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PostPosted: Sun Apr 01, 2012 4:34 am 
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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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PostPosted: Sun Apr 01, 2012 8:48 am 
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Last edited by paul2008 on Fri Mar 01, 2013 2:19 pm, edited 1 time in total.

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PostPosted: Sun Apr 01, 2012 6:01 pm 
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Location: Canada - Ontario - South-West
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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PostPosted: Sun Apr 01, 2012 11:06 pm 
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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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PostPosted: Wed Apr 04, 2012 12:47 pm 
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Joined: Sun Apr 01, 2012 3:51 am
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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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