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Rebif?!?! Advice please

Hi all, Recently had diagnosis of RRMS. Been advised to read up on treatments and thinking of going with Rebif? Any advice, for or against, all info welcomed please?! I have 2 young children and lead a pretty busy lifestyle. Thanks all in advance. xx

Hi. I’ve been on rebif for three months now. I use the rebismart device to inject and have found it very easy and convenient. The only side effects I’ve had have been headaches on the first day and then on each of the two dose increases and some sciatic pain when I once accidentally injected in the wrong place in my back! It fits in no problem to my lifestyle/routine. I’ve had one relapse while I’ve been on it but that was when I’d only been taking it a few weeks so it wouldn’t have been in my system properly yet. Just have to wait and see how effective it is for me now. Good luck with your decision and starting your treatment x

Thank you so much for your advice. How long did it take you to get started on it? I have been advised that it takes approximately two months to get started? What is the process of receiving the treatment in the way of getting the equipment required? Sorry about all the questions but so daunting being all new. Thank you and good luck to you too. Hope it works well for you. Unfortunately, I am still currently recovering from a relapse. Many thanks for your help. x

I was told it would take 6-8 weeks. After 8 weeks I rang my ms nurse to chase and was told there’d been a mistake and my prescription had only gone in the previous day and that it’d be another 6 to 8 weeks! Anyway, the next day the drug company rang and arranged to deliver it within the week. I think it depends where you are. I get mine delivered by bupa home health. When they bring the equipment it’s a huge box of goodies - device, cool bag and blocks, sharps bins etc. now every four weeks I just get the rebif cartridges, so one smallish box. A support nurse from the drug company has been twice to see me to check I’m getting on ok with it and I’ve had monthly blood tests. It’s a shock when you get your first delivery cause it makes it all real but it’s just become part of my routine now. Don’t worry about asking questions!

Hi Charlt, how are you getting on with the decision making?

Hi

I was on Rebif for a couple of years and it was great for me. In the year before I started it I had about 5 or 6 relapses. In the 2 years I was on it I only had 2 fairly minor relapses.

As Sunflower said, I’d get a delivery each month of the drug, and they’d take away the sharps bin too. Injecting it was a bit of a faf, but I found it was better for me to inject manually (the Rebismart device wasn’t available back then). The first couple of weeks I was on it I felt a bit rough after injecting with flu-like symptoms. However these eventually lessened. I’d still need to take some painkillers when going to bed or in the morning though, as I could feel a bit groggy. However the painkillers always quicly got me back to normal (for some reason ibuprofen was better than paracetamol).

Hope whatever you choose works well for you. And remember, if you fnd you’re not getting along with whatever drug you choose, you can always just ask to swap for something else.

Dan

Hi Charlt

I was on Rebif for 4 years up to this September. Mine was delivered by Bupa to my workplace and they used to take the full sharps bins too. When I first started it was a different auto injector but my nurse arranged for me to switch to the Rebismart when that became available as it was much easier to use with dexterity issues. I think the only thing it couldn’t do was make a cup of tea afterwards :wink:

I chose the drug in May and it was delivered in July but I didn’t do my first injection until August as we decided to wait until I was off work so I could get used to it before returning to work. (I’m in admin at a school so work term times only.)

I used to get slight flu-like symptoms afterwards so always took ibuprofen with the injection (which I always did at bedtime) and again the next morning. By lunchtime I would feel less achy. The side effects wore off just as I went up to the full dose and I didn’t really have any after that.

I had one sensory relapse just a month after starting on Rebif (my nurse wasn’t worried as she said it takes a little while to build up in your system) and then I was relapse free for 3.5 years. Before starting on it, I had had two significant relapses within three months which led to diagnosis so I was pleased that it worked for me.

As Dan says, if you’re not happy with it for whatever reason, you can always swap. Good luck

Tracey x

Thank you all so much for your comments. This website and forum is so helpful and makes me feel at ease. Thank you everyone. I have contacted the MS nurse secretary number (that I was given at my hospital appointment) left a message but not yet heard anything back. I have not met my MS nurse or spoken to her yet and I want to get the ‘ball rolling’ in respect of starting this treatment. Thinking the sooner I made the contact the sooner things can get organised and I can get going. I saw a nurse at the hospital after being given the dignosis at my appointment with the consultant on 13/11/13. I do not want to hassle the MS nurse but at he same time I just want things to get moving. The NHS staff have been fantastic and I do not want to upset/annoy anyone by calling again. How long do you think it is acceptable to wait to hear and be visited by/speak to the MS nurse? I hope you all are currently well. I was diagnosed with Clinically Isolated Syndrome back in August 2012 with stroke like symptoms and hospitalised for 5 days, various tests etc, etc and advised at the time that this could be MS but I may or may never have any more 'episodes. This took about 6 weeks before I felt I was remotely back to day to day life. Still not right even after that. Persisting symptoms. Unfortunately on 27/10/13 I had a relapse showing lots of new symptoms, which I am still recovering from. Soooo many things to sort out now that I have the dignosis of RRMS. Where to start!! Life sure has been put into perspective. Tracey xx

Thank you all so much for your comments. This website and forum is so helpful and makes me feel at ease. Thank you everyone. I have contacted the MS nurse secretary number (that I was given at my hospital appointment) left a message but not yet heard anything back. I have not met my MS nurse or spoken to her yet and I want to get the ‘ball rolling’ in respect of starting this treatment. Thinking the sooner I made the contact the sooner things can get organised and I can get going. I saw a nurse at the hospital after being given the dignosis at my appointment with the consultant on 13/11/13. I do not want to hassle the MS nurse but at he same time I just want things to get moving. The NHS staff have been fantastic and I do not want to upset/annoy anyone by calling again. How long do you think it is acceptable to wait to hear and be visited by/speak to the MS nurse? I hope you all are currently well. I was diagnosed with Clinically Isolated Syndrome back in August 2012 with stroke like symptoms and hospitalised for 5 days, various tests etc, etc and advised at the time that this could be MS but I may or may never have any more 'episodes. This took about 6 weeks before I felt I was remotely back to day to day life. Still not right even after that. Persisting symptoms. Unfortunately on 27/10/13 I had a relapse showing lots of new symptoms, which I am still recovering from. Soooo many things to sort out now that I have the dignosis of RRMS. Where to start!! Life sure has been put into perspective. Tracey xx