Wondering whether to stay on Rebif

A board to discuss the Multiple Sclerosis modifying drug Rebif

Wondering whether to stay on Rebif

Postby Frederic » Sun Apr 01, 2012 3:34 am

Hi Everyone,
So That's me been taking Rebif for 3 months now (RR for 12 years now, 35 yo). Have taking nothing prior to that except for a relapse last May which required Corticosteroid treatment in hospital.
And now that I've been on 44 mcg, 3x a week (M/W/F) for about 6 weeks, I'm finding it more and more difficult.
The morning after my injection, I am hit very hard and I find it more difficult to walk. It does seem to get better in the afternoon though. I have gradually become a bit bemused psychologically also and the effects of taking it are very apparent. Am I better than prior to taking the drug? Haven't decided yet but it's swinging slowly towards a 'no' at the moment.
The thing is, I notice a vast improvement on the Sunday because I've been more relaxed on the Saturday as I haven't been to work all day. I do actually see improvements in my symptoms..
It seems that any improvements that look as though I can improve upon (through alternative/complementary therapies, yoga, swimming etc.) are ruined because of the frequency of the dose (and the frequency of dealing with the side effect).
I have asked my neurologist about reducing my dose to 22mcg or about reducing the frequency I take the 44mcg but these ideas were cast aside immediately without any offer of possible alternative solutions to my prescription. I'm still suspicious that a change may be of benefit to me though and particularly on reducing the frequency of taking the full dose.

I was hoping that I could get some opinions from anyone who has thought it may be beneficial to change their dose or frequency of taking it (or has actually done this).

Many thanks, Fred.
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Re: Wondering whether to stay on Rebif

Postby paul2008 » Sun Apr 01, 2012 7:48 am

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Last edited by paul2008 on Fri Mar 01, 2013 1:19 pm, edited 1 time in total.
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Re: Wondering whether to stay on Rebif

Postby oreo » Sun Apr 01, 2012 5:01 pm

My neuro scaled me back to 22 instead of 44 fairly early on as he doesn't feel 44 is necessary except for those with a high burden of disease.
I have been on 22 for about 5 years and doing quite well with little by the way of side effects - maybe 5 or 6 'bad' shots a year.
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Re: Wondering whether to stay on Rebif

Postby mrbarlow » Sun Apr 01, 2012 10:06 pm

I was on 44mcg 3 x per week from November 2010 to February 2012. I have moved Countries and jobs and no longer have Rebif other than an accumulated supply of about 24 injections. I take 2 every 3 weeks (wont bore you with reasons why but are occu[atiopnal) and will do until it runs out. However when Im not taking it I feel great.

If your Neuro won't cooperate perhaps try 2 x per week and just store the spare injections.
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Re: Wondering whether to stay on Rebif

Postby Frederic » Wed Apr 04, 2012 11:47 am

Thanks for your replies.
It's really tricky one for me as it's not just the MS that's unpredictable but the treatment too. For example, since I initially posted, I've actually been feeling a lot of benefit even with the difficulties the morning after (a lot of strength returning to muscles that have been weakened for years, better balance walking, increased concentration at work..)
I'm now thinking that I will stick with the 44 dose and the frequency and give it a chance but I can always make the decision to reduce the frequency of taking it if I think I need to. I'm just frustrated at the doubt that's caused in me that I may be 'mistreating' myself by doing this.
I reckon because I have always been averse to taking any drug (even a paracetamol) I have been a bit stressed too, which hasn't helped.
And like you mrbarlow, I too have moved countries and jobs and I'm also trying to fit the treatment around all of that. It's quite a juggling act.
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Now on Avonex

Postby Frederic » Sat Nov 23, 2013 12:19 pm

Hi everyone,

Just an update for some further info on what I'd decided to do about the Rebif treatment :

In April 2012 I did actually discontinue taking the Rebif and I felt much better and actually had a great summer without taking any medication. I had been limping a little but by about april 2013 I was exercising a lot better. I did however have a relapse in my leg which resulted in a hospitalisation and corticosteroid treatment (which along with physiotherapy treatment was very effective).

I can quite confidently say that I had pushed myself too much and it was that that caused the relapse. I had gradually increased my workload and became confident to add in more intensity to my exercise but looking back on it now I can see how much I'd pushed myself.

I was now thinking that I was willing to give Interferon another go but not three times a week. My extremely disapproving neurologist was quite unwilling to let me go on to Avonex, which I'd found out was only one injection per week and she finally relented after I was practically shouting at her that there would have been no way I could have maintained my job with those side-effects.

After 6 months on Avonex I can say that it is far more manageable. It's not without issues of course but I am gradually getting back to a good way of life even though my Saturday nights are spent dealing with the effects of the treatment. I am now exercising better, even finding areas in my body that I didn't know were affected and I'm finding an awareness that I probably wouldn't have gained if it weren't for the interferon.

I do find it to be a very odd experience taking this. I am hit the evening I take the injection by a foggy head and a very weak left leg and am pretty tired the day after and limping. By Monday I'm better and then by mid-week I'm walking really well. It's all fine then until I then take another injection which makes me think that a balance is gradually stabilising. I have another MRI booked for January and I think that alot of inflammation will have been reduced but I'm still aware of where some still exists. On a whole though - better.

Another thing I've noticed is that initially taking a paracetamol a couple of hours after the injection was ok but now I limp worse if I take one. Result being I'd rather not do anything except stay well hydrated. I have never noticed any improvement in reducing any side-effects anyway

So, I'll be moving over to the Avonex board for any future comments but if anyone has anything to say regarding a shift from Rebif to Avonex I'd appreciate hearing it.

Cheers
Fred
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