Going to start DMD's advice please.

Hi all, I’ve not posted much, but feel I will be in the next few months! I recently saw my neurologist and have made the decision to start Rebif. My MS nurse has just got the ball rolling and I expect to start them in four weeks. I was just wondering if anyone has any good advice regarding them, I have opted for pre-filled syringes to inject myself as I have injected myself before ( during pregnancy). also i have a five year old daughter and I’m not too sure how to explain it to her. I’m getting nervous now and thought I’d ask for your experience Thanks x

I use Rebif, I have the Rebismart gadget rather than syringes though. I find it can sting when I inject (but that doesn’t last), and I have to take ibuprofen about 3/4 hour before injecting to head off side effects - I get really fluey and shivery otherwise. I also take paracetamol a bit after else I feel a big groggy - this can sometimes persist a bit the day after. It doesn’t affect everyone, though, so I do advise trying without to see if you are affected or not.

I do get a lot of red site marks, especially noticeable in the sun. They do fade but I do seem to be getting several. Less of a problem on my tummy and back/buttocks since I keep them covered up anyway.

Sorry, that’s a bit warts-and-all. A lot of people don’t get the side effects, or they wear off over time, and the benefits are meant to outweigh.

Good luck with it.

…not sure I made myself that clear there - the ibuprofen and paracetamol do prevent the side effects completely, it’s only if I don’t take them I feel fluey…

Hiya, I take rebif through the rebismart. Apart from red site marks and the odd sting, I get no side effects at all! I don’t even take painkillers. Good luck xx

hi mew

just explain to your daughter that you have some special medicine.

at 5 years she should be able to cope with honest answers but you, as mum, will know if she can.

good luck on your new chapter in the adventure

carole x

Thanks everyone for your replys. It really helps to know that you’re not alone and get some good advice too! I will keep you all updated on how I go. X

Hi Mew! I have been on Rebif for 8 years.

I use the pre-filled syringes and manually inject. I do not use the rebismart because when i started it was not available and to be honest i cant be bothered to faff about with the machine. I am not scared of needles so its quicker for me. It takes me less than a minute to do my injection!!

I have a 9 year old and he really is not interested in my injections. When he was little i bought a ‘cash box’ with a lock so he didnt touch the rebif in the fridge. He knows mum has ms and needs medicine. I do not inject in front of him but on occasion he has come in the room when im doing it - he never bats an eyelid and he’s so used to it now that its just part of routine. It does not scare or worry him at all.

I didnt get the flu side effects but i did get headaches when i first started which i treated with ibuprofen. They have gone now.

Good luck with it.