First time posting and i wondering what experiences people have with coming off rebif,my neuro suggests this going from rebif 44 (been on it 5 yrs and an SPMS) to rebif 22 then coming off after 6mths. Im so worried and would appriciate some help, so frightened what will happen to me, ts a bit of an emotional crutch to me as in my head its wht keeps me well. new MRI showed no new lessions and im pretty stable ie no relapses… so worried wht will happen when i come of it, will i progress quicker etc…all over the place mentallysorry folks.
No, of course this is going to be horribly scary. How does your neuro know you are SPMS, if you have no more relapses or lesions?
Are you progressing? Is anything changing? Are you still mobile?
If all is fairly well with you, then I’d fight like mad to stay on Rebif. 5 years isn’t that long. Many people have been on it for more than 10 years.
I’ve been on it 12 years and my MS nurse told me that she had patients who had been on it for 15 years.
If it’s an emotional crutch, then tell your neuro - they need to know.
I do hope this turns out well for you. Rebif 22 will still work.
Hi all, first post and all that. Have a look on rte.ie irish website. Read story about ms sufferer fight for " right to die".I really feel for her, everyone should have the “choice” especially when are going through this lady’s pain and suffering. Just a quick one!! story now on BBC Ni! Rgds Carollgees