Last reply 1 week ago
Tecfidera not working

Hi everyone.
After getting told everytime I ring my ms nurse that I am not having a relapse, I have just found out that infact I was having a relapse, which means tecfidera is not working and I need to change medication. They have given me the choice of gilenya or tysabri. They have chosen these as they are avaiable to take now without having to wait. I am annoyed as they have nown since august and they have only just told me!! I have done lots of research into both medications and others as I do not want to go back to taking a tablet everyday. Any thoughts would be appreciated.
Coral x

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sugerez sa mergi pe tysabri… eu îl fac de aproape 10 mani și este ok


stumbler
1 week ago

@coralellis , the only available way to prove this relapse activity, or not, is another MRI scan.

Other options available to you would seem to be Ocrevus, Lemtrada and Mavenclad. The first two are infusion and Mavenclad, oral. You should look into these options and ask why they haven’t been offered to you.

The following would be useful to you :-

https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf


coralellis
1 week ago

Ocrevus and lemtrada isnt avaiable until january in our region. Dont know why mevanclad wasnt offered. They have said I can have others if I am willing to wait but they dont want me to wait basically.


stumbler
1 week ago

@coralellis , on that basis, then you have to decide between the two treatments being offered. Tysabri, on monthly infusions, or Gilenya, on daily tablets…….

However, it is only 6 weeks to January…….


coralellis
1 week ago

Thank you


anon_ymous
1 week ago

@coralellis not too long ago the european medicine agency has updated their restriction recommendation on lemtrada. check it out if you are not aware:
https://www.ema.europa.eu/en/medicines/human/referrals/lemtrada


coralellis
1 week ago

I have sat down with ms nurse and I have decided to take ocrevus. Will find out next week if/when I can start it.


dominics
1 week ago

If you can bear it then I’d wait until Ocrelizumab or similar was available in 6 weeks. Nothing to stop them choosing you to have it and doing the preliminary work-ups (blood tests etc)( to check that you are indeed suitable.

Is it possible to make your intentions known and have them act on them now in this way?


dominics
1 week ago

Just seen that you are in Northants. Apologies.

Unless your bloodwork and immunisation status was to prevent you from having Ocrelizumab then there should be very few roadblocks.

I take it and am in Oxon. Search for Ocrelizumab or Ocrevus here as I wrote a pretty detailed post regarding what happened in the run up to the first dose (Jan 19)


dominics
1 week ago

Just got off phone to my MS Nurse in Oxford. If you are in the Southern part of Northants then Oxford (The John Radcliffe) is doing the infusions for Northampton AND Swindon as well as us Oxonians.

They were saying that it wasn’t the drug causing problems but the vast amount of administrative burden that has been created. That and the ever-evolving safety protocols regarding necessary vaccinations and the like.

Keep pressing. The squeaky wheel gets the oil – sadly.


coralellis
1 week ago

Apparently one of the ms nurses is going for a meeting at oxford on friday to discuss running ocrevus from northampton and is hoping to start in january. Been told to ring them monday to find out more.
I have read what you wrote about your treatment and I found it very helpful, thank you.

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