Rebif or not to rebif


My partner was diagnosed this year with RRMS, he has had a course of steroids 4 weeks ago but no improvement of symtoms yet, he has been told to take the rebif injections so as to prolong his disease, would you take the treatment ? what would your advice be ? he has lessions on spine & brain and has been poorly for 2 years. seems to have all the symptoms possible at the mo!

hi goold66

rebif is one of the disease modifying drugs (DMDs) which reduce the number of relapses and therefore reduce the risk of further disability.

there are oral DMDs (gilenya, tecfidera and aubaggio).

has your partner got an ms nurse?

he should give her a ring and ask what alternatives are available to him.

injections aren’t so bad. i was on copaxone - daily injections - for 6 years and recently switched to tecfidera.

​the ms nurse should be able to talk him through his options and show him how to inject.

there are autojects for most of the injectables. i think rebif has the rebi-smart,

this means that you don’t have to handle the actual needle.

it is a personal decision but the alternative is more relapses and more disability.

think also about how it will fit his daily routine.

skin care is important because it helps the needle go in more easily.

just a simple moisturiser such as double base gel which your gp can prescribe.

good luck to you both

carole x

hello goold66

you’ve got some good advice there from carole- i was only on rebif a short time but had horrible side effects, so came off and now on gilenya. my experience however is only my experience and your partner’s will be different as MS is certainly different to everyone elses. injecting was fine- unpleasant every once and again, but certainly a lot more tolerable than a lumber puncture ever was hehe.

please tell him not to be respondent- it often (and did for me) take a while before the steroids work, and if he is experiencing a rush of symptoms his neuro may give him more sooner rather than later. i believe 3 courses in 12 months is the current prescription.

all the best, fluffyollie xx

Thank you for your replys, I do wonder what would happen if he were to take no DMD’s ? he has been very strict with healthy eating etc …

We are currently living in France so things are a little different over here … we go to see a specialist in a few weeks to perhaps seek further advice. I would like to hear from anyone who hasnt taken the treatment … ? I suppose its just wishful thinking!

All the best to you all xx

The essential thing about any of the DMDs is that they reduce the frequency and severity of relapses. That’s all, but for RRMS it’s everything. For every relapse he will be left with some degree of damage so it makes sense to do what you can to reduce the relapses.

Healthy eating is sensible for everyone as is exercise, rest and a healthy lifestyle but MS is one of the big ones and needs a combination of everything throwing at it. Don’t underestimate it - it is a chronic progressive incurable condition that can floor someone any time. We are lucky to live in a time where we have the choice of so many DMDs to help stop this happening.

I’ve been injecting Betaferon (similar to Rebif) for about 11 years and for the last three have had no relapses at all. I was cautious about injecting at the start but I also owed it to my family to try and slow down the progression as much as possible. So to answer your question, what would happen if he took no DMDs? He risks more relapses and worse ones. And they’re just as bad in any country!

Good luck with whatever he decides.