera. If you are the kind of person that might not be dligent in taking your medicine properly every day without fail, consider Tec.

Tecfidera has more GI and flashing issues, but most of them pass for most people in less then 8 weeks.

Gilenya has risk when you stop. The reason is that Gilenya works by blocking certain cells from travelling. When you stop Gilenya, they are released and they can cause a much more severe relapse in about 10% of people.

So if Tecfidera doesnt work, its easy to go to Gilenya. If Gilenya doesnt work, its not obvious you would want to go to Tefidera.

Tecfidera leaves your body in about 24 hours (though blood counts can take much longer to recover) so if there is any chance you are going to have kids etc, Tecfidera might be a better choice.

Lastly for us the main thing came down to the fact that the main compound in Tecfidera was used for many years in Germany and has shown a very good safety profile. While Gilenya is likely as safe, since all these drugs are new we went with what we thought was the safest.

My wife had several really bad weeks with pain worse the child birth almost with Tecfidera. It was horrible. We stopped taking it for a little bit and started over (feel free to search early posts of mine). However, today, she cant even tell she is taking it.

So do think about what you will do next if it doesnt work. Most doctors are thinking of just getting you started on something right now. If it works great, if not, they will try something else. Its important to know what that next thing might be. For us it was Ocervus. It was a couple months from being approved when my wife was diagnosed. If Tecfidera didnt stop her relapses thats what we would go to next.


mermaidia11
11 months ago

@nutshellChick you’ve had a bit of a rubbish time of late havnt you?

I did smile at your late night trip to the supermarket and havin your fave meal, can’t remember the name of now, but I googled it – sounds delicious! Good on you girl.

I lived for a short time in Abu Dhabi in UAE – top place, and Carter’s was the best club Eva from what I remember (it was 20 years ago – I was diagnosed by then, so lived it large)

It sounds like you are experiencing some troublesome new things which are coming between you, your sleep and your peace. If only there was a pill to take it all away right?

You asked for advice here, but the best person to advise you is your neurologist.

You have to ask yourself what are your expectations of a DMD?

Are you thinking they would alleviate symptoms now?

Are you looking to stop any more damage in the future ?

What do your parents think? They have been good with you and seem invested in you and your treatment. So what do they think ?

If you go in there desperate for one, then he will surely give you one

But if you go in there open minded and tooled up with knowledge of these drugs and some idea of what you are hoping to achieve, it might promote a frank discussion about the various short and long term options and outcomes.

You are a clever gal, so don’t be to keen to crack a nut with a sledgehammer just yet.

There may be things they can offfer or suggest in the short term which will allievate and calm things down, and you can think about the long term ramifications in the meantime.

You will have a lot to think about, especially if you ask the right questions.

Good luck sweet nutshell, let us know how you get on.

And treat yourself like the Arabian princess you are in the meantime

Love, lite and angelic delight to you 😇🌹👍 this day


nutshell88
11 months ago

@vixen @stumbler
You’re right. I must act like an adult and fix what MS ruined.
And be defender for my safety this way against the other me haha.

@londonlad
Thank you so much for your nice wisheafter all these years its time to make a jump. Not into the mud i hope lol.

@californiadreamin
Gilenya’s been chosen woohoo😂
Lets hope its the right choice
I live with my family hopefully they remind me if i forgot they gave me all aorts of warning here at the hospital
I’ll try to be causious the best i can.

@mermaidia11/
Pardon i dont know if you like it or not but i think ur tongue is made of 🍯 😉
Altho ive never had a voice contact with u but your reply shows what a sweet person you are
And yes i’ve chosen gilenyalets hope its safe and sound 😂 gotta change my profile infos

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