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tecfidera not working

Hi I have been on tecfidera for 10 months. But I have not noticed any difference. And now I have taken second relapse in 10 months and back in hospital and bk on steroids.I am getting another MRI tomorrow. MS nurse is now talking about having a look at other medications for me. I dont think I can go through starting a new medication. As when I started tecfidera I took every side effect possible and was ready to throw towel in after 5 wks. But stuck with it. But had to take anti sickness tablets to stop sickness. Tablets to stop diarhea. Tablets for headaches. I was like walking chemist. And even after 10 months still get some side effects altho they are manageable now and I still get bad flushings. I know I cant go through this again and will probably say no thanks.

hi violet

i’m so very sorry that tecfidera hasn’t helped you avoid relapses.

it takes a lot of persistance to get past the side effects.

why not wait and see what your ms nurse suggests.

i, personally, would not want to go back to injections but would definitely consider lemtrada - would jump at the chance actually.

much love and good luck

carole x

HI carol.One of docs in here had mention lemtrada. But he wasnt neoro and didnt know much about it. He did think tho to qualify you need to be able to walk 50m unaided on your own.And think that comes with all same side effect. And the thot of going through that again id have to take more time off work. I was off 7 weeks last year. I just counted there, as I am no good at distances. It is 13 steps from my bed in hosp to toilet. I was struggling with this.and thats me with crutches. And I was taken baby steps. I shuffled my feett like baby took 2/3 steps and stopped 2/3 stps stop and so on. On a bad day I cant even walk that I have to hold on to someone as when coordination goes I can not hold a crutch as arms are floppy. Is this how I should be explaining things when I appeal my pip decision. When I get out im going to count steps from front of my house out to fron where taxi pick me up as this is the furthest Owalk in daily basis

I am really sorry the Tecfidera is not keeping your ms stable. Your ms sounds pretty active at the moment.

I would think your options will be Tysabri or lemtrada. It is very unlikely you will be put on the injections as they are not as effective as Tecfidera - so will not be effective enough. injectables - 30% reduction in relapse rate. Tecfidera - 50%. Tysabri and lemtrada are the next step up.

Although you are finding things difficult at the moment, if you get the right treatment that suits you and your ms - then you might feel a lot better than you do now.

You need to see a neurologist who knows about ms. If you don’t have access to one then ask your G.P. if you can be referred asap.

Just because the side effects were difficult for you on Tecfidera - it doesn’t mean you will have the same problems with a different DMD.

Good luck and i hope your ms stabilises soon.

Teresa.x

Thanks Teresa. I have appt with Neuro In may. Been a year since I seen him. And I think he will be shocked when he sees me. And how quickly I have deteriorated in a year.