Refib

Hi everyone

I was diagnosed with MS in May and am due to start treatment this Wednesday. I am starting with Refib and have been told that this needs to be stored in the fridge. I have been told to invest in a cold storage bag for when I need to travel and carry my treatment with me and wondered if anyone could recommed a particular make or brand as I want to make sure I buy something that is sufficient.

Thanks

Charlotte x

Hi Charlotte.

I was given the storage bag by the Rebif company when i started the treatment (starter kit). I didn’t pay for it. This was 7 years ago now so unless this has changed you should get it provided also.

Teresa.x

Thanks Teresa

They did mention that it would come in a storage bag but was unsure whether that was a temporary one and if I had to invest in something better but if thats not the case then thats good!

How have you found the Refib treatment I have heard that you get used to having to self inject quite quickly and seems easy to use? I have a nurse coming round on Wednesday to show me which has put my mind at ease a little bit.

C x

I have been lucky with Rebif as i have done well on it. I was diagnosed 7 years ago and went on it pretty soon after. No relapses since starting it but i am having a bit of a ‘blip’ at the moment as i had the flu and it is taking me a long time to get over it.

I have some ms symptoms sometimes but nothing major as yet.

I didn’t get the side effects with Rebif and have been fine. I started at 22 and then moved up to 44.

The auto-injector is now rebismart - i have no experience of this though, When i started it was called Rebiject (not available now). I used this for a while but got fed up of loading the injector so i manually inject now. I was a little nervous at first but not scared of needles. The whole injecting process takes me about a minute now. It is part of my routine.

I got myself a bit worried before my appointment with my nurse to do my first injection but when i had done it i turned to my nurse and said - “is that it?” she said “yeh! all done”. I laughed after for being nervous.

As for the storage bag - i got a small bag for weekend travelling and a large one for longer journeys. Could have changed now though i suppose!! I would wait to see what they give you before you buy anything. If its not supplied anymore they will advise you on what you need.

Good luck for Wednesday

Best wishes

Teresa.x

Don’t buy anything Charlotte - it should all come on the first delivery and you shouldn’t really need anything else for a while.

I did buy a couple of FRIO large injector bags to carry my cartridges and Rebismart when I went on holiday as these are much smaller than the big thing that came with the Rebif, but I didn’t have to, I could have used it.

It’s a bit different in the first month as you build up the dose, but Rebif is fine at room temperature for up to two weeks (it says 30 days on a US website, but my nurse told me 2 weeks), so you only need to store spare cartridges in the fridge once you’re properly up and running.

I’ve been unlucky with side effects - I’m still getting fluey feelings more than a year after I started, but paracetamol keeps these at bay these days. I recommend you stock up on paracetamol and/or ibuprofen just in case. I’ve found that prevention is best - if the fluey symptoms kick in, the paracetamol doesn’t get shot of them, just stops them from getting worse, so I always try to take two paracetamol with the injection and four and eight hours later - works for me anyway. A lot of people say that ibuprofen are more effective, but I can’t take them.

Despite the side effects, I am very happy with Rebif. The Rebismart is pretty nifty, but most importantly, I’ve stopped relapsing :slight_smile:

I hope it works out really well for you.

Karen x

Do pple only start taking drugs llike this once they are having relapses? My daughter isn’t on any DMD as the neuro told her she didn’t need them - but if they stop relapses that sounds like a perfect reason to take them. We’re seeing him again at half term, so should we ask again?

Thanks!

Vicky, if you meet the criteria for dmd’s then your daughter should be offered them.

Dmd’s are for RRMS.

The criteria is… she has to have experienced at least two ‘clinically significant’ relapses in the last two years.

Dmd’s have been proven to reduce relapses in quantity and severity. There is evidence to suggest that they are best taken early on in the disease progression.

Not everyone has the same view as me but my opinion is ‘get on the drugs!’

I have not had a relapse on dmd in 7 years. It does not work for everyone though. Some people get side effects or don’t suit the drugs. We are all different. My thoughts were ‘what have i got to lose?’ - best thing i ever did!

Best wishes

Teresa.x

Thanks guys, had my 1st injection today and i felt exactly the same way Teresa “is that it” and laughed at myself. Human nature to get nervous of the unknown though i suppose. Fingers crossed i do not get too many side effects although all stocked up on the paracetamol just in case :slight_smile:

Hi Vicky i was diagnosed back in May this year and haven’t had a relapse since my diagnoses. I was initially advised that i had to wait until i had a relapse before taking any treatment for MS but my MS specialist called a few weeks afterwards to say that it was entirely my decision whether i wanted to start treatment before my next relapse. He thought it may be wise but was happy with whatever i decided. My way of thinking was that if i was likely to have a relapse it would probably be a matter of months rather than years and to save myself a few months of not taking treatment which i would need to take for rest of my life didnt seem worth it in comparison to possibly running the risk of causing myself possible damage further down the line should i have a bad relapse. I would suggest talking to your neuro as everybodys experience and MS appears to differ slightly i am still a novice with regards to MS but for me i felt this was the best possible course to take. I hope this helps!

C xxx

Thanks guys, had my 1st injection today and i felt exactly the same way Teresa “is that it” and laughed at myself. Human nature to get nervous of the unknown though i suppose. Fingers crossed i do not get too many side effects although all stocked up on the paracetamol just in case :slight_smile:

Hi Vicky i was diagnosed back in May this year and haven’t had a relapse since my diagnoses. I was initially advised that i had to wait until i had a relapse before taking any treatment for MS but my MS specialist called a few weeks afterwards to say that it was entirely my decision whether i wanted to start treatment before my next relapse. He thought it may be wise but was happy with whatever i decided. My way of thinking was that if i was likely to have a relapse it would probably be a matter of months rather than years and to save myself a few months of not taking treatment which i would need to take for rest of my life didnt seem worth it in comparison to possibly running the risk of causing myself possible damage further down the line should i have a bad relapse. I would suggest talking to your neuro as everybodys experience and MS appears to differ slightly i am still a novice with regards to MS but for me i felt this was the best possible course to take. I hope this helps!

C xxx

Well done :slight_smile: It’s a big relief to get the first one out of the way :slight_smile:

Karen x