Restarting DMDs after break

Everyday living
1

Hiya

Just got back from an appt with my neuro as I have been deteriorating since stopping Rebif 3 years ago we have decided to restart it.

I have progressed to Secondary Progressive and I wondered how many others with Secondary Progressive are using Rebif.

Hope you are all doing as well as can be.

Shazzie xx

1 Like
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I was under the impression there was nothing out there to treat SPMS but maybe because you have used this before they are trying it again. Sorry I can’t offer any informative comments, hopefully someone will be using this and share their experience.

Good luck hope it helps

Janx

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Thanks Jan

That’s what I thought. He said that if we progress to Secondary Progressive then relapses can still happen as it does in RRMS and the Rebif would help with this.

I’ll let you know how it goes.

Thanks for your reply. I really appreciate it.

Take care.

Shazzie xx

5

Thanks Val.

I really apperciate your reply.

He did offer Ex something or other can’t remember but he said I would have to mix it up so I went for the Rebif again.

Not sure if I should have gone for the Ex???

Shazzie xx

7

Thanks Val. I get it now (I think).

Thanks for you help.

xx

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I wasn’t offered any oral meds.

I’ve got an appt with my MS Nurse to discuss so I might bring that up with her.

Thanks for your reply.

Shazzie xx

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Good luck Shazzie.

Sonia x

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I don’t have a diagnosis of sp, only RR wich was my original diagnosis 18+ years ago. However, I wouldn’t be surprised if I was sp, neuro hinted as much last time I saw him, which was about 10 years ago. All he said was that he would be surprised if the betaferon I was on would still be helping but I could stay on it if I wanted. I was keen to stay on it so I did and am still on it. I have taken it for the 18 years I have been diagnosed. Because I’m keen to stay on the betaferon, I try not to enter into much discussion about it with the nurse when I see her.

Btw, betaferon was reamed extravia a few years ago.

Cheryl:-)

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Hi Shazzie!

can i ask you why you came off rebif 3 years ago?

If you live in Scotland then bg12(tecfidera) is available to you now but if you are live in England then it wont be available just yet.

Tecfidera is supposed to be more effective than the injectables. Its the new oral drug thats expected to start leading the market in ms treatment.

Teresa.x

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Thanks Sonia, Teresa and Chery;/

I’ve started another thread now but will let you know how I get on. Be interesting to see how the injections work on SPMS.

Bit of a postcode lottery by the sounds of it.

Shazzie xx