Hi I did my first Rebif injection today (22 micro). So far so good, although getting a bit achey around my back and hips now so will be pleased if it doesnt get any worse than this. I did the injection at 12.00 noon and I plan to change to 9.00pm from now on so I can sleep through any side effects (fingers crossed!) The nurse says I will go up to 44 micro after a month if my blood tests are ok. Has anyone out there had any difficulty going up to the full dose? Jenni
Hi Jenni
I’ve been on 44mcg dose for a week now and, apart from a headache now and again, I’ve not had any side effects. I normally ache when I wake up in the morning and by the end of the day anyway so I can’t really put it down to the injections. I take Co-Dydramol for my joint pain anyway which has paracetamol and it seems to get rid of the headache.
Hopefully you’ll be fortunate and not experience the nasty flu like symptoms like me
Take care
Pen xx
Hi Jenni, I go up to the full dose next Thursday so I’ll let you know. I have been on titration from 8.8 up to 22 then finally up to 44. I’ve got into a routine now with 2 Amitriptyline at 8.00pm, injection at 10.00pm and then 2 ibuprofen at 10.20pm and I sleep through anything happening most nights. I hope 44 will be ok for me and I wish you all the best on your rebif journey.
Thank you Fudgey, I’m pleased that you’re doing so well :0) I was wondering if I might start on a lower dose but apparently they don’t do that in my area (Southampton). I might take an extra Amitriptyline tonight just in case, but so far so good. I hope you are ok with the 44 next week. Jenni x
If anyones wondering about rebif , Ive made this video, hope it can help:
http://www.youtube.com/watch?v=GJp8QEzcIa0&feature=youtu.be
Callum
Hi Jenni
I’ve been on Rebif for nearly 4 years now. I used to get a headache and feel quite achy like when you have flu but it was easily controlled if I remembered to take paracetomol/ibuprofen when I did the injection and continue taking painkillers up to about lunchtime the next day. I found that ibuprofen worked better for me. I still do the injections at bedtime as I found it easier to sleep through the side effects. I still get red marks at the injection sites but they fade after a few weeks and don’t hurt at all.
The side effects eased off just as I went from 22 to 44 mcg and I didn’t really get them after that so it worked out very well. All my blood tests were fine too and still are. I now only see the nurse every 6 months and the neuro annually. I also went 3.5 years without a relapse after going on Rebif so I am very pleased with it so far.
If there’s anything else you want to know, just ask.
Tracey x
Thanks Tracey, its good to know you have gone up to 44 without any problems, hopefully I will be the same - fingers crossed!
Jenni x
I’m taking my first 44 on Thursday night too. I’ve been through 8.8 and 22 with virtually no side effects so I’m hoping that it won’t be too bad on 44. My nurse said I would probably need an ibuprofen for this one even though I’ve got away without it up until now. Gulp!
Another thing my nurse said is that their helpline closes at 9pm, so a bit before that is a good idea to start with just in case you run into any problems.
Good luck!
I’m taking my first 44 on Thursday night too. I’ve been through 8.8 and 22 with virtually no side effects so I’m hoping that it won’t be too bad on 44. My nurse said I would probably need an ibuprofen for this one even though I’ve got away without it up until now. Gulp!
Another thing my nurse said is that their helpline closes at 9pm, so a bit before that is a good idea to start with just in case you run into any problems.
Good luck!