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
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
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.