Rebif withdrawal

My neuro recently suggested I have a 2 week break from Rebif which I have taken for 5 years. My diagnosis changed last year to Secondary MS from RRMS. Since then I’m absolutely exhausted, falling asleep & crying at slightest thing! I have recently been on pretty strenuous train tour of Germany/Austria so not sure if fatigue is because of this or a direct result of withdrawal from Rebif. Anyone out there experienced the same, or any thoughts on whether to give up Rebif or hang on? My neuro is leaving the decision to me. Judy

Hi Judy sorry your feeling so unwell, I am sorry I can’t really answer your question. Has the neuro suggested the break because you have now been dx with secondary ms? Can I just ask you how did they know it has now become secondary ? I wanted to ask you this as I have had a few relapses lately, I am on Avonex, I went for an MRI two weeks ago, haven’t had the results yet and I am wondering if my dx has changed. I apologise for my questions has I haven’t really helped you. Hope you start feeling better soon. Karen x

Hi Karen, it was mostly because I have had only 1 relapse since starting Rebif & that was at the beginning. My MS has been just slowly but steadily worsening of present symptoms, bladder, night & breakthrough pain, weakening of legs, ability to walk distance reduced. However Vertigo was a new symptom 3 years ago which I suspect was relapse although docs don’t agree. So when I went on holiday forgetting my replacement capsule, so had to stretch my weekly dose over two weeks, he suggested this was good time to try without it. I cannot have MRI now as I also have pacemaker!! So diagnosis is more historical symptoms. At least you will know what has happened after you get your results. Basically I think if they find more lesions then you are still relapsing, if not then it may mean gradual worsening hence Secondary dx. It is kind of a lose, lose situation I guess but good luck with managing your symptoms. Judy x