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Asked to go on Tecifdera - told no :-(

i wrote to my consultant to ask could i changed to Tecifdera as my injections sites hurt and that my symptoms after injecting were horrible.

was nice of consultant to reply but he said no a rebif was working for me and there was no supplier in the area and perhaps to ask again when i had my next check up in August.

hi

i don’t buy that there is no supplier in the area.

keep on asking to change.

have you got an ms nurse?

he/she may be able to help.

carole x

Which area do you live in?

no my nurse is on maternity leave with no one to cover her.

Hmm, Is your consultant an MS neurologist? If your consultant is a general neurologist or speciality that is not MS you can request to be seen by an MS neurologist. NICE guidelines for treating MS explain this. Have you been diagnosed with definite MS or CIS? I know some injectables are offered to those with CIS/ Possible MS diagnosis.

If only a single injection site is causing the slightest concern / pain / anxiety / anything negative, then Rebif is NOT working and you deserve a change.

As for ‘no suppliers in the area’ excuse; well if the outer Hebrides can receive Royal Mail or freaking FedEx then i am sure you can gain delivery of occasional Tecfidera packages.

I do not know who you wrote to, but i sympathise with you for having to deal with such a work shy, apathetic twat.

I remember speaking to a general neurologist last year. I was on no DMT at the time, he said he could only prescribe me an injectable and if I wanted to go on a tablet or any other DMT (Lemtrada) then I need to see an MS neurologist. It was good he was honest with me. So I pushed to see the MS neurologist.

i live in London donnawolf seen at Queen Square

who do i push to see a MS Neurologist? is it Queen’s Square or can i go through my GP?

When I was on Tecfidera, I received the medication via a courier, so it’s possible to get it delivered. And i live in teesside, if you live in London then I don’t understand why he would say that to you.

contact both queen’s square and your gp.

don’t give up.

carole x

Yes agree with Carole, contact Queens Square by phone and ask for the name of the MS neurologist/s at Queens Square. See your GP and ask them to write a letter requesting you are seen by one of the MS neurologists. Keep pushing x

thank you all for your advice