Hi everyone, has anyone here being prescribed teciferdia( think that’s how it’s spelt) for progressive ms. I have appt. with ms nurse tomorrow to discuss my diagnosis and starting on this drug. My nuero did mention it to me in august but just after telling me my ms was progressive so I did not ask the right questions.
From the info I can find online this drug is for rrms only, he did mention it is usually used in rrms but said something about there being a chance it can help progressive. If that is true I’m all for giving it a go, what I do not want is too be used as a guinnea pig and end up with a load of side effects and no improvement.
Hi Agenda, have you discussed your concerns with your consultant? Ask him what makes him believe it may work? Hope it works for you yes please do let us know. I wouldn’t be too concerned because we never know what reaction we may have to any drug we are given until we take them.
Hi Pauline, yes I spoke to him it is being trailed in the hospital I attend at the moment so I am getting it on a named patient basis which basically means for free. Tecfidera is not on the approved list in Ireland due to the cost. My nuero said my brain scans are showing that I have progressive ms but he has found that some people with progressive are being helped with this drug. I am going to try it and see what happens. My ms nurse is meant to explain it in more detail but she is very hard to get hold of and even when you do about as much use as a chocolate teapot.
i am starting next week on the drug and back to see nuero in a month so will have more answers then.