Should I delay starting Rebif?
Told by my MS nurse on 4th November that Rebif would be delivered within 4 weeks (tomorrow), I've rang the number on the letter for Lloyd's Clinical homecare and they have no record me on their system and the letter (dates 27th November) states its only just been processed... I felt I was juggling diagnosis & life quite well, but with this I'm struggling. We have my stepson moving in with us in a few weeks and it's now looking like I'll be starting Rebif over Christmas or after and during his transition. I've heard the side effects can be pretty horrendous for a couple of weeks, should I delay starting it until after Christmas and the new addition has settled in? Any advice? I'd love to hear about any experiences people have had with starting Rebif and getting hold of it in the first place?
I was on Rebif for a few years but had been on Copaxone for many years before that so I was used to self-injecting. I would assume it is protocol there to have a nurse show you how to inject? and where to? different people carry their body fat differently so a personal recommendation has to be made at where will be best for you. For me the inner thigh, rump and stomach were places I could tolerate. The back of the arm wasn't good for me but works well for others. I had kind of "flu" like symptoms from it that were helped by taking Alieve. I found that taking it in late evening was the best for timing as I felt the worst a few hours after taking and would rather sleep through that ;-). It took a bit of experimentation. Thankfully I wasn't on it for long before I was moved to Ocrevus which I greatly prefer. A semi-annual infusion that takes half the day is somehow much more tolerable than facing injections several times a week and it is much more effective as well. Hope it works for you but I didn't feel that great when on it and didn't think it was that effective. That could be that I was already 10 years into my MS diagnosis and transitioning to SPMS at the time. Good luck- I would think you will have a in-person injection training session with a MS nurse and the drug company also has a call-in line and internet chat type of service to walk you through issues...face it every company wants us on their drug ;-) to much competition these days so they all try their hardest to keep and win customers-
Thank you so much for your reply, that's so helpful! Unfortunatly I wasn't offered ocrevus because I've only have 1 relapse that we know of, so I'm in the weird waiting game of not wanting another but also wanted more treatment options! Good idea about taking it in the evening, I'll have a play with it and hope my 3 year old doesn't decide to wake in the night 😂