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Reality Bites

Yesterday I took delivery of my medication (well my dad did as I was at the doctors). I knew it was going to be delivered but there was a little voice in my head saying “you never know, they may have made a mistake and it’s not actually MS”. Unfortunately it is and a box containing everything Rebif arrived by special courier.

When I got home from the doctors my dad was very positive and trying to keep my spirits up, but I just felt so down. It was the final reality slap in the face - after all they wouldn’t send out medication for nothing would they?

So curiosity got the better of me and after nearly and hour I opened the box. Inside I found everything I need to see me through the next few weeks once I start my treatment on Tuesday when the medication nurse visits to show me how.

Any positives out there that I can take note of? I’m normally a positive person but this last week (probably not helped by having a cold) I’ve felt low, exhausted and not interested in anything.

I’m prepared for the flu like symptoms and low mood but is there anyone else about to start Rebif that would like to be a Rebif Buddy with me? My OT suggested I find out if there was so at least there would be someone else experiencing the first few weeks/months on the treatment and side effects (if any and fingers crossed hardly any of any signficance) that we both experience.

Thanks for reading and have a good weekend everyone

Take care

Pen xx

Hello Pen

Just wishing you the very best of luck when you get started - it’ll soon become part of your routine. And you’re doing the best thing to minimise future relapses which is the most important thing you can do now. Nasty things, relapses.

I’d been diagnosed for a few years before the interferons became available so I wasn’t coping with a new diagnosis at the same time. I was desperate to start DMDs as I’d had a few relapses by then so knew that I wanted to prevent them as much as possible. Ten years on and it’s still working well - I hope it does for you too.

Take care

Hi Pen

Just wanted to reiterate what Val said really. Best of luck with it. In August it will be my fourth anniversary of starting on Rebif and I am so glad I did.

I too started on Rebif soon after (a quick) diagnosis and, although I thought I had come to terms with it, choosing a DMD and receiving the parcel of ‘goodies’ did make it more real somehow. I felt exactly the same as you; it really brought it home to me that there was no mistake and I really did have an incurable condition. I took it hard and went through all the anger etc again that I had gone through at diagnosis. My Rebif box was delivered at work and one of my colleagues asked if that was our box of goodies so I snapped at her and said well you take it home and do the injections then. I felt awful afterwards but they just didn’t seem to understand what a huge decision this had been for me even before I faced doing the injections even though I had tried to explain.

My fears were unfounded; the nurse trained me to do the injection and was there to support me with the first one. It was over in seconds and was so much easier than I had thought it would be. Now it is as routine as brushing my teeth. My side effects were easily controlled by ibuprofen and paracetomol and they subsided just as I went up to the 44mg dose.

My overriding concern was to control the relapses which is why I was keen to get onto DMDs and I believe Rebif is working well for me. After a sensory relapse shortly after starting on it I then went 3.5 years without any relapses. I am now recovering from one which affected mostly my right leg and left arm but I still worked through this one and it was nowhere near as severe as the previous one which led to my diagnosis. I still work 30 hours pw, still have holidays, go to yoga (when not relapsing), have an active social life etc. In short, my life is much the same as before with a few adaptations for the fatigue and the things I find difficult. I work around the MS but I don’t let it stop me.

I know there are a couple of members here who are now due to start on DMDs so hopefully you can find a Rebif buddy. I think it’s a great idea to share your experience with someone going through the same thing as they are often the only ones who truly understand what you are going through.

Good luck and don’t forget to tell us how you get on

Tracey x

Hi Pen

Just a quick bit of advice for Rebif - you’ll no doubt be told to take some painkillers to help with the flu-like symptoms, but for some reason ibuprofen is better than paracetamol. Don’t know why that’s the case, but I remember someone saying it on here so I tried it instead of paracetamol, and definitely found it helped more. I’d take a couple before bed, then if I still felt a bit rough in the morning I’d have another couple, and they’d do the job. The side effects were worse at first, but after a week or two after starting them they weren’t too bad.

If you find you don’t get on well with it though, it is possible to switch to another DMD instead. Good luck with it though. I’m not on Rebif any more, but it made such a big difference to me. I’d had about 5 or 6 increasingly bad relapses in the 12 months before starting it. But when I was on it I averaged one mild relapse every couple of years.

Dan

Hey Pen I’ve been on Rebif for 2 1/2 years and sometimes still find myself in denial of my diagnosis!!! I have been lucky!!! no fluey side effects. Positives- does reduce relapses and progression. Positives- yes injecting does sting a little. But 3 times a week is a breeze compared to diabetics who may have to inject 3 times a day. Positives- easy delivery system of rebif and the necessary equipment e.g. Needles, sharps boxes Good luck Min xx

Hi Pen Good luck with getting started on Rebif. I’ve got my dmd info day on the 23rd April. My dmd of choice is Rebif and hopefully my ms nurse will agree! Cos I’m a bit of a control freak I’ve read everything I can find online about the dmds. :0) I’ve has ms for 25 years and it was so mild I could almost forget about it between relapses until 3 years ago when it started to be really activeand it was like being diagnosed all over again!. So now I just want something to slow down the relapses (fingers crossed). Best of luck for Tuesday xx

Hello Pen, I’ve just had the delivery people on the phone wanting to arrange my first delivery of Rebif… just waiting for blood results to be rushed through ( hospital lost 1st batch of bloods ) then they can deliver. I will then arrange for the Rebif nurse to visit… Was on Copaxone for 5 months but had to come off that for various reasons. I am a bit worried about possible side effects of Rebif but we both might be lucky and not get any… I’m more than happy to keep a progress report going with you, I guess you’ll be starting sooner than me… good luck !!

The flu like symptoms are pants. Been on it years now, but think I’ll be coming off soon as I’m now heading/ or in sp stage. Your temp will rage and you’ll shake and shiver. I’ve been dx many years now my mum still keeps thinking they’ve mixed me up and what i’ve got is a phase or a cure will come soon bless her. Good luck, you really do just get used to it in time (the rebif) and it has helped my relapses, well I believe it has as I was having one after another (did get time read all replies but just wanted to wish you luck and send you some hugs ) xx

Hi Pen Just to echo that which Min said. I have had no significant side effects either…just a mild headache a couple of times which to be honest, might not even have been due to the Rebif !! I’ve been on it since February and have been pleasantly surprised at the ease and simplicity of it all. Xx

Wow - thank you all so much for your comments - it’s very much appreciated and I’m not feeling as nervous as I was on Thursday & Friday but I’ve still got Tuesday to get through yet

Tracey - I will of course keep everyone updated as to how I get on

Dan - very useful info you’ve given - I’ll make sure I get a job lot of Ibuprofen in ready

Min - that’s what I thought - my 15 year old nephew is Type 1 Diabetic and he has to inject 3 or 4 times a day so I consider myself to be quite lucky only having to inject 3 times a week

Nellijen and Fudgy37 - maybe we could still be Rebif buddies together - if so I can PM you my email address and we can keep in touch off the forum - at least each of us will know we’re beginning this new journey in our lives around the same time and so we’re not alone going into this? Let me know.

Again, thank you all for you kind comments and I’ll let you know how my very first injection goes on Tuesday

Take care

Pen xx

Hi Pen, I am starting Copaxone, so different drug, but we are on the exact same time frame. I got my delivery last week and training nurse is coming on Tuesday. I totally empathise with everything you’ve written - feeling exactly the same. Seem to have lost my positivity and spark and gained a whole lot of anxiousness I’m not used to! Fingers crossed for you, I really hope it goes well xxx

Hi, I’m due to start on 20th may all being well so would love to be your buddy to share stories etc. I think it’s important to notice that whilst some still have side effects on the rebif after a while, many had minimal side effects if any, and some say they subsided a few weeks after starting. I was diagnosed in 2004 and was well up until my last relapse which has left me with some damage in my left leg. Starting meds and the fact my leg feels different is now a clear reminder I have m.s and some days really p***es me off, however I try to remain positive esp as I have a young child to keep my chin up for.nbut it is hard. I am thinking now the way to look at this medication is hopefully it’ll put a lid on the relapses, make them less severe and in turn slow down the progression. I am a needle phobic so very nervous of that part…keep watching the injection thing to try and help. Please keep me informed of how you get on and keep that chin up. I read a comment on here the other day… ‘I have m.s but it doesn’t have me’… I think it’s a bob on comment and we need to bare that in mind. Xxx

Hi. I have been on rebif since diagnosis in july 2011 I had a few of the flu symptoms but nothing too bad and i do my injections at night so i slept through them with the help of paracetamol. Ive had a few relapses still whilst on rebif and ive been told ive built up antibodies against it. I now have to look at changing treatment and dont really want capaxone as im not a fan of injections and have heard your more prone to site reactions. I have an appt with my nurse in may so will see then whats going to happen. It was looking like i was going on tysarbi but after more scans, although there are some new leisons there has been some improvement in others. X

Hi again Pen, yes of course you are more than welcome to pm me… absolutely fine… hope everything goes well on Tuesday, if it’s anything like when I started Copaxone, you’ll be thinking " is that all there is to it " re: the injection process, and I was a terrible needle phobic …still don’t like them but know I can cope a lot better now. Take care Anne-Marie xx