Newbie - Rebif worried about reducing from 44mcg to 22mcg?

New diagnosis and before diagnosis
1

Hello All,

This is my first post. I 'm feeling a little isolated and since my diagnosis I found it difficult to talk to family/friends about my symptoms or treatment because when I have, I have felt a bit let down. I notice that they perhaps don’t know what to say and then never mention it again or they just can’t understand and tell me that I look fine, or in my partner’s case, is so anti the medication tells me I should stop it altogether and take up tai chi.

So I am desperate to hear from to someone else who is on the same treatment as me; is anyone else out there is using Rebif and if so, how have you found it to be? What dose are you managing with? Have you reduced the dose since starting it? How long have you been using it? etc…

As a bit of background about me, I’m 32 and was diagnosed with RRMS MS 9 months ago after two relapses over a 2 year period. I was relieved to finally receive a diagnosis after such a long period of uncertainty. I was offered a choice of DMDs straight away and using MS decisions chose Rebif (Interferon) because of it’s efficacy and it’s has been around a long time. I am now 6 months into 44mcg and although I follow the advice on managing the symptoms I am struggling with poor sleep and a lack of energy due to the side-effects which is having an impact on most aspects of my life and is getting me down.

In a nutshell my MS nurse has suggested reducing the dose to 22mcg or try another treatment but I am worried that 22mcg won’t be as effective and maybe I should just persevere for a bit longer. I am waiting to hear from her but in the meantime I would be grateful to hear from anyone about their experience.

Thank you in advance.

2

Your partner is barking up the right tree with the tai chi but barking up the wrong one on DMDs, I think. And I am sure that most of us will find that your experience of telling nearest and dearest chimes with our own experience, in some ways at least. You are not alone in your feelings about that, and I think that your thoughts on why people might be behaving that way are very astute.

For what it’s worth, in your shoes I would be wanting to try another DMD. There are plenty out there, so there’s no point soldiering on with one that is making you feel unwell for so much of the time. Reducing the dose might be a reasonable option if no alternatives were available, but there are alternatives and you might as well explore them.

These things are tricky if one is mindful of a partner who is keeping the ‘I told you so’ face on hot standby, but if he/she is less than supportive of your medication choices then that’s a pity but never mind: these are your decisions to make.

Alison