Last reply 1 month ago
No infusions 😔

So I had a phone consultation, I was supposed to be going to the hospital to get everything sorted for ocrevus, but obviously that was cancelled.

I will not be able to start the infusions for the foreseeable future now 😞 I was so ready to go back on meds after 3 years not taking anything!

So the plan is to go back into tecfidera, which was my first and only med taken. I did not get on with it because of the side effects but my consultant said I should be able to cope with them better now I am not able to go anywhere. Which I guess is true!

So now I am looking for some positive tec stories as mine was only negative 👎

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1 month ago

Hi @hollylb10, that s a shame about the Ocrevus. I’ve been on Tec for three years. For me the positives are good ones. It doesn’t interfere with life style at all. I keep a spare at work in case I ever forget to pack it. Because of the need to take with a mix of fat and protein, it made me think more seriously about being conscious with food and diet. In general, it helped me regulate and organise my life a bit more. Of course, in this time of Covid and more general flu, it doesn’t particularly suppress your immune system, it moderates it so that’s a big plus. So, that’s my story! All the best 😁

1 month ago

I’ve been using it for almost 2years now, other than the odd bit of flushes every now and again especially if I haven’t eaten properly, I get along ok with it.

1 month ago

@hollylb10 I got used to it (was on for 7y) My consultant had one patient who swore by putting peanut butter in a date and then the capsule in that. Then – a practised skill I imagine – swallowed the entire thing.

Whatever works I suppose. I’d have someone around to do the Heimlich if I didn’t get it right the first few times…

1 month ago

Really interested to hear of your experience. Am in the same boat re Ocrevus – waiting for telephone consultation instead of appointment now. Was supposed to be meeting an MS nurse for the first time around now (guess I won’t be getting one for a while now) and talking through starting infusions on 3 June. Consultant told me just over three weeks ago when he did my lumbar puncture that it would “all be over” by June and that it would be fine to go ahead! Guessing he may have changed his tune a bit now…
Wishing you lots of luck on the Tecfidera. Xx

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